Get Involved

Get Involved

Join us in supporting our mission

TBRS Community


Upon receiving a diagnosis, a good start is to join the Private Facebook page to connect with other families. We understand the journey can be overwhelming and isolating, but connecting with others will help make the process a little easier. There are several opportunities for diagnosed individuals to participate in research that will hopefully one day aid in developing treatments for TBRS. Another wonderful way to connect and give back is by joining one of the four TBRS Community Committees: Education and Outreach, Event Planning, Fundraising, and TBRS Cares. All of them are 100% volunteer-run with no paid employees, and the organization is a 501(c)(3) nonprofit.

Facebook

Request to join The TBRS Community's private Facebook group. Here, you can connect with other families to learn more about TBRS and gain amazing support. This private group is for diagnosed individuals, their families, doctors, researchers, educational professionals, and those seeking a diagnosis.

Research

There are several important studies you can participate in to help increase understanding of this rare genetic disease. If you are interested in contributing to TBRS research, please click "Learn More" for details.

Stay tuned for more information on The TBRS Community Rare Disease Registry!

Committees

TBRS Community Committees
The TBRS Community Committees were founded in October 2018 to aid in the effort to grow and develop our community, provide assistance to those diagnosed, and advance research to hopefully one day provide a cure for this rare syndrome. The Committees are dedicated to developing a global medical registry, conducting the annual TBRS conference, funding grants to further research, planning events to bring awareness to this syndrome, and providing care packages for individuals recovering from serious illness. We also sponsor programs to support inclusion for people with other disabilities. The TBRS Community has four committees to assist in these efforts.

Education and Outreach:

Committee Objective: To create literature and resources for families, educators, and doctors about Tatton Brown Rahman Syndrome that will bring awareness and knowledge of the rare syndrome. Expand the syndrome’s presence within the medical community. To provide knowledge and insight on current research to families. Ensure The TBRS Community is actively engaging and learning how to improve the lives of those with TBRS.

Goals: To finalize the global registry and begin to collect patient information. Update and improve website content. Continue membership with NORD (National Organization for Rare Disorders). Generate documentation/pamphlets/flyers to provide to those in need of information. Provide access for families to join research opportunities. Create “fireside” chats and educational webinars on topics to aid caregivers. Raise the profile of The TBRS Community so doctors and researchers come to the community for research opportunities. Pursue publications in the medical literature and news coverage of TBRS. Increase communication and cooperation with researchers interested in DNMT3A/TBRS.

Chair: Mike Isaacs; education@tbrsyndrome.org

Event Planning:

Committee Objective: To collectively plan events throughout the year to create awareness of Tatton Brown Rahman Syndrome. Effectively plan the annual TBRS Community conference and create TBRS Community Day events.

Goals: Establish events throughout the world to raise awareness and funds. Review locations for the 2021 annual conference. Launch an annual TBRS Community Day. Create a manual of TBRS Events as guidance for others (for example, sponsoring events that promote inclusion of people with disabilities, fundraising events, and events that increase awareness of TBRS) around the world.

Chair: Jill Kiernan; events@tbrsyndrome.org

Fundraising:

Committee Objective: Raise funds to support The TBRS Community’s objectives and goals, establish corporate sponsorships, aid families with knowledge and assistance to organize/run fundraisers, and advertise fundraisers on the The TBRS Community website and Facebook page.

Goals: Raise money for the annual TBRS Community conference by fundraising and establishing new and current sponsors. Fundraiser for the Adam Parsons Memorial Scholarship. Raise additional funds to support the monetary needs of The TBRS Community. Develop guides to fundraising as part of the Event Planning Manual. Write grants to assist in funding The TBRS Community. Research fundraising tools/software/graphics/etc. Establish annual giving push.

Chair: Kacee Richter; fundraising@tbrsyndrome.org

TBRS Cares:

Committee Objective: Provide support to caregivers of those diagnosed with Tatton Brown Rahman Syndrome.

Goals: To ensure all caregivers feel supported and know they have companionship from the TBRS Cares Committee. Establish the Katherine McMahon Memorial Award. Sustain and grow the PenPal program (pair a person with TBRS to a non-TBRS person to establish a genuine relationship).

Chair: Jenny Beeson; cares@tbrsyndrome.org

Volunteer

Would you like to plan a fundraiser or event? Do you have other ideas about how to contribute to The TBRS Community? There are some easy actions, like choosing The TBRS Community as your charity of choice on Amazon Smile. Some employers will match donations to their employee's chosen charities. You can also start a Facebook Fundraiser. Please reach out. We would love to work with you and we welcome your ideas.

We'd Like to Thank Our Supporters

These businesses, individuals, and families have gone above and beyond for The TBRS Community, by sponsoring our events and donating to support our mission. Thank you! If your business is interested in becoming a sponsor, click "Be a Supporter."