February 28, 2024

Celebrate Rare Disease Day by joining the TBRS Exercise Challenge as a participant

We need you! Celebrate Rare Disease Day by joining the TBRS Exercise Challenge as a participant

In April 2024, the TBRS Community is raising $25,000 to accelerate the TBRS patient registry and drive treatments and a cure for TBRS. 

The TBRS Challenge is a “Move-A-Thon” that raises money for TBRS while promoting a healthy lifestyle. Show your support – become a participant! Create your own team and promise to exercise for the month of April. Ask your friends and family to pledge their support by donating. Participants can choose what type of exercise they will do. 

Your participation will help us expand the TBRS Patient Registry and get valuable patient data into the hands of our scientists and clinicians. By doing so, clinicians around the world will finally understand the symptoms associated with TBRS, create appropriate surveillance and treatment guidelines, and move the needle forward on developing treatment options for people affected by TBRS. We will also be able to identify more patients with TBRS, and provide proper support and care.

To start your own fundraising challenge page, visit the TBRS Exercise Challenge page. Scroll down a little and you will click on either “Fundraise” or “Join a Team” buttons. In just a few short steps you’ll be able to set up your personal fundraising page.

We aim to put the fun in fundraising! We will host a few friendly challenges throughout the month of April to rally our fundraising community. Be sure to pay attention to your emails throughout the month! 

This fundraiser was thought up by our very own, Ashley Hatton! Thanks Ashley. You’re a true inspiration! Have questions? Need help setting up your page? We are here to help. Email [email protected] 

Celebrate Rare Disease Day by joining the TBRS Exercise Challenge as a participant Read More »

Count Me In for TBRS – Call for Action!

One of the most common questions we hear from patients, families, doctors, and researchers is, “How many people in the world have TBRS?” Count Me In for TBRS aims to provide an answer!

Count Me in for TBRS is our Contact Registry, which collects contact and demographic information from diagnosed individuals and families. 

By gathering information from families, we can more accurately estimate how many people worldwide have TBRS. We can also provide researchers with more specific data, such as how many people have TBRS in a certain country, or what races or ethnicities are represented in our community. The contact information also allows the TBRS Community to contact families in the event of clinical trials if they so choose. 

No personally identifiable information will be shared with outside parties (clinicians, researchers, pharma, etc.) without the family’s permission. Count Me In for TBRS also allows families to choose how they would like their information used. For instance, if a family does not want to share their location, they are not required to. Additionally, if a family does not wish to be contacted they can choose this option.

Participate in Count Me In for TBRS to help us understand how many families are affected worldwide. Participation only takes a few minutes, and it helps us support families and further research on TBRS! Click here to participate!

Count Me In for TBRS – Call for Action! Read More »

Random Kindness for TBRS – Rare Disease Day 2024 and the 10th Anniversary of TBRS

The TBRS Community is spearheading an inspiring initiative to raise awareness and support for Tatton Brown Rahman Syndrome (TBRS) through the Random Acts of Kindness Campaign for Rare Disease Day 2024, and to mark the 10th Anniversary of when TBRS was first identified.

Centered around the spirit of compassion, the campaign invites individuals to carry out random acts of kindness, from buying a stranger a coffee to volunteering in the community. After these gestures, participants are encouraged to distribute a TBRS Random Acts of Kindness Flyer, which not only educates the recipient about TBRS but also encourages them to pay the random act of kindness forward.

“The essence of this campaign is to foster a community of care and support, touching lives in meaningful ways,” explains Jill Kiernan, TBRS Community’s Executive Director. “We believe that through simple acts of kindness, we can bring about significant support for those affected by TBRS and inspire a chain reaction of goodwill.”

This campaign not only highlights the critical need for community backing for rare diseases but also the power of collective goodwill in creating a more empathetic world. As tales of kindness unfold, the campaign offers a path for everyone to make an impact.

To join the Random Acts of Kindness Campaign print the flyer below, make a random act of kindness, and share the flyer with the recipient of your act. Spread the love!

Random Kindness for TBRS – Rare Disease Day 2024 and the 10th Anniversary of TBRS Read More »

New Family Meet-Ups — Upcoming Dates!

The TBRS Community hosts quarterly virtual meet-ups for newly diagnosed and existing members of the community. This is an informal gathering to answer questions, talk about current TBRS-related research, review what the TBRS Community has to offer, and simply get to know each other. We have several New Family Meet-Ups scheduled for 2024!

For more information on New Family Meet-Ups and other events, subscribe to our calender here.

New Family Meet-Ups — Upcoming Dates! Read More »

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