Tell us about the Food Group and your role in the organization.

The Food Group is an anti-hunger organization that recognizes that meaningful hunger relief work requires a holistic approach. We work all the way across the food system to ultimately build a better and more equitable food system, from production to distribution. 

We have an incubator farm that's based in education to help the next generation of farmers grow all of our food, we operate discounted grocery programs, we are a food bank and we work with over 300 food shelves in Minnesota to provide funding and resources.

While we know that getting food to people today is very important, a part of our work is also acknowledging that broader food justice really comes from advocating for a better tomorrow. We do a lot of policy and advocacy work, and that is where my role comes in. I lead our policy and community engagement team. We work to enact state and federal policies that will help people have better access to healthy, nutritious and culturally familiar foods.

How does that role intersect with storytelling?

Food shelf visits in Minnesota have skyrocketed since 2019. There are more people who need resources. There's a lot more work that needs to be done. So advocating for state solutions like increased funding for food shelves and advocating at the federal level to protect programs like SNAP is more important than ever.

We know from years and years advocating at the Capitol that the most effective testimonies are ones rooted in personal experience. It's something that can't be replicated by data or lobbyists. It causes a shift we see frequently: lawmakers will lean in more, they'll put their phones down, they will make eye contact. They'll be more focused when we have people who testify and tell their own stories. Same thing with the media.

When we started thinking about how to be more effective anti-hunger advocates, it became clear that we needed a group of lived-experience experts that were equipped and ready to advocate alongside us and in partnership with us.

So, four years ago, we launched our lived-experience leadership cohort, about 8 to 10 lived-experience experts annually from around the state that work with us for six months. We equip them with the tools that they need to share their stories, advocate, testify, speak to the media and to really grow into advocates on their own.

You can't change the food system for the better alone. It can't be done by one organization, one staff or  one lobbyist. It requires everyone to show up at the table, and we could not do it without those who are most impacted centered in the conversations about change. We recognize that our work with lived-experience experts is truly the core of our advocacy and policy work.

Have you noticed an impact on your advocacy success since transitioning to an approach rooted in lived experience and storytelling for advocacy? 

Yes, absolutely. We have truly become a more recognized and a more credible organization because of it. We have had more media opportunities to talk about the work we do, more invitations to press events and more meetings with lawmakers.

All in all, the attention to the issue has significantly improved since working with our lived-experience experts and equipping them to be their own advocates. We attribute a lot of our successes to our advocates being willing to share their stories and talk about the issue in a more meaningful and personal way. 

Our lived-experience experts have shared their stories at press conferences with our governor, state representatives and senators. The way that their stories have touched really important people, it has just been incredible to watch. And it's also been incredible to see the follow up that comes with that.

We have some lived-experience experts who’ve developed great relationships with their lawmakers, which led to the lawmakers reaching out for their contact information to stay in touch.

One of the lived-experience experts who shared their story had one of our senators reach out and work with our state agency to help solve an issue that she was having with her benefit paperwork. To see the true, real-life impact first hand has just been remarkable. It just proves that storytelling bridges relationships. 

How has your work and your training with Living Proof Advocacy impacted your storytelling for advocacy?

The LPA certification training has reaffirmed the power of our lived-experience experts, and it was exactly the affirmation we needed. It helped us know that we were heading in the right direction with our advocacy program. 

We're a busy organization and our capacity as a staff is limited. So being able to go through this coaching certification training and have the resources, tools, worksheets, PowerPoints, everything ready and prepared for me to go in and talk to our cohort about storytelling has just been hugely helpful for us as an organization. Everything that we've heard thus far about implementing the tools and resources within our cohort has been positive. They've loved it. The LPA tips, training, resources and support was exactly what our advocates had been asking for.

What lies ahead for the Food Group and your advocacy cohort?

We want to continue to grow the lived-experience leadership cohort. We have worked with so many of our cohort members who want to stay involved or want to do more. We've had cohort members who want to go on and become advocates for Medicaid or for issues around homelessness. It's been so cool to watch them bloom and grow in their own personal advocacy outside of The Food Group. When you equip one person to feel empowered to tell their story for change, they equip other people with that same understanding that their stories are powerful and valuable. 

And one thing that we would really love to consider doing in the future is more of a comprehensive policy fellowship where our lived experts can even get more involved in the whole legislative process from start to finish.

It's incredibly inspiring and affirming to see someone share their lived experience and to have an impact doing so. It gives me hope, and makes the whole reason why we do this work worth it.

Make Policy Personal is an LPA initiative designed to celebrate—and support—advocates who know that the most effective advocacy connects lived experience to the policies that impact it. It supports advocates who bring their personal stories into legislative spaces so decision-makers can better understand the people behind the policies they debate.

In the stories linked below, you’ll meet some of those advocates. They share the successes and challenges of advocating in this very specific context—and how they’ve worked to have real, authentic impact within what is often a very short window of opportunity.

Rebekah Edmondson – advocating for Afghani women, military partners she fought alongside during the Afghan War. Read her story.

Barry Scanlan – advocating for the preservation of the desert land he first connected with nearly five decades ago. Read and hear his story.

Zach Wahls – advocating for marriage equity. Fifteen years ago a video of his advocacy went viral; now he’s running for office View his viral video.

Mindy Woods – shared this moment with us from the first time she shared her stories of being unhoused with legislators. Read Mindy’s full story in Living Proof. 

ABOUT MAKE POLICY PERSONAL WORKSHOPS: If you and your advocates are aiming to impact policy change with personal stories, contact us to learn about LPA’s Make Policy Personal workshops, which turn our proven storytelling-for-advocacy method into a focused, action-oriented pathway tailored specifically for policy advocacy. Workshops help advocates clarify what matters most, craft messages with intention and speak with purpose—so their stories don’t just move hearts, but inform decisions.

With the wonderful support of LPA and its partners, I came into this internship asking three main questions: 

1. What are the unique strengths of youth advocacy storytelling? 

2. Are there challenges to youth advocacy storytelling not seen through traditional adult pathways?

3. What are the specific needs of teen advocates from adult mentors and advocacy organizations? 

I decided to dig into these questions through an empirical qualitative research study, investigating these unique aspects of teen storytelling advocacy from the direct insight of teens themselves. Over the past few months, I’ve had the incredible privilege to speak to young advocates and a few adult youth advocacy experts across the country about youth advocacy strengths, challenges, and needs. 

The young advocates I spoke to ranged from ages 17 to 20 and worked in diverse areas of advocacy, such as rare disease, mental health, and youth participatory democracy. Most of them started advocating around 14 or 15 years old. The adults I spoke to worked in broad sweeping advocacy spaces and the foster care system, including LPA’s founders, John and Tim. 

Before the interviews, I learned that many of the insights we have about youth advocacy to date come from adult perspectives. From these perspectives, we know that youth advocacy storytelling is incredibly compelling, emotionally attuned, and struggles primarily to cut through the noise of adult-centered politics. I knew going into this study that one of the biggest barriers to teen advocacy would be age prejudice. I did not know, however, that this age prejudice would negatively frame the support given to teen advocates from adult mentors and advocacy organizations. Here are a few key ways in which this theme played out. 

Strategy vs. Community: A Difference In Emphasis

Talking to teens and adults engaged in youth advocacy spaces, I learned that tension lies between where these groups prioritize certain aspects of advocacy storytelling. Simply put, the adults I spoke to positioned advocacy mechanics (how to tell your story to push for change) as the most important lesson to teach young advocates through guidance and mentorship. While teens understood the great importance of advocacy mechanics, they viewed advocacy storytelling first and foremost as a way to connect with their community. In adult spaces, we might see belonging to a community as a positive consequence of advocacy storytelling further down the line. For teens, this sense of belonging is advocacy. They felt that actionable change could only come from fostering a rich community engaged in meaningful connection. 

“Adultifying” Barriers

Oftentimes, when well-meaning adults take on mentor roles for teen advocates, they dive into structured lessons about how to deliver their story in the most effective way possible. While this might mean acknowledging large emotional reactions from teens as necessary fuel to their passion, adults often advise against behaving in stereotypical ‘childish’ ways that might stifle persuasion tactics for adult audiences (such as heightened emotionality or essentialization of political realities). Teens feel like their voices are muffled when this happens. Teens recognize that adult audiences need to be respected. Still, by altering the delivery of their advocacy story, they risk losing the central call to action of their advocacy goal (i.e., holding lawmakers accountable for their actions, allowing authentic teen voices to be heard in adult spaces, etc.).

Teens also expressed concern about autonomy when entering advocacy spaces. They shared similar experiences of ‘adultification’, where adults co-opted their advocacy goals to strengthen organizational metrics and appease donors. Teens shared with me that these experiences alienated them from the advocacy causes they cared about and the communities they longed to feel a part of.

Implications for Future Youth Support

From these interviews, I found the most important insight for bettering youth-adult advocacy partnerships is this: fostering safe environments where co-creation and identity exploration for teens is not only possible but encouraged. Because teen advocates are already a marginalized group, ensuring their passion for social justice is nurtured when entering adult spaces should be a top priority. Teens need to feel safe to explore advocacy work in ways that invigorate and sustain their passion and energy. This might mean setting aside pre-defined notions of what advocacy is and what success looks like for the nuanced pathways teens set forth.

Next Steps

While I am so sad my internship with LPA is coming to an end, I’d like to express my gratitude to LPA, all interviewees, and everyone along the way who made this work possible. My hope is that a journal article detailing the findings of this study will be published within the new year. Regardless, these insights have helped inform the future of LPA’s journey into the world of youth advocacy storytelling and what may come out of it. 

I’d like to finish with a profound insight I learned from an interview with one of the teens:

I see, like, all over just social media [...] “youth are the leaders of tomorrow.” I think that's kind of misleading, especially because I think we should, in order to become said leaders of tomorrow, we also have to be leading right now and today. 

Diagnosed in 2014 with sarcoidosis-associated interstitial lung disease (ILD), he also lives with several closely related rare conditions. His complex medical challenges have left him fully disabled since 2016.

Before his diagnosis, Jim spent more than 30 years as a successful global business leader, concluding his career with five years of full-time missionary work. Today, he is an accomplished speaker and a regular blog contributor, sharing insight into life as a rare disease warrior.

Jim and his wife of 38 years refuse to let disability diminish their joy. Living in the Greater Orlando area, he still finds ways to enjoy gardening, movies, travel and time with family. Together, they’ve learned to cherish each day and live fully in the moment.

 We’re proud to support Jim and other rare-disease advocates, and are happy to provide this platform for Jim’s important message to others in the rare-disease community.

When I first began sharing my rare disease journey eight years ago as an advocate with the Foundation for Sarcoidosis Research (FSR), I didn’t know if anyone would hear me. I worried my experience was too specific, too quiet, too complicated to matter. Then one day, someone said, “Me too.” In that moment, everything changed.

In the rare disease community, stories aren’t just reflections—they’re bridges. They connect us across diagnoses, distances, and silence. Telling your story isn’t just an act of courage; it’s an act of transformation. It’s how we heal, how we teach, and how we build a community that refuses to stay unseen.

Stories Create Visibility

Rare diseases are often overlooked, misunderstood, or misdiagnosed. Sharing your story brings them into focus. It turns medical terminology into real life—lived experiences. It gives researchers urgency, caregivers insight, and policymakers context they would otherwise never grasp.

Your voice reveals what textbooks never will—and that visibility changes things. I remember that when I shared my story, and the costs of my monthly medications, with my congressman during Rare Disease Week Capitol Hill Day, he was shocked. My story helped to get my legislators on board to find better solutions for rare disease patients.

Storytelling Heals

Putting your experience into words can be grounding and restorative. It allows you to process what you’ve endured, reclaim who you are, and understand the path you’re navigating. Whether you write, speak, record, or post, storytelling honors your truth.

It’s not about being polished. It’s about being present. Healing often begins the moment we stop shrinking back and start stepping forward. Every time I share my story, I feel as if I am speaking words of encouragement and instruction to myself, as well as others.

Your Story Builds Community

Sharing your story creates space for others to share theirs. It opens doors to connection, validation, and belonging. Sometimes a single story is enough to create a ripple—someone feels seen, someone finds courage, someone begins to hope again.

Rare doesn’t mean alone. Your voice makes that clear.

Advocacy Begins with Lived Experience

Every movement begins with a story. Your perspective can educate physicians, inform researchers, and inspire legislators. It can guide support organizations, influence funding, and reshape standards of care.

You don’t need a podium to make an impact. You just need your truth. My story, and yours, has power; power to reach the highest levels. When I shared my experiences with the FDA, at a listening session hosted by the Foundation for Sarcoidosis Research, they began to understand the burden that rare disease has on the patient and their caregivers. 

Start Your Story Where You Are

You don’t need a platform or a perfect draft. You simply need a beginning. Whether it’s a blog post, a social media update, a journal entry, or an honest conversation with a friend—your story matters.

Start small. Start real. Start now.

Your story doesn’t need to be long or loud. It just needs to be yours.

Because when you speak, you give someone else permission to speak. When you share, someone else feels less alone. And when you tell the truth of your journey, you help create a world that listens more closely to those living with rare disease.

So, start where you are.
Write a sentence.
Share a moment.
Begin the conversation.

Your voice matters.
Your story matters.
And someone out there is waiting to hear it.

About the Foundation for Sarcoidosis Research

The Foundation for Sarcoidosis Research (FSR) is the leading international organization dedicated to finding a cure for sarcoidosis and improving care for sarcoidosis patients through research, education, and support. Since its establishment in 2000, FSR has fostered over $7.2 million in sarcoidosis-specific research efforts. Learn more: stopsarcoidosis.org

How did NXT Mission come to be?

I had the distinct honor of working with some incredible human beings, men and women of the Afghan National Security Forces. Many of the women fled Afghanistan after the war and now live here in America—where they face a whole new set of challenges.

At NXT Mission, we're trying to ensure that these women, who served directly alongside me and other American service members, are taken care of. When we left Afghanistan, we left a lot of people with the rug pulled out from underneath them. Many of them also have family members in Afghanistan who live in very dangerous situations. 

What we're looking to accomplish is reuniting these women with their family members. This is important to me because, as an American veteran, I'm privileged to live in a society where the general population extends a lot of gratitude towards me for having served my country. My government takes pretty good care of me. I have benefits that I have been able to rely on, things that give me access to education and healthcare, even my ability to purchase a home.. 

My Afghan colleagues, whose lives have been upended as a direct result of the war, now live here as refugees without permanent status. They still risk the potential for deportation back to their country. They don't have a shred of the types of support that I have, and they fought the very same war. They fought on the same side and risked their lives.

What NXT Mission aims to do is find mechanisms that can support them. We provide educational opportunities and solutions to medical or healthcare issues. However, our main focus, which is the thing most important to them, is fighting to get their family members out of harm's way. 

Did your experience with LPA change how you viewed storytelling as a part of your work?

At one point in my education in social work, I became very curious about narrative therapy and the healing that can take place for individuals as they not only recall their story, but are empowered to rewrite it with a new outcome. 

When going through the LPA coaching certification, I realized that healing can occur as one shares their unique story. It doesn't just help the person sharing, but it also stands to help the listener.

The LPA method also empowers somebody to shape their story in an effective way. It hones in on what is at the core message that you’re trying to convey. What do I want people to have as a takeaway from what I'm sharing? Having those clear guidelines allows people that have been through something very difficult to become empowered to sit down and practice what they can use to actually get the message out there. 

Have you seen that connection with listeners happen in real time?

Absolutely. A lot of the work that we have done with Next Mission is real-time advocacy in congressional offices, sharing personal experiences with lawmakers so that they can understand the context of what an individual's life experience has been. 

Legislators often don't understand the context: these women are our military partners. They were recruited, trained, deployed, and put in harm's way under our operational direction.

So, without that key piece of information, the reason this issue matters can get lost. For me, it’s not just telling a story, it’s sharing why I care.

And I care because these are my colleagues. Their blood is no less valuable than the blood of American soldiers. They sacrificed in the very same ways. 

When you look at it in that context, the question of “Why do they deserve our support?” becomes easier to connect with. If you believe in supporting American veterans and ensuring that their sacrifices are honored, then these women need to be treated the same way. 

Those are key pieces of information that give context to the impact. Unless you're being very intentional about how you tell the story, people will often lose value or not completely understand why something like that matters. 

After my experience with LPA I’m not going into meetings and congressional offices without a clear focus and just rambling. I used to leave those meetings feeling very frustrated. I would feel like I had this opportunity right in front of me, and I lost it. The difference now is that I am doing the work to get crystal clear about why we're going, what we want them to hear, and the action that we're hoping they take. 

We may only have five minutes or less to make our point, and the LPA method empowers people to get very clear about defining the impact that they want to have by sharing their story. 

We have seen members of Congress come to tears. When a person can articulate who they are, what they’ve experienced, what they’re asking of you, and what the person on the receiving end can do about the issue. It gives the listener the opportunity to actually consider that this is something that they can actually do something about. 

And sometimes the answer is no, but you can walk away knowing the message was received, and either they support it or they don't, but you don't walk away feeling like it was a missed opportunity. 

What’s next for NXT Mission? 

Time has continued to pass by since the war ended in 2021, but there's still a very real need for not just support, but to continue putting the message out there and sharing these stories so that people don't feel like they've been forgotten. 

That has been a driving force behind a lot of the work that we do: ensuring that we can keep getting the message out there, that we don't lose motivation just because time has passed and people's attention has become refocused on other things. 

Part of what’s next for us is keeping that determination alive and making sure people know that this still matters each and every day, and it's going to continue to matter five, 10, 15 years down the road. There isn’t a finite amount of time where people should care about the sacrifices these women made. 

There's good reason to keep sharing their stories and to keep fighting the good fight, even if things haven't been fully resolved. We have to use storytelling as fuel for the advocacy work. 

Eventually their family members will be brought to safety. This work is a bucket-list thing for me. It’s something I’m looking to achieve before this life is over. 

As Barry readily admits, “I’m not a policy guy.” But the staff of the Land Trust knew that Barry was valuable to them achieving their advocacy goals, because he had lived experience as a veteran—as well as a passion for the desert that spans more than five decades.

“The land that helped prepare me to defend our country is now what I work to protect.” — Barry Scanlan

In 2023,  Barry and his wife Tami Spry moved from Minnesota to Yucca Valley, Calif. in the Mojave Desert and, coincidentally, just down the road from 29 Palms, the Marine Corps based where Barry was stationed as a teenager in 1972.

Never having seen a desert before, Barry urged his fellow young Marines to join him on hikes to explore the wildlife and terrain. “We were young men…and we all left with something positive about that place.”

Returning to the desert decades later sparked something powerful in him and he began volunteering with Mil-Tree Veteran Advocacy, an organization that works to involve veterans in environmental stewardship—as well as helping them experience the restorative power of being in nature.

We spoke to Barry about his preparation to share his personal stories and what the Washington advocacy experience was like for him. He provided us a great example of the importance of focusing stories (especially when you only have a few minutes!) and how an authentically shared personal story can spark interest and empathy.

Watch our six-minute feature on Barry’s advocacy here: https://www.youtube.com/watch?v=e2VAGzBrfkQ&t=25s

Sunny became an LPA-certified coach via the All Voices program in 2024.

How have stories and storytelling played a part in your life? 

I was always drawn to storytelling, even from a young age. I remember reading my first memoir when I was 11 or 12, a book called My Sergei, by figure skater Ekaterina Gordeeva.

My love of stories led me to pursue a career on Broadway, including being in the national touring company of Annie. Being a part of telling people stories through musicals was exciting for me. 

So, the first part of my life was about storytelling for entertainment purposes, something I’m still passionate about. But, I got to a point where I burned out of the entertainment business because I saw people's stories being commoditized.

Plus, I was drained. For a couple of years, I pulled back. I became a much more private person than I had ever been before to try to figure out what this next chapter of my life was going to look like. At the same time, I was going through a health journey and trying to find proper doctors. I live with a cortisol illness, which most likely comes from undiagnosed mental health issues. I had to tell people over and over again my health story, which can be traumatic, and I wasn't getting in front of the right health practitioner to help me heal. I figured out that—going forward—if I'm gonna tell anybody anything about myself, it needs to get me somewhere, it needs to help me. 

Eventually, I found two holistic health practitioners: a psychiatric nurse practitioner and a naturopath. They both wanted to learn about me beyond my symptoms in order to treat me correctly.

That was when I was able to reclaim the power of storytelling, by telling them the truth and my version of it, they were able to trace back to possibly where my health issues began. 

What led to the formation of Sunshine Silver Linings?

After my time on Broadway, I went to college for media and communications at Eugene Lang. This is where I discovered I wanted to help people and work outside of the theater business. I came back to Vermont after completing my program and joined a human services organization. 

When you're helping people get their basic needs met, to be ethical and truly empathize with them, you have to understand their stories and what their experiences are in their words.

I’ve found that one of the best ways to encourage people in making healthy choices is to understand the story they are telling themselves about their lives. Are they telling themselves a story in which they’re a survivor or a victim? Do they believe a story about getting out of generational poverty? Or that people are truly here to help them? A big part of helping is hearing what they imagine their life could be and using storytelling as a way to nurture their imaginations.

Now, and for the past decade, storytelling has been a part of my professional life through my consulting agency, working at the intersection of communications and well-being. I create workshops and opportunities for people to learn more about taking care of themselves, through what I call mental health literacy.

Why the "intersection of communications and well-being”?

When I started doing communications consulting, organizations would come to me initially for general communications support, like their newsletter or social media. But as I learned more about the organizations and the services they provide, I came to realize that for them to deliver their services, they first needed their staff to be healthy.

I am passionate about connecting the dots for people and organizations, so I began encouraging partnerships between organizations and offering classes like Mental Health First Aid and Question, Persuade, Refer, which focuses on suicide prevention. Along with general communications consulting, I began to develop a wide menu of additional workshops and offerings that spoke to what I saw communities and organizations really needed. For example, I have a workshop about compassion fatigue, called Nurturing Resilience, where we focus on burnout and boundaries.

Over the last eight years, I have worked with the University of Vermont Extension on a communication class for families going through separation and divorce. Divorce and storytelling has been critical in people seeing a future for themselves and their kids as they go through this life reorganization.

How has LPA certification fit into your work?

I'm so thankful that I connected with Living Proof Advocacy and have had the chance to understand the science behind storytelling, so I can feel confident when discussing it professionally, as well as getting a new understanding and appreciation of the craft of storytelling.

Something can be based in science and have a framework, but it doesn't have to feel stale or stagnant. It can still be colorful and exciting. 

The LPA work has really reinvigorated something I experienced as a young person who wanted to take in as many stories as I could. 

He recently shared with us this candid reflection, a powerful testament to how the Path to Advocacy is continually revealing itself. —Tim Cage and John Capecci

For reader awareness:

The reflection below includes descriptions of traumatic experiences in a psychiatric facility.

A Narrow Path of Passion in My Advocacy

Before I learned about the Living Proof Advocacy method, my advocacy came from a place of raw pain and fierce passion — and rightly so.

My experience with the Kenyan mental health system wasn’t just difficult; it was a brutal unraveling of my dignity. I was locked away behind heavy metal doors that clanged shut like prison gates. The psychiatric wards were overcrowded, the air stale with the suffocating smell of sweat, urine, and forgotten humanity. Cracked walls, peeling paint, and the buzz of flickering lights were the background to every waking moment. The beds — if you could call them that — were filthy, crawling with fleas that left my body covered in bites.

But it wasn’t just the environment that crushed me. It was the people — the very ones tasked with providing care. Their hands, which should have offered help, instead delivered blows. I was whipped like an animal, punished simply for existing. Each strike wasn't just physical pain — it was a message: You don't matter. You are not human.

When they threw me into solitary confinement, they stripped me naked — leaving me exposed, humiliated, and alone. Four bare walls closed in on me. There was no bed, no blanket, just the cold floor beneath my skin. The silence was heavy, broken only by my own breathing and the distant, muffled cries of others trapped like me.

Lying there, I felt my spirit slipping away.

I remember thinking, Maybe they’re right. Maybe I am invisible. Maybe my life doesn’t matter.  But somewhere deep inside, a tiny ember of defiance refused to die. A voice — faint but unyielding — whispered back: No. This is wrong. You deserve better. Everyone does.

That whisper grew into a fire. A fire fueled by every act of cruelty, every moment of abandonment. A fire that would later power my advocacy — not just to heal my own wounds, but to fight so no one else would ever be stripped of their dignity the way I had been.

I carried these painful memories with me, fueling my advocacy. I spoke with conviction, hoping my personal story would be the catalyst for change. But now, I see that my approach was narrow. My messages were often emotionally charged, filled with raw emotion, but they weren't always inviting or inclusive. I was speaking mostly to those who already shared my views and experiences — a common trap that many advocates fall into: preaching to the choir.

Then, something transformative happened. I encountered Living Proof Advocacy — an approach that made me rethink everything. I learned that advocacy wasn’t just about pouring out my soul; it was about persuading those who hadn’t yet seen the full picture. It was about acknowledging different perspectives, not pushing people away with blame, but inviting them in with understanding.

With this newfound knowledge, I began to craft messages that invited people into the conversation. Instead of merely shouting about the injustices, I started to frame the conversation differently.

For example, instead of saying, “Mental health services are grossly underfunded, and people are dying as a result,”

 I began to say:

“Investing in mental health care is more than a moral duty — it’s an investment in the future. For every shilling  we spend on mental health, we save four shillings in reduced emergency care,  and lost productivity. This isn’t just about compassion; it’s smart, strategic policy for the whole community.”

I found that framing the issue this way invited everyone to see the value in the solution. It wasn’t about guilt or shame — it was about shared interests and practical benefits that made sense to everyone, regardless of their political leanings or personal beliefs.

What followed was nothing short of a revelation. By shifting my focus from anger to persuasion, I began to see more people engaging with the issue. Conversations became more productive. Skeptics weren’t just pushed away or ignored; they were invited to understand. It was no longer just about me and my personal pain; it became about all of us and how we could collectively build a better, more compassionate society.

The Living Proof Advocacy method taught me that the real power of advocacy lies not in what you demand, but in how you invite others to share in your cause. It’s about speaking to the heart and connecting in ways that turn indifference into action.

Looking back on my journey, I realize that true advocacy isn’t just about speaking louder; it’s about speaking smarter. It’s about crafting messages that reach everyone, not just those who already agree with you. It’s about connecting, finding common ground, and persuading those who are still on the fence. This is how real change happens.

Living Proof Advocacy didn’t just change my approach — it changed the way I view the power of storytelling itself. It taught me that everyone has a role to play in change, and it’s my job to invite them to be part of the solution.

Bad is stronger than good.

That’s the title—and core finding—of a well-known research article by social psychologist Roy Baumeister and colleagues. Published in the Review of General Psychology, the article compiles evidence from across disciplines to demonstrate a sobering truth:

Negative experiences and emotions leave a deeper, more lasting impact than positive ones.

Whether it’s a harsh comment, a traumatic event or a moment of failure, bad tends to outweigh good in how we think, feel, remember and relate.

At Living Proof Advocacy, we’ve seen how this negativity bias plays out in advocacy storytelling. When people share stories about hardship, struggle or injustice, those stories matter—but if the story ends there, the takeaway often stays rooted in pain.

That’s why one of our Five Qualities of a Well-Told Advocacy Story is this:

Point to the Positive.

Not by sugarcoating. Not by skipping the hard parts.

But by tipping the balance—intentionally highlighting strength, agency, hope or possibility—we help audiences do more than feel sympathy or outrage. We help them see what’s worth building, supporting or fighting for. We help move them from empathy to action.

When you point to the positive, you show what’s possible. You leave your audience with something to carry forward—not just something to feel bad about.

It’s not about denying what’s hard. It’s about not letting what’s hard have the final word.

Advocates: Have you found this to be true? Let us know in the comments!

See the other qualities of a well-told advocacy story here.

My name is Annie Beth Clark, and I’m thrilled to serve as the 2025 LPA intern! I was born and raised just outside of Dallas, Texas, and spent my childhood and adolescence creatively writing, performing in musicals, and forming lasting relationships (my middle school friend group is still going strong). 

I attended college at Sewanee: The University of the South, where I studied psychology and earned minors in Religious studies and Classical languages. During my time at Sewanee, I was privileged to work in and help create the Civic Action Lab as the lead research assistant through the psychology department. Under the guidance of the lab’s fantastic head researcher, I honed my skills in participatory action research.

As a part of the lab, I was introduced to the awesome work of the young people in Nashville, TN, who were a part of the Nashville Youth Design Team (NYDT). My work involved mixed-methods research on the youth-participatory action civics curriculum in Nashville middle schools, from which all teen members of the NYDT had to graduate. Through this experience, I learned firsthand the power of young people to make real positive change in their neighborhoods and the world. 

This led me to attend American University for a Master's in Ethics, Peace, and Human Rights, where I’ve just finished my first year. My studies have taught me to translate my learnings from psychology into ethical policy interventions with youth and other populations. Crucial to this is my certificate in Social Innovation for Global Impact, which emphasizes cutting-edge, bottom-up innovation through various sectors and business practices. Through this certificate, I will develop my master’s capstone around building a product that helps young voices be amplified in social justice movements. This product will help build a toolkit for young people to engage with social justice and make long-lasting change. After graduation, I hope to continue my education and research by pursuing a Clinical/Community Psychology Ph.D. program focused on youth empowerment and trauma.

I chose to accept this internship at LPA because I have a deep passion for youth empowerment, development, and engagement in positive social change. With my background and interest in youth action civics, I see the high stakes ahead for amplifying youth narratives through storytelling and artivism to nurture positive social change. I am also passionate about leveraging young people’s stories that can positively impact their generational legacy. I am thrilled to start chatting with teens about their work in advocacy and how they choose to incorporate their stories in their work. 

A little bit about me personally is that I live in D.C. with my boyfriend, Patrick, and our princess cat, Luna. I love most genres of music, but always come back to showtunes and choral pieces when I need to feel connected. I was a fitness instructor at Sewanee, and now I am attending classes at Pure Barre (ballet-informed stretch and strength exercise chain) to learn new movements and meet new friends. I have celiac disease, which means I can’t eat gluten, but I have learned how to bake gluten-free goodies that even my gluten-eating boyfriend loves. I have a love for travel and all forms of storytelling, art, and performance. You’ll see me every weekend in D.C. at Eastern Market sipping on a frozen limeade and browsing local vendors!

If you’re interested to learn more about me, my time with Living Proof Advocacy, current Broadway obsessions, or information about my education or the Nashville Youth Design Team, please feel free to reach out!

Email: AnnieBeth@livingproofadvocacy.com

LinkedIn: www.linkedin.com/in/annie-beth-clark-80a123291 

Programs: https://www.instagram.com/civic_action_lab/ & https://www.american.edu/cas/philrel/ephr/ 

NYDT: https://youth.civicdesigncenter.org/

Photo credits: The Fanconi Cancer Foundation

How did the FCF patient advocacy program come about?

The program was about two years in the planning. One of our core initiatives at FCF is to make everything patient-centered. We want the individuals with FA, their care partners and families involved in every part of our mission. That means research, clinical trials, legislation and advocacy, ensuring that their needs and voices are always heard.

Patient-centered care and patient-centered research has been an important concept for the past 20 years, but in the past 10, it's become accepted as what should be the gold standard. 

That’s what we wanted for a formal advocacy program as well. Plus, we felt very strongly that advocates should be compensated for their time.

We also knew that we wanted to provide training on telling personal stories and doing speaking engagements. I dug through a lot of resources and talked to other organizations and that’s how I found Living Proof Advocacy (LPA). After our initial meeting with LPA, it was very clear that we were a good match. We also got amazing feedback from organizations that had worked with LPA.

So we made a plan and then took it to the board. It was well received and now, as they see it in action and hear feedback from researchers and people who have used the program, they have even more confidence in the program.

What kinds of things were you finding out from other organizations when you were doing your research? 

We couldn't find anyone that was doing exactly what we wanted to do. A lot of people had speakers bureaus or large groups of advocates. But, as far as I could tell, nobody was actually compensating their advocates. Also, many were larger organizations with one person whose only job is to run the advocacy program. But we’re a small nonprofit with only a staff of 12. The advocacy program is not my only job; I oversee many programs. So in our case, we had to work smarter, not harder. We knew we needed to pull in some resources. 

I think that's why LPA’s multi-year support was so perfect for us. They got us started and now we are self-sufficient and moving forward. The first year, LPA did the fundamentals training for our advocates; this year we did the training on our own. 

How did that go?

We were a little nervous since it was our first time, but it was very well received. The LPA resources were invaluable. I now have all the little techniques, I know what to listen for, like when an advocate needs to point to the positive.

There also was an LPA coaching refresher scheduled a week before our program began, and it happened right at the perfect time and was just perfect preparation for our program. I watched the recording of that call and took notes the whole time. It was extremely helpful. 

What’s the impact you’re seeing on your advocates and the program?

Especially in the workshops with the advocates, there are definitely some “A-ha moments.” when they are telling their stories. As a coach, I have the chance to say, “Coming to you from the listener’s perspective, this is what I heard.” And they're like, “Oh, I didn't even think of that.” It makes them think differently and focus on their call to action. 

We've had a few of our advocates go on to do legislative advocacy. One has spoken at conferences and with pharma companies. She said to me just a couple of months ago that she probably would never have done this if she hadn't gone through the training. She didn't have the confidence before. 

I think that people who go through the program are just more thoughtful about their advocacy. I can see the change in the advocates week to week as they're getting and hearing the feedback. 

But for us as an organization, the major thing is sustainability. We have five certified coaches who were trained by LPA, and as time goes on, we’ll be able to train additional coaches ourselves. As opposed to a one-time thing, the multi-year contract enables us to have continuity.

Also, the multi-year support has enabled us to expand our partnership with LPA. This year, since we're training the advocates ourselves, LPA is available to do advocacy training for our board members. 

Moving forward, what are your goals for your patient advocacy program? 

We want to expand our presence in research and have advocates involved in the research process from the very beginning. This year at our annual conference, we’ll be integrating advocates in several different ways to market the program.

Legislative issues are hot right now, too. We're looking into creating some advocacy toolkits for the general community beyond just the advocates so that we can help more people feel more empowered to make change in that way, too.

ABOUT THE FANCONI CANCER FOUNDATION

CONTACT LPA ABOUT MULTI-YEAR SUPPORT

In what way does your work relate to storytelling for advocacy?

Personally, my own advocacy journey started when my son was in school and I needed to advocate for him throughout his education. He had special needs that were somewhat invisible and although he had diagnoses to confirm his special needs, the school system would not accommodate them. As a nurse I've been advocating for individuals my entire career. I’ve also advocated at the North Carolina state capital in Raleigh, sharing stories with the legislators of how low staffing at hospitals puts patients at risk.

In nursing, advocacy is a huge part of our responsibility. Advocating for patients is one of our biggest roles–advocating to patients’ families, to their provider or physician, local and state government—and sometimes advocating with the hospital system itself. 

For example, we had a patient who was dying and he wanted to see his dog. And we made it happen. We had to petition the administration and get all these approvals to be able to do that. He was hooked up to many, many machines and we needed six personnel to take him out to the loading dock to see his dog. But we made it happen. 

On any day, I could probably give you four examples like that. As nurses, we have all these stories about the people we care for at their bedsides, 24/7. 

And storytelling is so important at any level of advocacy. But nurses need to learn the skills of storytelling. It usually makes me nervous when someone in the media puts a microphone in a nurse's face. The nurse might be at the end of their shift, tired. So it’s not always well thought-out because it's spontaneous. A lot of times the point gets lost in the telling of the story, and it’s usually because of the emotion involved. 

Having been through the Living Proof Advocacy coaching program, I know that there's a method to storytelling that is important to getting your point across and pointing to the positive.

How do you incorporate Living Proof Advocacy principles or tools into your work?

In my classes, when we cover advocacy, I have students imagine speaking with a legislator. They pick a topic that means something to them personally, then advocate for or against it using their personal stories.

I have them work with LPA’s “Brief, Brisk Advocacy Blueprint.”* That template helps students work through the process of preparing much more quickly because it’s focused on what they want to accomplish to communicate effectively with the legislator. It also helps them stay within guardrails. They have limited time to make an impact, so the guardrails help them manage their story. 

They really like the template and feel like they grow by using it. They feel more empowered. They feel more in control of their story, and that's really a big deal. I've also presented on the Brief, Brisk Advocacy Blueprint* at conferences to help nurses learn the storytelling for advocacy method.

I’ve also coached a friend who had to advocate for her son when he was in rehab and she wanted to share her stories with other parents. I used LPA methods to help her focus on her reason for speaking, manage her emotions and point to the positive.

It’s always about helping people remember that it’s not just storytelling, it’s storytelling for advocacy.

LPA’s Tips and Tools for Youth Advocates

supporting the next generation of change-makers as you move forward on The Advocate’s Journey.

Jacob’s Story

When Jacob Smith was a high school junior in Whitehouse, Texas, he was active in debate and Family, Career and Community Leaders of America (FCCLA), where he learned about advocacy. But his advocacy wasn’t personal—until one April night.

Returning from an FCCLA conference, Jacob and his classmates were hit head-on by a truck going the wrong way. He suffered severe spinal, facial and brain injuries and was told he might never walk again. After months of intensive care and therapy, he was determined to recover.

During his healing, Jacob realized his story could raise awareness about road safety. The truck driver had been distracted and had two prior DUI convictions. Jacob thought of others who might suffer like he did and made a choice: to get better and help others make safe decisions.

Two years later, he began speaking at schools and churches, sharing his story. But he soon felt something was missing. He remembers, “People would invite me to speak and say, ‘We want you to come tell your story.’ And at first, that’s just what I did. I would tell what I was like before the crash, then jump to the crash, and then finish with how I am now. It was just my story of being in the crash, from beginning to end. People felt bad about what happened to me, but there was nothing that made me feel like I was doing anything to help them. So, that made me stop speaking and take a break to regroup.”

During his break, Jacob thought a lot about his role as an advocate. He said, “I started to question myself: Why am I telling my story? Why do people want me to tell my story? Who am I telling my story for? I came to the realization that this had to be about more than just me and the crash.”

What Jacob realized was that what he needed to do with his advocacy was to FOCUS IT—which is the first key to telling your story to drive change.

Why Focusing is Key

Remember that Storytelling for ACTION means that you want your listeners to be more than just be engaged with your story or interested in your story or even entertained by your story; you want them to be MOTIVATED TO DO SOMETHING that will help bring about positive change.

That’s exactly what Jacob realized. He wanted listeners to remember more than the fact that he was in an awful crash, suffered terrible injuries and regained his health. He wanted them to help DO SOMETHING about road safety—like asking whoever is driving the car you’re riding in not to look at their phone or text while they’re at the wheel.

Like Jacob, your advocacy will become stronger the more you focus it—when you step back and ask: “What am I trying to do? Who do I want to reach? What do I want to say?

Your storytelling becomes Storytelling for ACTION when it focuses on these three things:

1. Your goal: what you want to see happen.

2. Your audience: who you want to reach.

3. Your messages: what you want people to take away from hearing your stories.

In our next post, we’ll take a look at each. Find more Youth Advocacy Resources here.

Each year, our pro bono program, LPA-BEYOND, supports organizations working in specific advocacy areas. This year, our focus is on those taking climate action.

Why? Well, beyond the obvious urgency, there’s this:

At LPA, we know that a key quality of a compelling advocacy story is its ability to point to the positive. By spotlighting hope and resilience alongside challenges, we forge pathways for change rather than despair.

Research shows this is especially true for climate action. Doom and gloom narratives aren’t driving the change we need. Instead:

… invoking hope, empathy and shared experience in communication on climate change, rather than fear alone, can be potentially far more motivating. [S]tories of human triumph over climate adversities, of which there are many global examples, have the potential to educate, inspire and contribute to driving transformational change…[1]

Personal stories of hope, collaboration and tangible collective action inspire us to envision what’s possible when communities unite against climate challenges.

Are you telling positive stories to drive climate action?

What do these powerful stories look like? How can they be shared—in the media, in town halls, or over kitchen tables—to spur real climate action?

If your organization is exploring these questions—or if you know of an organization—apply or nominate a group for this year’s LPA-BEYOND pro bono support.

We’re accepting applications and nominations through April 25 for organizations working on climate action, whether that means environmental justice, climate resilience, sustainable development, climate equity or other aspects.

The only requirement is that the organization is interested in amplifying stories from lived experience. Two organizations chosen randomly—though with geographic diversity in mind—will receive support following Earth Month (April).

Read more and apply—or nominate—for free support here.

[1] Asif Husain-Naviatti, The power of human narrative: Inspiring action on climate change, Environmental Science & Policy,Volume 163, 2025, 103954,ISSN 1462-9011. Accessed online 2.23.25

At Living Proof Advocacy, we often describe our role as “the advocates’ advocates.” How do you position yourself in support of young people?

I’m their megaphone and I work FOR them. I tell each of the hundreds of kids I’ve worked with: “Let me know what you want to do—and we’ll go do it. What do you want for your life?” I always have them tell me what they wanted us to do together.

Sometimes they just want to have a better life than the people around them. Sometimes it’s about advocacy and speaking up for change so that kids coming up through the same systems they did won’t have to deal with the same things they did. For example, with foster kids—who are often demonized or treated like they don’t know what they’re talking about—it was my job to help them face a room full of adults and make sure their voice was heard and their perspective was understood in that room.

We imagine that takes a lot of trust.

This is where sharing my own lived experience factors in. 

When I was working with young people and their mental health, I knew the only way to engage with them would be to share my own experience. To connect. I had to lead with my struggles, which involved depression and some substance stuff. I also struggled with suicidal ideation for a good seven years or so. People have also been killing themselves on me since I was 14 years old. I've lost five people to suicide in my life. Even as recently as 2021. Not to mention regular garden-variety death. 

I've struggled with a lot of things in life. And I'm not ashamed of any of it. It's who I am, for better or worse. Perfection is fiction. Our imperfections are often how we connect to other people. They're our tools for building understanding and creating community. 

And the stuff I struggled with is what many of these young people were dealing with too, and what they were supporting each other to get through. I had to be honest about my own experience and my own struggles. Because young people smell bullshit like dogs smell fear. They know when you’re trying too hard, or faking it. You have to be your authentic self. They will respect that.

But we all have different experiences and perspectives. For example, I wasn’t a foster child. I don't know that experience. I’m transparent with them about that. But sharing our experiences helped me understand that while they have a unique experience that I don't understand, I can understand their anxieties and depressions. I totally get that. 

My whole world now is about being supportive by sharing experiences.

Once young People understand how they can connect with others by sharing their lived experience, how do you help them use that power to drive some kind of positive change?

Honestly, that can be tricky. When I started to work with kids in the foster care system I realized they usually go one of two ways: they’ll either shut down and not want to talk about their experience or they’ll share their experiences almost for shock value. Because they’ve had to share the ugliest parts of their lives so many times, with so many people, it almost becomes a spectacle. They want adults to get slapped in the face with the fact that this was their experience—and it hurt. I could see why they would want to share the ugly parts of their lives to cause that shock. Because we judge them like they're bad kids, like they did something. 

So for me, I get them to express those feelings, whatever they are. I encourage them to really dig into those feelings. I tell them: “You can yell, scream, spit, swear, kick and do whatever you want to get your stuff out there.” Then after the ‘kaboom,’ I ask, “So, what would make it better? Do you want to create change for yourself?”

When they say “yes,” then it becomes about advocacy. 

All of those feelings indicate where the passion is. Where the motivation is. You need to get at those and not be afraid of how loud or expressive it gets. That's where passion can turn that experience into something productive.

What we call “pointing to the positive.”

Exactly. People think advocacy means being a pain or being mean. Sometimes there are advocates that shame people and make people feel bad. I believe advocacy is about making friends. Creating understanding. If you shame people into change, they're only making that change once. If you help them understand why, and how it is beneficial, the change lasts. I often ask youth, “If I had walked in the room the first time we met and told you to ‘Sit down, shut up,’ then told you what to do, what would you have done?” Nine times out of ten, they say, “I would have told you to go f*** yourself.”

Right. So, what makes you think adults wouldn't feel the same way? How do you think that’s going to go?

So, what are examples of when youth had found their voices for successful advocacy?

One program I worked for has a youth conference every year for kids who've been involved in the foster care system. For several years in a row, one of the workshops let you talk to a commissioner from the Department of Children and Families. All these kids in the foster care system had an audience and were able to really tell them what their experiences were and how they felt. Some of that resulted in getting a grant to buy luggage, so kids were moving from house to house with luggage–with dignity–instead of trash bags.

And thanks to 60 or 70 young people that showed up at the legislature with prepared speeches, the Youth in Transition program went from operating on a federal grant that was ending to being funded with state dollars and sustained as a program. And we owe that to those youth that stepped up and showed up for us (the adults) that day. 

What was the path leading to the work you are doing now?

I’ve had a remarkable career collaborating with amazing colleagues and clients that I have worked with, and for, as a consultant.  Much of my experience has been in healthcare, predominantly for the drug industry at several global and boutique PR agencies doing media relations. A key component of my work entailed working with patients and advocates to help share their experience—whether that be the journey to their diagnosis, their current treatment, their role as a caregiver or their participation in a clinical trial for a new treatment option. These patient and caregiver experiences brought the client’s data and product “to life”—literally and figuratively.

A particular project in 2019—working with patients who were advocating for additional mental health treatment options—cemented my opinion of the importance of message and messenger, and the value of authentic first-person narratives, which in turn led me to Living Proof Advocacy. The LPA training really opened my mind to a valuable perspective, one that truly puts the patient voice in the center of the storytelling process.

How has that shift changed your work?

My role as a coach is to provide insight on how to tell an effective story—with a beginning, middle and end. One key to doing that is providing a supportive and empathetic environment that empowers the speaker to own their story and allowing them to choose the level of detail that they are most comfortable sharing. I approach the coaching process in a protective way. I think about the patient's story as being so special to them.

I also see my role as helping to ensure the story is shared at the right time, in the right place whether that is at a medical conference, a media interview or a social media post, and with the right audience—really focusing on who needs to hear it, so it has the impact the advocate wants it to have.

How do you help move advocates from a “raw” story to one that can have the desired impact?

Oftentimes advocates or those with lived experience don't know what parts of their story the audience needs to hear or where it should begin. For example, their natural tendency is to tell the story in chronological sequence. So, the first step in the process is letting them share their unstructured, free-flowing story. We spend an hour together and they share their experience.

Everybody knows their own story, and it always makes sense to them, but for the audience to engage, the story needs to follow a structure. In the LPA certification training you learn to help advocates hit the “sweet spot” of telling a well-told advocacy story—one that will move listeners from apathy to empathy to action. Step two is asking guided questions. Knowing the right questions to ask is an integral part of coaching that helps frame the story and provides guardrails; asking for the pieces of the story along their story arc that will bring the audience along.

For example, I recently worked in the maternal mental health space, where very often the stories were extremely personal stories that women may not want to recount because of the trauma, shame and stigma associated with the disease. The retelling of a painful experience could be triggering. The LPA training enabled me to guide them toward a perfect balance between an emotionally raw story and overly prepared and rehearsed version. The well-prepared advocate story is both authentic and focused on a goal—not just moving audiences but motivating them to act

I would let them know that not everything that is part of their journey needs to be shared. There are certain things you may want to hold back and that remain sacred.

Having agency over your experience and knowing that you don't have to share everything to get to a point is so important and acknowledging that builds trust between the coach and the advocate.

What are your future career plans to leverage your LPA training?

My goal is to provide a strategic process that couples the training that I've received from LPA and my media expertise to bring advocacy organizations and companies together to achieve business goals.

Using the right story at the right time for the right purpose, rather than getting a patient story and checking a box. I see an opportunity to be the conduit between industry and advocacy by putting the patient voice in the center and allowing patient authenticity to shine through.

Reach out to Becky here.

From June through August this year, I had the incredible opportunity to witness the inner workings of this unique organization, Living Proof Advocacy (LPA). 

The LPA team, led by founders Tim Cage and John Capecci, is a small, dedicated group of individuals who amplify advocates' voices. I was fortunate enough to work closely with marketing team members Katy Spencer Johnson and Jack Clark. Our meetings focused on how we could best promote advocates and their missions through teamwork, graphic design, outreach, testimonials, campaigns and social media. I was privileged to sit in on discussions surrounding blog posts, including one about Mindy Buchanan, an LPA-certified coach who helps individuals affected by myotonic dystrophy share their stories.

Throughout my time at LPA, I learned that stories are not just narratives—they are powerful tools for driving change. The work I participated in has the potential to influence policy, challenge stigmas and inspire others to take action. I also gained valuable insights into how to ethically and mindfully amplify the voices of various communities during awareness months—avoiding superficial gestures like simply changing profile photos instead of providing meaningful support to organizations.

I also contributed to launching the brand-new LPA Youth Advocacy Project. This initiative amplifies the voices of young advocates, 19 and younger, sharing with them the strategies that work best to make their efforts truly impactful.

My favorite part of the internship was connecting with and learning from numerous young advocates. If you ever feel disheartened by current events, I highly recommend doing a quick search on youth advocates in your area. It’s incredible what young people are accomplishing in the face of older, more experienced stakeholders. I was fortunate enough to interview mental-health and climate-change advocate Kripa Kannan about her advocacy work and what strategies have been effective for her. We discussed how interconnected everything is—how issues like mental health and climate change, though seemingly different, are deeply intertwined as young people grapple with the lack of initiative regarding climate change and its impact on their future.

My time at Living Proof Advocacy was an eye-opener. I learned so much about the real impact of storytelling and how genuine advocacy can truly make a difference. I came to understand that advocacy isn't about speaking the loudest—it's about speaking from the heart. The skills and connections I’ve gained will definitely stick with me as I move forward. I’m excited to keep pursuing advocacy and remembering skills taught by LPA throughout my career.

We had the pleasure of speaking with Kannan about her advocacy stories, experiences and insights.

What prompted you to focus your current advocacy efforts on mental health and access to education?

My focus on mental health started right after COVID. One of my close friends was experiencing a lot of mental health struggles at the time, and there was no one really to talk to about that. There weren’t a lot of resources available. It's hard for some youth to get help, especially when they are still dependents. 

So I want to raise awareness about the importance of having more accessibility and resources—also reducing stigma. I am from the Indian/South Asian community and mental health is so stigmatized there. 

My education advocacy started after hearing my parents' story. My parents immigrated from India twenty years ago. They both grew up in poverty and had to try really hard to get an education. My dad often didn’t have enough food to eat, and my mom didn’t have safe shelter from the extreme weather. They came to the United States and sacrificed to give me, my brother and my sister a better education. 

Hearing about their experiences growing up instilled a deep empathy inside me for people going through similar experiences. Along with that is a sense of determination to address those systematic inequalities that are unfortunately present in a lot of communities. This personal connection to poverty, health and well-being really gave me the drive to make a difference. Whether that be working with my nonprofit or advocating for mental health and education in the public eye.  

Do you share these stories publicly when you’re advocating for these issues?

Yeah, definitely. I think the best form of advocacy is storytelling. It makes your voice so much more powerful. Stories stick much better with people than just stating the hard, cold statistics. So I advise others: if you have lived experiences and you’re comfortable sharing them, definitely go ahead. 

We often compare sharing personal stories publicly to “stepping through a doorway.” Some people step through easily, but most have to pause and think about this significant step. How has it been for you and what would tell someone thinking of sharing their stories?

I've always been a very extroverted person, so public speaking was never difficult. I did speech and debate all throughout middle school and I did poetry slams. So I was very exposed to the public speaking realm. But it’s different when you’re sharing something you really care about. That was the hardest part I had to overcome. 

So, I didn't actually start out being vocal about my stories in front of people. I started with blog posts because, for me, it was easier to write it. For a while, I just kept them to myself and didn't send them out anywhere. It was more of a journal. Then, when I was reading it over, I thought,  “This might be helpful for other people.” 

It’s only recently, within the past year, that I’ve started opening up more publicly, speaking at events. Obviously, it's hard at first when there are hundreds of people in the audience and you're making yourself vulnerable. Stepping through that doorway took a year and a half or two years. It definitely wasn't easy, but I'm glad to say I'm through it now!

I know how scary it is to have your friends know about something that happened to you or to your family and have people you go to school with every day see what you're doing and repost it on social media. So first, I would just say that anybody doing this is brave for even thinking about it. The biggest thing is just edging that door open and sticking your foot out because there are so many issues that aren't spoken enough about.

And once you get a toe through that door, there are a lot of opportunities that open up for you, whether that be leading a local club or being on a youth board, or speaking on a national council.

Do you find people are receptive to listening to youth advocates?

It's hard because sometimes youth just get put on some panel so people can say,  “Yeah, we have youth in our organization.” It's sometimes hard not to feel tokenized. The way I've combatted it is by entering the room and knowing that I deserve to be there. Others in the room could have, like, 30 or 40 years of industry experience under their belts. And I just graduated high school. So it's definitely a hard place to put yourself in. But youth need to be at that table, sitting with executive leaders, emphasizing that we have a very different perspective and they can't be making decisions for us. We should be able to have a voice and be able to influence decision-making.

Do you ever encounter an attitude of hopelessness, or even cynicism, from your peers? 

Yeah, it's kind of hard to see the impact of your advocacy when you're doing it on a very small scale. So, I am trying to emphasize that even if you do one small thing, it could have a chain reaction, and it could help so many more people. 

Always focusing on the negatives makes it seem like there's no hope, and there's no point of even trying to take up advocacy and trying to make a change because it seems like nothing's ever going to get done. Everyone is very anxious about how our climate and our world is going to look in the next few years, but if we do act now, so much is possible. 

You can just start small. If you’re having trouble finding those opportunities to speak, just making simple reels or TikTok videos or maybe just starting off with a blog might be easier to express yourself. Maybe talk about it anonymously—that's still impactful. Go at your own pace. I mean, you can't speed this up.

We recently spoke with Mindy about advocacy, storytelling and the value of coaching. 

What is your personal journey that led to the world of advocacy storytelling? 

While I’m not personally affected by Myotonic Dystrophy, for many years my work has been with communities experiencing chronic, short-term or terminal illnesses. My role usually involves getting people to talk about their lived experience so we can understand more about a condition, offer support and advocate.

My early experiences were with the use of personal storytelling to understand experience. Storytelling to understand experience can look like a lot of things: fiction, poetry, a biography. But the goal is an internal one, to make sense of what's happened to you.

For example, I led a writing group for adolescents and young adults with cancer. We published a paper about the usefulness of having storytelling and writing as part of an adolescent support group, because that particular group doesn't typically engage in traditional support programming. So you have to find other ways to support them. That writers group has actually continued on beyond my tenure and it still goes on today. 

From there, I moved to another organization for adolescents and young adults with cancer and that’s where I learned about crafting storytelling for advocacy purposes or storytelling for impact, versus it just being a cathartic or therapy-based activity. The point of advocacy storytelling is different. With advocacy storytelling you're explicitly trying to effect change in a room or within a person.

I also was a fellow with an organization called A Fresh Chapter. With this organization, I was in Kenya for two weeks and we were training and working with Kenyans who are running their own programming for people with cancer in order to help them gain funding or support from their governments. 

It was my work with the Foundation for Sarcoidosis Research (FSR) where I was first introduced to Living Proof Advocacy (LPA), when we hired them to do coaching for our patient advocates. I really liked the LPA Whole Advocate model of storytelling for impact and it seemed like a natural fit for me, so I became a certified coach and began coaching patient advocates at FSR.

Having had both of those kinds of storytelling training—storytelling for understanding and storytelling for action—I coach people along the journey from processing a story to using that story as a tool to create change. Sometimes you can tell people haven’t processed their experience yet and that needs to happen before they can really start digging into their advocacy story.

What do you see as the value or impact of coaching people on their advocacy stories? 

I think a lot of organizations don't spend enough time honing storytelling within their communities. I think they let the community just “say their story.” But when it’s crafted, when you have a very specific call to action or talking points that you are working into an otherwise very organic telling, that's when you hook people. It’s the most powerful way of making sure people listen and take action.

And for the storyteller/advocate, it creates confidence. I see a lot of people who want to tell their story, but they can be all over the place and, as a result, lack the confidence that their story can be engaging and impactful. They see others doing it, so I encourage them to ask, “What’s good about it? What is that person doing that you can’t do?” The answer is nothing. It just takes focus, framing, practice. And that’s what the LPA approach does. It helps people tell their story in a pointed way that gives them confidence that they wouldn't otherwise have.

For example, I’m working with a caregiver right now. Her goal is to raise money for a program that serves caregivers for people with type 1 myotonic dystrophy.

I've worked with a lot of caregivers in my time and I've been in the public health space for almost 20 years. And what you most often hear from them is the story about how their loved one became sick and all the things that happened to them following diagnosis.

What is harder for caregivers to talk about is what happened to them. So, I sent her a copy of Living Proof and some tools, we did some brainstorming and she’s done multiple iterations of this story. Now, she's got it down to this really, really strong personal story. 

There's a moment in her story where she talks about trying to wrangle all of her family’s luggage through airport security because her husband can't do it, her in-laws are elderly and she has a small child with her. It’s in that moment realizes that she's alone to do all of this. 

But that wasn't the first thing she talked about. Her story started with her partner’s experience. It took some work to get her own experience into the forefront. While caregiver stories are intrinsically tied to the person they're caring for, they still have their own experiences. Living Proof Advocacy has been the most helpful model for getting caregivers to think about their own stories. 

It's asking the question, “What do you want the audience to think about you coming away from this moment?” When you ask someone that question, it helps them shift their mentality from their loved one's story. In her case, she said, “What is my story? Because I don't want people to come away just with what my partner's story is. I want people to come away with what my story is because what I'm asking people to do is to give us money to create respite programming for caregivers.”

I've watched it happen for people in real time. It's almost like this tiny physical thing. Even on Zoom, you can see it. It's that moment where all of a sudden the light goes on—and they see the core of their advocacy come to life.

To read more about myotonic dystrophy visit https://www.myotonic.org/

Devane Murphy is the Associate Director of Debate at the University of Kentucky and a diversity expert with a specialty in nonprofit management. Devane was selected to take part in the first 2024 cohort of the LPA All Voices professional development program.

I spoke to Devane about the experience and where it may lead him next.

What drew you to apply for the All Voices program?

The thing that drew me in was that the program’s mission was very much in line with the things that I do in my day-to-day and in the lessons I try to instill in my students. I thought that the skills I’d learn in the program would be skills that could apply to a myriad areas of my life.

What was the experience like for you?

It was intense. Because it was 8 weeks straight. There's a lot to learn and there's a lot of content that we covered. But I really liked the pace. It never felt rushed. 

I was surprised at how different the advocacy examples were that Tim and John brought in. I didn’t expect that. Like, one of the exercises we did had us watching videos of advocates and talking about what we thought about them.

There's one person that was talking about his daughter dying. Another speaking about gay marriage. Another about heart disease. Another speaking about homelessness and drug addiction. This wide net of advocates. And here are these principles that we can apply to vastly different backgrounds and issues. I didn’t feel like I was learning that there was only one type of advocate. It was refreshing to see that.

I also had a great cohort. Working with Calondra and Jess was awesome. They both provided a different level of experience because they both do very different things. Calondra owns a consulting agency for nonprofits, so she's very much thinking about how to incorporate this into her business structure. Jess was working on a bunch of public advocacy talks while we were in the cohort. We were able to go over what Jess was going to say, workshop it with them and then watch them practice.

In fact, my favorite day of the program was actually a session where it was just me, Colondra and Jess. We knew a lot of the content by this time and so we were just pitching ideas, talking back and forth with each other. Kind of a round-table discussion about how we intend to incorporate things and ideas we were thinking about. It was really great to bounce ideas off of other professionals and learn from each other.

So, how have you implemented or plan on implementing what you learned in All Voices?

I'll be teaching classes in the fall on public speaking and argumentation and I’ll be using a few different things from the training in my classes. One thing in particular is LPA’s Whole Advocate model [https://www.livingproofadvocacy.com/our-approach]. I love that. It will be one of the first things that we go over in my class: how we’re going to be respecting each other and respecting personal experiences.

And there are two exercises that I really wanted to build on: The Six-Word Reason exercise and The Story Map. The Six Word Reason exercise is going to be something that I will 100% use in my courses.

The exercise was such an intuitive way of getting me as an advocate to say, “I know that I love all these things and I know that I'm like passionate about all these things, but what if I could reduce what I'm passionate to this small thing and identify and particularize what it is I am passionate about? What do I want my advocacy to be about?”

And The Story Map is kind of like a “living exercise.” It's one that I constantly come back to, add to, revise, improve upon, pull from.

Those two exercises will probably be some of the earlier lessons in my syllabus to help students have a path forward to the end of the semester, where it culminates in a big public advocacy talk. Having the Map and the Six-Word reason in the first two to three weeks will ensure that by Week Eight they'll know exactly what they need to write.

Now, having finished the All Voices program I'm pleasantly surprised that not only do I find myself coming back to the LPA textbook, Living Proof: Telling Your Story to Make a Differece, but as I'm writing the syllabus for my class, I'm going to be using tools in the online Coaches’ Portal that I now I have access to. I think that these are really big pools to draw from.

Learn more about LPA’s All Voices program.