Conference Scholarship Information and application

The 16th annual 1p36 Deletion Support & Awareness conference will be held in Westminster (Denver), Colorado. Conference dates will be Thursday, August 1^st through Saturday, August 3^rd, 2024.  The conference hotel is in Westminster, a suburb of Denver, only 30 miles from Denver International Airport and 95 miles from the Colorado Springs Airport. The Westin, Westminster is a gorgeous venue with beautiful guest rooms and meeting spaces, a full workout/fitness studio, an indoor heated pool and of course, incredible views of the majestic Colorado Rocky Mountains. The hotel is also very conveniently located within a short walk of many dining and retail establishments.

2024 conference hosts, the West Family, in collaboration with the Board, is working hard to organize and facilitate an incredibly memorable, life-giving weekend!  There will be activities for everyone, including a Mom’s Night Out, Dad’s Night Out, and even a special Sibling Event. A speaker line-up of medical professionals, genetics experts and other pertinent service providers will offer valuable information, research and clinical studies, as well as resources and ideas, all relevant to 1p36 Deletion Syndrome. Families and caregivers will be educated, empowered and inspired, enabling them to be stronger advocates for their loved ones. Every 1p36 conference is an amazing opportunity to be surrounded by people that truly understand what loving and caring for someone with 1p36 deletion syndrome is really like. Life-long friendships are forged and cultivated with people, spanning across diverse cultures, backgrounds and beliefs, all brought together and bonded by some missing DNA on the 1^st chromosome.

An exclusive group rate of $149/night for standard rooms (1 King or 2 Double Beds) has been negotiated at the Westin, Westminster (taxes and fees not included). The venue offers complimentary basic, high-speed, wireless internet in guestrooms and meeting space as well as complimentary self-parking for all attendees. The group rate is available for up to 3 days before and 3 days after the conference. Book your reservation for the hotel now by clicking here.  If you would like to extend your stay, you may call the hotel directly to check availability at (303) 410-5000 and ask for the 1p36 Deletion Support and Awareness room rate.

For those who would like to venture out a bit and enjoy more of what Colorado has to offer:

-90 minutes to Rocky Mountain National Park and Estes Park
-30 minutes to the Denver Museum of Nature and Science and the Denver Zoo
-15 minutes to Downtown Denver and Empower Field at Mile High
-15 minutes to Downtown Boulder and CU Boulder
-90 minutes to The United States Air Force Academy, Garden of the Gods, Cheyenne Mountain Zoo, Pikes Peak and the cog railway, and the United State Olympic and Paralympic Museum 

For more information about Colorado sites and attractions, visit www.colorado.com.

For more information about Denver’s sites and attractions, visit www.denver.org

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The 15th annual 1p36 Deletion Support & Awareness conference will be held in Detroit, MI, also known as “Motor City”, home of the automobile industry, beautiful Great Lakes shorelines, and Motown. The conference will run Thursday, August 3rd through Saturday, August 5th, 2023.  The conference hotel is in Novi, MI, a northern suburb of Metro Detroit and just a 30-min drive to Downtown Detroit, Home of the Detroit Tigers, Lions, Pistons, and Red Wings. Detroit Metropolitan Wayne County Airport is only 25 minutes away from the hotel.

The 1p36 Conference hosts and Board are working hard to organize an amazing weekend with activities for the entire family as well as activities for Siblings, Moms and Dads. A team of medical professionals, genetic experts and other specialists will share information, research, and clinical studies relevant to 1P36 Deletion Syndrome, to educate our families and caregivers, and enable them to be stronger advocates for their loved ones. The annual 1P36 conference is also all about cultivating lifelong friendships with people and family from a multitude of diverse backgrounds and geographies, yet share one thing, a crucial chromosome thing, in common that brings us all together.

A special group rate of $129/night for standard rooms (1 King or 2 queen beds) has been negotiated at The Sheraton Detroit Novi with free Wi-Fi and parking. (taxes and fees not included).  Book your group rate for 1p36 Deletion Support and Awareness Conference. The group rate is available for up to 3 days before and after the conference.  If you would like to extend your stay, you may call the hotel directly to check availability at 248-349-4000 and ask for the 1p36 Deletion Support and Awareness room rate. Hotel reservations are currently available and must be made by Wednesday, July 12, 2023 to get the conference rate.

The Sheraton Detroit Novi is ideally located in a suburb of Metro Detroit, just a short distance away from many restaurants, golfing, shopping centers, pharmacies, and hospitals. For those that want to venture further into Metro Detroit locations, there are many local breweries within a short driving distance. The Sheraton Detroit Novi also offers a pool, fitness center, and the Novi Craft House restaurant and Bar. Check out VisitDetroit  to see what all the Motor City has to offer while you are visiting.

Update: Registration Deadline is June 30th. https://1p36conference2022.eventbrite.com

The 2022 1p36 DSA Conference is coming up July 28-30th at the Charlotte Westin in Charlotte, NC. All Conference information can be found on the conference information page. 1p36 Deletion Support & Awareness is also happy to be able to offer 6 conference scholarships for first time attendees. The scholarship application can be found here. Applications must be received by March 20, 2022.

Registration is Open Buy Tickets Now!

Patient registries are designed to collect, store, and curate data on patients to be used for a specified purpose. They can be tools to establish natural history studies, establish prevalence, and connect patients with researchers who study their disease. The CoRDS registry for 1p36 Deletion Syndrome will house basic contact and clinical information for any individual enrolled.  Please note that once you fill out the registry, no information will be shared with anyone without the permission of the 1p36 DSA.

 To have your child be part of the registry, please use this link:   https://cordsconnect.sanfordresearch.org/BayaPES/sf/screeningForm?id=SFSFL.  Note that our Angel Families are also welcome to participate in the registry!!  This link takes you to the Screening Form.  Indicate if you want to fill out information online or by mail. Be sure to select that you found out about the registry through 1p36 Deletion Support & Awareness.  

• If you choose to submit info online, you will receive an email with instructions on how to do this, including a username and temporary password.
• If you choose to submit information by mail, you will be mailed an information packet (including a pre-paid return envelope) with the materials you will need to enroll your child.

The CoRDS registry process is designed to be simple and user-friendly.  If you have any questions about this process, please contact cords@sanfordhealth.org or call them at 1-877-658-9192.

Once you have enrolled, you will be contacted annually by CoRDS personnel to update your information.

CoRDS takes your privacy and security very seriously.  You can find more information about their security measures on the CoRDS website.

1p36 Deletion Support & Awareness is very happy to be able to offer 6 scholarships to the 2018 Conference. Each scholarship includes 3 nights hotel at the Lord Baltimore Hotel and free conference registration for 2 adults and the individual with 1p36 Deletion syndrome. Complete scholarship information and application instructions are available at https://www.1p36dsa.org/2018-conference-scholarship The applications are due by April 22nd.

The 2017 Conference in Baltimore, Maryland was the first time in thirteen months I had left my son. As excited as I was, I was more nervous. I'm not a very outgoing person so it's difficult to just walk up and strike up a conversation. Even so I made a few more friends than I expected. I Probably could have made even more, but there's always next year!

My experience was emotional, scary, and eye opening. The first hour I think I cried six times. From sadness and happiness. Sadness because of the babies and children we lost. Happiness because of the overwhelming feeling of being with people who actually get it. They know how you feel. They have been there or are currently there. They understand the pain, stress, sleepless nights, the constant worry etc. It made me feel relieved. We all have family and friends who sympathize or say they understand. But we all know that's not always the case. You only understand if your living it.

I learned many things for when my son is older to help with behavior and communication. How to engage him in different activities. How to help and support him when his dad and I aren't around.

The Q&A session with the genetics doctors was interesting to me. I learned quite a few things. Somethings I knew already. But it's reassuring hearing that it's not your fault. It's just something that happens. I know I have blamed myself. I didn't do something right. I know now for sure that's not the case.

Seeing all the kids with 1p36 Deletion Syndrome was great and hard at the same time. It really is such a wide spectrum. I often wonder where my son will fall. But it gave me confidence that he isn't as severe as I thought and there is so much potential and hope for him. Therapy, therapy, therapy!!!

When I arrived home I was slightly sad. Not that my feelings had changed for my son. But I see him in a different light now. I see the diagnosis more now than I did before. That hurts a little, but it helps me to have more patience and understanding with him.

The conference was an amazing experience and I look forward to being in Houston in 2018. I encourage all 1p36 parents, grandparents all family and friends to attend a conference if they are able. It is amazing the information and new friends you can make. It's a big family. A support system that all of us need. This is a long road and a rough ride. But together we can help our kids overcome and be the best they can be. They are blessings and should be treated as such.

Last year 1p36 DSA was able to raise over $1500 on a raffle for a beautiful handmade 1p36 quilt made by Dianna Storck. Once again at our 11th Annual 1p36 Conference we will be raffling another beautiful handmade quilt featuring Captain Chromosome! It was also made by Dianna Storck, who is the aunt of Wendy Winiecki who has 1p36 Deletion Syndrome. This quilt has Captain Chromosome appliqued in the center, surrounded by the 1p36 logo colors. The quilt pattern is called "Deletable Mountains". It measures 64" x 64". The backing is a soft fleecy fabric called milky in royal blue (which is Wendy approved). We will be selling raffle tickets online through July 30th, 2017 and we will be selling them at the conference through August 5th. To buy raffle tickets for the quilt just go to the 1p36 DSA merchandise store. Raffle tickets are $5 for 1 or 5 for $20. Get yours now and know that even if you don't win you are helping a great cause.

The raffle winner will be drawn Saturday August 5 at the 2017 1p36 DSA conference in Baltimore, MD. You do not need to be present to win. If the winner is not at the conference they will be notified shortly after via phone call and/or email and the quilt will be shipped to you at no charge after arrangements are made.

• This is a fundraiser with all proceeds to benefit 1p36 Deletion Support & Awareness
• you will not receive a raffle ticket in the mail. Keep your receipt as proof of purchase
• This is for a drawing for a chance to win the 1p36 quilt
• please like and share with your friends and on Facebook
  

Your conference registration includes a ticket to the 7:05pm Friday August 4 game vs. the Detroit Tigers.  The stadium is only several blocks from the Lord Baltimore Hotel.  Register now!

Please note the following about Oriole Park:

--all items coming into the stadium will be inspected.

--no bags bigger than 16”x16”x8” are allowed.  Purses, diaper bags, and backpacks are allowed but must fit into a 16”x16”x8” box.

--no alcoholic beverages, glass containers, or coolers are allowed in the park.  You CAN bring in non-alcoholic beverages in plastic bottles.

--you will need to pass through a metal detector to get into the park.  You will need to remove your keys and cell phone from your pockets.

--children 2 and under do not need a ticket but will be expected to sit on your lap.

--Stollers must fold up and go under your seat in order to be kept in a seating area.  Large strollers can be checked at Stroller Parking inside of Gate G on the lower concourse.

--Family restrooms are located next to the First Aid rooms behind home plate on both the Upper and Lower Levels.

For the baseball fan: 

--Players and coaches may sign autographs from the time the gates open until 45 minutes before the start of the game.

--visit a Fan Assistance Center for a free certificate commemorating your first trip to Camden Yards.

Interested in being social but maybe not watching the game?  Oriole Park has a number of gathering areas.  These will be noted in your conference materials:

--Eutaw Street pedestrian mall
--the Flag Court
--the bullpen picnic area
--the Roof Deck
--Kids Corner at Gate A
--Kids Corner Play Area at Gate C
--Orioles Legends Park beyond the bullpens in center field

Find more information at Baltimore.orioles.mlb.com/bal/ballpark/information.  And don’t forget to register for the conference!