News

We are excited to announce that we have launched the TBRS Community Patient Registry. The Registry is a series of surveys that ask about the quality of life, health, and developmental history of people diagnosed with TBRS. It is an invaluable tool to help us further our understanding of TBRS and advance research so we can move toward identifying treatments, improving medical care, and formulating educational supports. Our new goal is to have at least 100 registry participants by February 28, 2022. If you complete all of the surveys before February 28, 2022, you will receive an exclusive invitation to “Coffee with Kate.” This is a virtual meeting with Dr. Kate Tatton-Brown, to be held in March via Zoom. Participants can submit questions prior to the event, which Dr. Tatton-Brown will then cover in her talk.
Don’t miss out on this great opportunity to do two amazing things at once – support TBRS research and meet with the world’s foremost authority on TBRS, Dr. Tatton-Brown.
When you complete the TBRS Community Patient Registry, you will receive a $25 Amazon gift card as our thanks to you.

Dr. Kate Tatton-Brown and Dr. Suzanne Alsters are studying obesity and eating behaviors in individuals with Tatton Brown Rahman Syndrome and are seeking participants. Their project involves an anonymous online survey and is open to any individual who has been diagnosed with TBRS. Participants are also asked to share the genetic variant from their genetic report and height and weight measurements of the person with TBRS.

Obesity and overeating are common concerns of TBRS families, and The TBRS Community is delighted that Dr. Tatton-Brown and Dr. Alsters are working to understand these conditions. It is critical that they receive participation from as many families as possible to advance the prospects of addressing these symptoms in the future.

To receive a link to the questionnaire or if you have any questions, please email survey administrator Jess: [email protected] or you can access the link directly from The TBRS Community’s private Facebook group.

Applications for the Bridge to Independent Award Program through the Simons Foundation Autism Research Initiative (SFARI) are open. The grant provides $495,000 in funding over three years for researchers just beginning their professorships. The program is open to scientists in the US and Canada who already study autism or are seeking to launch research projects on autism. Learn more here.

The TBRS Community is excited to announce a call for proposals to study Tatton Brown Rahman Syndrome in a model system. We have partnered with the Rare Disease Models and Mechanisms Network (RDMM) to award $25,000 to a Canadian lab to investigate the mechanisms of TBRS or to identify potential therapeutic targets. The application deadline is February 28. Researchers can apply through the RDMM, which will select the recipient.

Each month a wonderful group of young adults and teens who are diagnosed with TBRS gather for our Social Group via Zoom. With the help of a volunteer facilitator we have a blast with activities that are usually requested by our group members. You may find us doing anything from dancing and joke telling to karaoke and rock painting. We have even had a few younger kids join us for some of these activities. The group is ever evolving and always a fun time. There is no pressure to chat if you are feeling shy, and you don’t have to participate in the activity if you would rather just talk. Zoom makes it possible to have participants from all around the globe. Please reach out to [email protected] if you are interested in joining us. If you or a loved one are diagnosed with TBRS and you haven’t joined our private Facebook Group, please do!

The TBRS Community offers a monthly Parent and Caregiver Support Group via Zoom, so families from all around the world can participate. We create a safe place to share thoughts, feelings, concerns, and emotions without judgment. The meeting seems to take a different shape every time we gather—sometimes we focus on sharing resources or experiences, but we always seek to make everyone feel comfortable and supported. Any parents or caregivers of someone diagnosed with TBRS are welcome. Please contact [email protected] if you are interested in learning more. If you or a loved one are diagnosed with TBRS and you haven’t joined our private Facebook Group, please join us!