Get Involved
Join us in supporting our mission
You can make a difference
Use the menu below to learn how you can make an impact on TBRS research, education, and support. We would not be where we are today without the involvement of TBRS Community patients and families.
Community Involvement
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.
Volunteer
By dedicating your time and sharing your expertise, you have the power to inspire hope, bring joy, and create a supportive network that transforms lives. Our mission is to support families affected by TBRS and advance research toward interventions. Together, we can create meaningful change. Sign up to volunteer today and be a part of this extraordinary journey.
Research Participation
Contribute to Important TBRS Research!
Our Patient Registry collects information from patients and families on all health information relating to TBRS. This registry is also a Natural History Study, which means we can collect information over time to assess what TBRS looks like as patients age. All of the information given to scientists and researchers is deidentified to protect the privacy of the patient and/or family.
Count Me In for TBRS is a private directory of the TBRS community. Participants join through an online survey for people with TBRS and their caregivers. The TBRS Community owns and operates this program with the goal of providing support for our members and accelerating research that will benefit individuals diagnosed with TBRS.
Our Biorepository offers a place to store patient and family samples (blood, saliva, urine, cerebrospinal fluid, skin biopsy, peripheral tissues, etc.) so they are readily available to interested researchers working on TBRS. Our hope is that this will facilitate research and reduce the burden of sample donation on our families.
Host a Fundraiser
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.
Please email [email protected] to get started!
Thank you to our recurring donors...
Generous supporters who commit to making monthly donations to sustain our mission.
to our Family Fundraisers...
Dedicated community members plan a variety of events, from cornhole tournaments to wine tastings, to raise funds for research and family support.
To plan a fundraiser or learn more, please email [email protected]!
Members of the Dorothy G. Hatton Legacy Society have included the TBRS Community in their estate plans, creating lasting gifts to help sustain our mission for future generations.
