Simons Searchlight is looking for individuals with variants in the DNMT3A gene, which causes Tatton Brown Rahman Syndrome, to participate in its study on the genetic causes of autism. The study involves an online survey and phone call with a genetic counselor.
Research opportunity from the Simons Foundation Read More »
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Fundraising Committee Member, Terra Badowski, organized a fun fundraiser for all to get excited about the 2020 Super Bowl (Chiefs vs 49ers). She came up with the idea to create Super Bowl Squares, created the boards and private FB pages to invite friends and family to purchase squares. Three committee members created boards and total raised funds equated to $2,100!!!!
2020 Super Bowl Square Fundraiser Read More »
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The TBRS Community gathered for the weekend of October 18th – 20th, 2019 at The Rocking Horse Ranch in Highland, NY. People traveled from throughout The United States, Canada, Italy, and The UK to attend. Doctors and researchers from three prestigious institutions, St George’s Hospitals, Baylor College of Medicine, and Washington University, joined us. The presenters included Dr. Kate Tatton Brown, Dr. Harrison Gabel, Dr. Ayala Tovy, Dr. Amanda Smith, and Dr. Rachel Rau. They presented on a variety of topics, including the genetics of TBRS, mouse model research outcomes, TBRS natural history study results, epigenetics, and molecular studies. We had engaging open panel discussions, question and answer sessions, and held our first support group – which was a great success. Believe it or not, there was still lots of time to have fun as a group and explore the ranch. Families participated in horseback riding, karaoke, magic shows, swimming, mountain tubing, scavenger hunts, dancing, and enjoyed the all you can eat buffet. The self-serve ice cream was a welcomed added bonus for the kids. We plan on holding a TBRS Community Conference every year, so sign up for our newsletter to stay informed.
2019 TBRS Community USA Conference Read More »
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April 28, 2019, LaGrange, NY
Autism Directory Service held an Autism Awareness Community Walk at Stringham Park. Jill Kiernan, founder of TBRS Community, set up a table at the walk to bring awareness to TBRS Community. Brochures, pamphlets and a raffle were made available to the public. Another local TBRS family, Colette and Luke Corry were able to attend as well. It’s always a fun day when multiple TBRS families get to be with one another.
LaGrange, NY Walks for Autism Awareness! Read More »
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The Glenns’ hosted a golf tournament on April 11, 2019 in Birmingham, Alabama benefiting Stryker Strong and TBRS Community. The TBRS Community is near and dear to the family as their son Stryker has Tatton Brown Rahman Syndrome. The family organized and successfully raised $6,300 for The TBRS Community with funds raised from 31 teams of golfers participating in the tourney and raffle and silent auction items.
Stryker Strong 2019 Golf Tournament Read More »
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Colton’s XXXtraordinarY Cause was created in honor of Colton Robert. When Colton was just 9 months old he was referred to a geneticist because he was failing to thrive and was behind developmentally. His parents found out that he a rare syndrome called 48XXXY. Boys who have 48XXXY have physical struggles due to low muscle tone, complications with language and speech, developmental and behavior problems, and varied health issues. Colton has been fortunate to have gotten an early diagnosis that has resulted in early hormone treatments and therapies that are believed to have a positive impact on his future. His parents’ goal is to spread awareness, not only for 48XXXY, but for all X & Y variations (as they occur in 1 in every 500 births), so that these children can get an early diagnosis and a better chance to reach their full potential. Read more about Colton’s XXXtraordinarY Cause here.
Each year Colton’s XXXtraordinarY Cause selects an honoree and splits the proceeds from their annual event ‘A Rare Affair’! At their 2nd annual ‘A Rare Affair’ in 2018, TBRS Community’s very own Aevary Kiernan was chosen as the honoree with TBRS Community receiving the funds. The event made more than $65,000, donating $32,500 to Tatton Brown Rahman Syndrome Community! The event date was perfect timing, as it was the same weekend as TBRS Community’s first annual USA conference. A few of the families were able to attend along with the Kiernan family. What a wonderful evening.
Colton’s XXXtraordinarY Cause – TBRS Community as Honoree at ‘A Rare Affair’ Read More »
