GSF’s goal is to raise $200,000 before the end of 2010. Today, they announced that they have reached the halfway mark.

From GSF:

Less than TWO months after launching our “$200K For SMA” fundraising campaign in support of promising SMA focused gene therapy research at Nationwide Children’s Hospital and The Ohio State University, friends, families, colleagues, coworkers, communities, and total strangers across the country - some impacted by SMA and many not - have come together to organize and execute an impressive laundry list of wonderful fundraisers totaling over - DRUM ROLL PLEASE - One Hundred Thousand Dollars. That’s right. $100,000!!! In…just…TWO…months.

There’s just no other way to say it - what’s happening here is incredible, inspiring, and humbling. And we are personally honored to be part of all of this positivity - it fuels us to push forward and do more. At our core, we’ve always believed in the power of the individual. And as individuals, if we collectively work together in a positive, productive fashion, we can have an enormous impact and change the status quo.

Click here to read the full announcement.

A huge “THANK YOU!” goes out to everyone who has been involved in raising funds for GSF’s “$200K for SMA” (read the list here) and FightSMA’s “Realizing the Dream” - campaigns worked together towards the same goal: to bring SMA gene therapy to clinical trial.

To read the article, click here.

Exceptional, Unconventional Research Enabling Knowledge Acceleration (EUREKA) (R01)
Application Due Date: October 21, 2010
Solicits proposals for exceptionally innovative research on novel hypotheses or difficult problems, solutions to which would have an extremely high impact on biomedical or biobehavioral research. Support may be requested for up to $800,000 in direct costs (excluding consortium F&A) over a four-year period, not exceeding $250,000 (direct costs, excluding consortium F&A) in any one year. (Note, that over the last three years the EUREKA mechanism has had a success rate much more in line with standard R01 applications. Each of these offers an opportunity not as easily addressed in regular NIH funding mechanisms.)

NIH Common Fund Transformative Research Projects Program (R01)
Application Due Date(s): October 27, 2010
Solicits applications proposing groundbreaking, exceptionally innovative, high risk, original and/or unconventional research with the potential to create new scientific paradigms or challenge existing ones. Budget requests should be commensurate with project needs for up to a five-year project period. Up to one third of the budget for this FOA will be reserved projects exceeding $1 million dollars in direct costs.

Scalable Assays for Unbiased Analysis of Neurobiological Function (R01)
Application Due Date: November 17, 2010
Solicits applications to develop novel, robust analytical platforms using in vitro assays to reveal changes in neuronal and/or glial function. The goal is to adapt state-of-the-art measures of basic cellular processes or molecular events that are key mediators of brain function with the intent to probe mechanisms and/or perturbations in an unbiased and efficient manner. The novel assay platforms would provide opportunities to measure neurobiological endpoints and build a pipeline to be used in the context of target identification and drug discovery.

In addition, Families of SMA, FightSMA, MDA, and SMA Foundation will be sponsoring a satellite event. Entitled “Nucleic Acids to the Rescue: Gene and Antisense Oligonucleotide Therapies for SMA,” the symposia meeting will be held Monday, November 15th at the Manchester Grand Hyatt, just a block from the SfN meeting site. (This event is not sponsored by the Society for Neuroscience.)

Click on the image below to view the save the date.

According to Dr. Chris Lorson, FightSMA’s Science Director and also an author of one of the studies, “collectively these results highlight the importance of additional tissues in SMA that may contribute to the overall pathology in SMA - most likely in more severe cases. This is especially important when developing and testing potential therapeutics in SMA models and as novel compounds progress towards the clinic.”

Click the links below to read the article abstracts:

• Lorson Lab: Cardiac defects contribute to the pathology of spinal muscular atrophy models
• DiDonato Lab: Arrhythmia and cardiac defects are a feature of spinal muscular atrophy model mice
• Kaspar Lab: Early heart failure in the SMNΔ7 model of spinal muscular atrophy and correction by postnatal scAAV9-SMN delivery

Thankfully, Zion Hoskins, just short of his second birthday, is doing well. His mom, Chelsea said, “It’s hard to watch him struggle. He’ll fall over, but he gets back up and keeps trying.” Even though Zion’s parents know that the future will likely include feeding tubes, breathing machines, and wheelchairs, they are optimistic that their son will have the opportunity to enjoy many of the same experiences as his peers. “It’ll be interesting to see how things progress,” Paul, Zion’s father, said. “I like to think Zion is going to prove all the doctors wrong.”

Read their story by clicking here.

From Nationwide Children’s Hospital:

Parent Project Muscular Dystrophy Awards $600K to Nationwide Children’s Hospital for Gene Therapy Study

Dr. Jerry Mendell Leading Follistatin Gene Therapy

Columbus, OH - 8/10/2010

Parent Project Muscular Dystrophy (PPMD), the largest non-profit organization in the United States focused on finding a cure for Duchenne muscular dystrophy (Duchenne), announced that PPMD will award a $600,000 grant to Nationwide Children’s Hospital in Columbus, Ohio to conduct clinical testing of a promising gene therapy technique for muscle disease.

Investigators, led by Jerry Mendell, M.D., director of the Center for Gene Therapy in The Research Institute at Nationwide Children’s Hospital with co-investigator Brian Kaspar, Ph.D, will inject a modified virus (vector) carrying the gene for the muscle growth-stimulating protein follistatin into the quadriceps muscles of volunteers with Becker muscular dystrophy and sporadic inclusion body myositis. The goal of the study is to verify that the procedure is safe and to document any increase in quadriceps muscle size and function. People with these diseases have overall muscle weakness but with particular weakness of the quadriceps muscle, which is important for standing and sitting. Preliminary studies in mice with muscular dystrophy and in non-human primates demonstrated that follistatin delivered in this manner can cause significant increases in the size of injected muscles. Improvements in the strength of the mice and non-human primates were documented.

PPMD funding for the project will cover the costs of manufacturing the clinical grade viral vectors, and the costs associated with the clinical testing. If the initial study is successful, the investigators will expand the research to a phase II study and will also make plans to test it in Duchenne muscular dystrophy and other muscle diseases. The first clinical studies are planned to start in early 2011.

“This is the first time a gene therapy approach has been used to supply genes that generically stimulate muscle growth rather than directly replacing missing muscle proteins,” explains Sharon Hesterlee, Ph.D., PPMD Senior Director of Research and Advocacy, “Other applications could include the treatment of muscles that have been injured directly through accidents or indirectly through disuse.”

To read the rest of the announcement, click here.

Click here to learn all the details of how to get involved.

At the beginning of October, the Center for Continuing Medical Education at Columbia University in New York will hold a course to update clinicians and caregivers about therapies in development, the new consensus on patient management, and ways to participate in upcoming clinical trials. Supported by a grant from the New York-based SMA Foundation, “Recent Advances in SMA and Other Pediatric Neuromuscular Diseases” will be held October 2nd and is “an intensive one-day course designed for medical professionals, including physicians, nurses, genetic counselors, physical, occupational, and respiratory therapists, with an interest in pediatric neuromuscular diseases.” For more information about the course, click here.

Later in the month, a three-day workshop (October 18-20) about conducting research on rare diseases and orphan products will be held in Rockville, Maryland. Sponsored by the Food and Drug Administration (FDA), agencies of National Institutes of Health (NIH), the National Organization for Rare Disorders (NORD), and Duke University Medical Center, the “Accelerating Therapies for Rare Diseases” workshop “focuses on FDAs regulatory requirements and the clinical trial issues that are especially relevant to rare disease research.” Speakers will include members of academia, government agencies, and the private sector. For more information about the workshop, click here.

Spinal Muscular Atrophy May Also Affect the Heart

Study details new findings in mouse model of disease; highlights existing gene delivery approach that may provide therapy

Columbus, OH - 8/11/2010

Along with skeletal muscles, it may be important to monitor heart function in patients with spinal muscular atrophy (SMA). These are the findings from a study conducted by Nationwide Children’s Hospital and published online ahead of print in Human Molecular Genetics. This is the first study to report cardiac dysfunction in mouse models of SMA.

SMA is a debilitating neurological disease that leads to wasting away of muscles throughout the body. Historically, scientists and physicians believed that SMA only affected skeletal muscles; however, new data suggests that this genetic disease may also impact the heart.

“A few studies regarding SMA patients have implicated the involvement of the cardiovascular and the autonomic nervous system,” said the study’s co-author Brian Kaspar, PhD, principal investigator in the Center for Gene Therapy at The Research Institute at Nationwide Children’s Hospital. “However, there have been few to no highly powered and controlled studies to determine how common these cardiovascular anomalies are in these patients.”

The reports of altered blood flow and slowed heart rate in some SMA patients prompted Kaspar’s team to examine whether a cardiac deficit is present in a mouse model of severe SMA, developed by Arthur Burghes, PhD, professor of Molecular and Cellular Biochemistry at The Ohio State University College of Medicine, which is routinely used for drug and therapeutic-based screening.

They analyzed heart structure of the SMA mice compared with normal mice, and found that there were significant structural changes occurring in the heart of the SMA mice, along with severely impaired left-ventricular function. SMA mice also had significantly lower heart rates. After examining the underlying structure of the mouse heart cells they found it similar to the cellular structure of a heart biopsy from patient with type 3 SMA.

To read the rest of the article from Nationwide Children’s Hospital, click here.

To read the abstract of the journal article, click here.

To learn more about gene therapy, click here.

To learn more about spinal muscular atrophy, click here.

• What is spinal muscular atrophy (SMA)
• The genetics of SMA
• The difficulty developing treatments for SMA
• The results AAV-9 has shown in SMA mouse models
• The need for additional studies before moving to human trials
• The next steps toward the clinic

The podcast is available by clicking here and scrolling to the May podcast. At the time of this post, there is a problem in how the podcast is available on the Nationwide Children’s Hospital website. The audio file has a comma added at the end of the file type which prevents players from recognizing file type. In order to play the podcast, simply download it to your computer, select the file name, and remove the comma. Your computer should then recognize the podcast as a MP3 file.

Recently, FightSMA launched the “Realizing the Dream” fundraising campaign which partners with the Gwendolyn Strong Foundation to advance a common goal: to bring SMA gene therapy to clinical trial. These efforts will support Dr. Kaspar and other collaborating scientists. To learn more about the gene therapy campaign and how you can get involved, click here.

• Edward Markey (MA-7th)
• Rich Boucher (VA-9th)
• Bart Gordon (TN-6th)
• Anna Eshoo (CA-14th)
• Eliot Engel (NY-17th)
• Gene Green (TX-29th)
• Lois Capps (CA-23rd)
• Tammy Baldwin (WI-2nd)
• G.K. Butterfield (NC-1st)
• Charlie Melancon (LA-3rd)
• John Barrow (GA-12th)
• Doris Matsui (CA-5th)
• Donna Christensen (VI)
• Kathy Castor (FL-11th)
• Ralph Hall (TX-4th)
• Fred Upton (MI-6th)
• Joseph Pitts (PA-16th)
• Tim Murphy (PA-18th)

In case you missed it, check out the previous post: “August Grassroots Update.”

It’s hard to believe that the summer months are quickly coming to a close. Many of you were just with us in Washington, April 27th for our Annual Conference, The Good Fight! We hope the summer has been fun, relaxing and restful for you all.

As we continue our hard work on the SMA Treatment Acceleration Act (H.R.2149, S.1158) and enter the month of August, we need your help. Elected officials in Washington represent our interests. We want to see a treatment and cure for spinal muscular atrophy (SMA). We need this final push, from August going forward, for Congress to pass OUR bill!

Every August, your Senators and Members of Congress head home for the district work period: a time to attend local events and interact with their you, constituents. This is a wonderful opportunity to see your Congressional representatives and ask for their help in passing the SMA Treatment Acceleration Act.

With November and elections just around the corner, time is of the essence. There are very few legislative days before the current Congress comes to a close at the end of this year.

Some of your representatives will be hosting “town hall” events or open houses where they welcome constituents - like you - to come and voice their top concerns. If you would be interested in attending one of these town halls to make your voice heard, you can call their district offices and ask if they plan on hosting a town hall or similar event. If not, find out if they will be attending local events where you might be able to speak with them: a festival, 5k race, opening of a community center, etc. You can even ask the district scheduler about making a specific appointment to see your member and tell your family’s story.

Remember: these Members of Congress are hired by YOU, the voter. They need to get face time with their constituents before Election Day in November. This is a wonderful opportunity to voice your opinion and support of the SMA Treatment Acceleration Act. They need to hear from you!

Once you’ve found an opportunity to meet your representative, what do you say?

• If your member is not a cosponsor, ask them to cosponsor the bill. Make it personal (i.e. tell your family’s SMA story/connection) and make sure to mention the name and number of the bill. (H.R.2149 in the House, S.1158 in the Senate).
• If your member IS a cosponsor of the bill, be sure to say “thank you!” Then, ask them to contact the Energy and Commerce Committee and let the committee know that passing the SMA Treatment Acceleration Act this year is one of their top priorities.

If you would like further talking points, or any question answered before meeting with your Member, FightSMA is here to help. Feel free to call Caroline Gibson anytime at 804-515-0080, or just send her an email at carolinegibson@fightsma.com. Caroline is here to to help you make this urgent and critical outreach.

Thank you all for your incredible hard work and dedication to seeing this bill through. We are a mighty army. United, we can and will see our dream come true: passage of The SMA Treatment Acceleration Act.

Yours in the fight,
FightSMA

In case you missed it, check out the follow-up post “August Targeted Grassroots Efforts.”

For more information about the event and how to buy tickets, visit the Laugh Away SMA website.

To read the entire article in Quest, click here. To read the abstract of the study, click here.

For more information about SMA and nutrition, check out the links below.

• “Spinal Muscular Atrophy GI and Nutrition Care” on FightSMA’s website
• “Investigating the Impact of Nutrition on SMA” from the FightSMA’s blog
• A Family Guide to the Consensus Statement for Standard of Care in Spinal Muscular Atrophy
  Published by The Patient Advisory Group of the International Coordinating Committee (ICC) for SMA Clinical Trials
• Consensus Statement for Standard of Care in Spinal Muscular Atrophy
  Prepared by the Standard of Care Committee for Spinal Muscular Atrophy, a standing committee of the International Coordinating Committee for Spinal Muscular Atrophy

Two of the panelists were Dr. Alan Guttmacher and Mr. John F. Crowley.

Dr. Guttmacher, who is the Acting Director at the National Institute of Child Health and Human Development (NICHD), spoke on the importance of SMA and SMA research to NIH and its officials.

Mr. Crowley, CEO and Chairman of Amicus Therapeutics, spoke about patient advocacy, and the admirable work and advocacy that FightSMA has exhibited over the years.

Click here to read the transcript of Dr. Guttmacher’s testimony and here for the transcript of Mr. Crowley’s testimony. For more information about the hearing, including the testimony of other panelists and video of the hearing, click here.

Requesting gifts from a foundation or organization or from a friend or relation is one way that supporters of the SMA community are channeling funding to SMA research. (Learn more about how to do this by clicking here.) But, for those who find this fundraising avenue to be inaccessible, there are other tools. These are just a few.

• Fighter Mom™ Manual - The Fighter Mom™ manual is a guide and reference tool to help mothers (and others) take on the challenge of “doing something” after they’ve discovered their child, grandchild, niece, nephew or special child in their life is battling any chronic and possibly life-threatening disease.
• Firstgiving - Firstgiving allows you to create a personal webpage to raise funds for FightSMA (listed as “Andrew’s Buddies Corporation”). Set a fundraising goal and then tell your friends and family by adding a link in your emails, website, blog, or social networking site.
• Causes - Are you a member of Facebook? If so, join the FightSMA (Andrew’s Buddies) Cause and you can use it to tell your friends about the “Realizing the Dream” campaign and engage them in efforts to collect donation for the fundraising project. (Have a birthday coming up? Use Causes to make a birthday wish for gene therapy.)
• GoodSearch and GoodShop - GoodSearch enables you to raise funds through the simple act of searching the Internet. Start your online shopping at GoodShop or download the toolbar and a percentage of what you spend will be donated to FightSMA at no extra cost to you!

To learn more about spinal muscular atrophy, the promise for SMA gene therapy, and the “Realizing the Dream” campaign, visit www.FightSMA.org.

Thank you to everyone who came out to bowl and to support Desiree’s Buddies.

CSHL researchers demonstrate efficacy of antisense therapy for spinal muscular atrophy

Chemically modified RNA segments called ASOs delivered into spinal cords of adult and neonatal mice provide a long term rescue from disease symptoms

Cold Spring Harbor, N.Y. - The devastating, currently incurable motor-neuron disease spinal muscular atrophy (SMA) might soon be treated with tiny, chemically modified pieces of RNA called antisense oligonucleotides (ASOs).

Scientists at Cold Spring Harbor Laboratory (CSHL) and California-based Isis Pharmaceuticals have succeeded in reversing symptoms of Type III SMA, a relatively mild form of the disease, in mice by introducing an ASO into their spinal cords. The ASO fixes the molecular mistake underlying SMA by redirecting a cellular editing process called alternative splicing.

“Validating ASO efficacy in animal models is a crucial pre-clinical step before this strategy can be applied in SMA patients,” says CSHL Professor Adrian Krainer, Ph.D. “We have now successfully demonstrated this therapeutic efficacy in the mouse nervous system. Although the mice only have the mild symptoms of Type III SMA, our treatment can effectively correct them.”

Based in part on the team’s findings, which appear online ahead of print on July 12th in Genes and Development, Isis selected an antisense drug candidate to move forward in development to treat SMA.

“SMA is the leading genetic cause of infant mortality and has limited treatment options for patients. With Dr. Krainer’s lab at Cold Spring Harbor Laboratory, we have made significant progress in identifying a drug development candidate and conducting early preclinical studies to access its therapeutic potential,” said Frank Bennett, Ph.D., Senior Vice President of Research at Isis Pharmaceuticals. “We are committed to advancing this program toward the clinic.”

To read the full press release, click here.

To read the abstract of the study, click here.

Dr. Adrian Krainer is a friend of FightSMA and a regular speaker at FightSMA’s Annual Conference. At the 2010 FightSMA Annual Conference, his presentation was entitled “Antisense Correction of SMN2 Splicing in the CNS for SMA Therapy.”

RICHMOND, VA - Richmond-based FightSMA announced today a new fundraising campaign for spinal muscular atrophy (SMA) gene therapy, “Realizing the Dream.” FightSMA is collaborating with the Santa Barbara–based Gwendolyn Strong Foundation, to form a bi-coastal partnership with a common goal: to bring SMA gene therapy to clinical trial.

“Ten years ago, it would have been unheard of to say scientists were approaching a treatment or cure for spinal muscular atrophy,” said FightSMA President Martha Slay. “Today, the dream is being realized in some of the most prestigious labs across the country. Never before has there been such promise for SMA gene therapy.”

Beginning now and for the next three years, families and groups in the SMA community will raise funds to build a safe foundation, deliver genes to an SMA model, and produce adequate vector (gene delivery) supply. These efforts will support Dr. Brian Kaspar (pictured left) of Nationwide Children’s Hospital and The Ohio State University and other collaborating scientists.

FightSMA, working with the Gwendolyn Strong Foundation, a funding source for critical SMA science and awareness initiatives, invites the SMA community to make a decade-old dream come true. “Our SMA gene therapy program at Nationwide Children’s Hospital and the Ohio State University continues to show great promise for treating SMA patients,” said Dr. Kaspar.

FightSMA’s objective for the balance of 2010 is to complete funding for Phase One and for Year-One of Phase Two of the research program. “The first objective is to build a solid foundation of safety and to eliminate toxicity,” said Dr. Chris Lorson, FightSMA Science Director. Additionally, FightSMA plans to raise another $250,000 to fund the first year of Phase Two (Delivery & Efficacy). The “Realizing the Dream” program will be accomplished through a series of campaigns. Completing these two Phases will bring SMA gene therapy significantly closer to clinical trial.

FightSMA has been instrumental in helping to develop a gene therapy strategy to cure spinal muscular atrophy (SMA), including oligonucleotides and gene replacement vectors. The strides that SMA researchers have made in the gene therapy arena have provided insights into a range of genetic disorders, including other neurodegenerative disease (ALS/Lou Gehrig’s disease, myotonic dystrophy, Huntington disease) and other diseases such as Duchenne muscular dystrophy.

For more information on the FightSMA-Gwendolyn Strong Foundation partnership and “Realizing the Dream” campaign, visit www.fighsma.org or call 804-515-0080.

FightSMA was created to strategically accelerate the search for a treatment and cure for spinal muscular atrophy (SMA), the number-one inherited cause of infant death. The organization pursues this objective by raising awareness and funding for SMA research.

Eisenberg thanked the Virginia delegation for their continuous support over the years, especially Congressman Eric Cantor (R-7th) for serving as the lead cosponsor for the bill. Mr. Eisenberg also spoke to the Congressman’s important position in leadership, and his ability to help us move this legislation forward as swiftly and efficiently as possible.

The SMA Treatment Acceleration Act, led by Congressmen Patrick Kennedy (D-RI) and Eric Cantor (R-VA) in the House, and Senators Debbie Stabenow (D-MI) and Johnny Isakson (R-GA) in the Senate, currently boasts 106 bipartisan cosponsors in the House, and 20 bipartisan cosponsors in the Senate.

To read Mr. Eisenberg’s editorial, please click HERE.

For more information on the SMA Treatment Acceleration Act and how to contact your Members of Congress, please contact Caroline Gibson, Public Affairs Coordinator (804-515-0080 or carolinegibson@fightsma.com).

The abstract:

Spinal muscular atrophy (SMA) is an autosomal recessive neurodegenerative disorder and a leading genetic cause of infantile mortality. SMA is caused by mutation or deletion of Survival Motor Neuron-1 (SMN1). The clinical features of the disease are caused by specific degeneration of α-motor neurons in the spinal cord, leading to muscle weakness, atrophy and, in the majority of cases, premature death. A highly homologous copy gene (SMN2) is retained in almost all SMA patients but fails to generate adequate levels of SMN protein due to its defective splicing pattern. The severity of the SMA phenotype is inversely correlated with SMN2 copy number and the level of full-length SMN protein produced by SMN2 (~10–15% compared with SMN1). The natural history of SMA has been altered over the past several decades, primarily through supportive care measures, but an effective treatment does not presently exist. However, the common genetic etiology and recent progress in pre-clinical models suggest that SMA is well-suited for the development of therapeutic regimens. We summarize recent advances in translational research that hold promise for the progression towards clinical trials.

For more information, click here.

Every June, daughters, sons, mommies, sisters, brothers, and friends head to their local drug store to pick out the perfect card for someone they know that’s a terrific father. Some cards will make him laugh; others might make him cry (though he’d never show it). He’ll rest the card on the desk in his office, a smile crossing his face each time he recalls the kind, handwritten words written inside, punctuated with a “Happy Father’s Day.”

He’ll receive electronic gadgets, tools, ties, and socks. He might even get breakfast in bed. But the greatest gift of all that day is the reason why we celebrate him in the first place: his CHILD.

They say a parent’s love is the most powerful love in the world. You all know that. The love you feel for your children is deep and unconditional, ever growing AND ever present. You would go to the ends of the Earth for your child, and beyond if you could. And today, Dad, we honor you. We thank you.

The SMA community is overflowing with love for our precious children. The level of understanding between the parents runs deep. This is a special community, filled with special parents, and most importantly, special kids.

FightSMA invited a few special dads to share special Father’s Day story with each of you:

Mike Calise, Dad to Corinna
Cranston, RI
Corinna’s Angels (www.corinnasangels.org)

• What has being a Dad meant to you?
  Being a dad is a tremendous joy and responsibility. Your priorities change the second you have a child; you and your spouse share an overwhelming sense of love, gratitude and responsibility as a result of having a child together. Being a dad of a child with a disability is even more challenging but the rewards are so much greater. There is no greater feeling than sharing special times with my daughter, Corinna. I really appreciate every bit of fun that we have and every new experience we are able to share.
• What is your favorite thing to do with Corinna?
  I love to just hang out with Corinna and play the Wii or Nintendo or just watch her favorite movie or TV show. Corinna has an incredible spirit and great sense of humor that makes every minute with her enjoyable.
• Do you have a special message for the other dads this Father’s Day?
  Words of wisdom to other fathers: Appreciate and love your child and family like it could be your last day together. At the end of the day, there is no greater feeling of love than that which you share with your family.

Bill Strong, Dad to Gwendolyn
Santa Barbara, CA
Gwendolyn Strong Foundation (www.gwendolynstrongfoundation.org)

• What has being a Dad meant to you?
  Being Gwendolyn’s Dad means the world to me. Regardless of how short my time with her will be, I consider myself unbelievably fortunate to have been given the gift of time with my precious daughter. Over the past 2 1/2 years, I’ve learned more from Gwendolyn about myself and what is truly important in life than I had over the previous 31. Getting to meet Gwendolyn has changed my life, challenging myself to truly know her and always be present with her continues to fulfill me, and striving to provide her the quality of life she deserves and cherishing every second that I have left with her is and always will be my number one priority.
• What’s your favorite thing to do with Gwendolyn?
  My favorite things to do with Gwendolyn are anything and everything that sets off that soft, infectious giggle, inspires that sparkle in her eye, and strengthens that deep connection between the two of us. I love my “Daddy Saturday” walks together, finding new crazy adventures, reading her books, teaching her new things, our snuggle time, and being the last one she sees at night and the first one she sees when she wakes up. More than anything, I simply love spending every possible second — focused on the present — together with Gwendolyn.
• Do you have a special message for the other dads this Father’s Day?
  Happy Father’s Day to all of the dads who are fortunate enough to have an incredible daughter/son in their life like Gwendolyn.

On June 5th, they were at it again, holding another lemonade stand. This year they’re efforts were rewarded 500% as they raised $1,500 from supporters in their Virginia neighborhood and across the country who want to join the fight to end this disease.

Thank you to all the members of Tatum’s Team for your fantastic work!