Archived Newsletters

NEW: April 2025

Community Newsletter | April 2025

TBRS Exercise Challenge: Move for a Cause!

Get ready to move! The TBRS Exercise Challenge is back, and this year, we’re rallying our community to make an even bigger impact. This annual fundraiser, inspired by Ashley Hatton, a person with TBRS, encourages participants to set personal fitness goals while raising funds to support the TBRS Community.

Why are we doing this?

Funds raised will go toward strengthening our community, advancing research, and improving clinical care. This year, we’re focusing on creating a clinical series and formalizing surveillance and treatment guidelines for TBRS—critical steps in ensuring better health outcomes for our families.

How can you help?

Donate to support one of our amazing participants
Become a participant, set your fitness goal, share your progress, and gather donations! Whether you run, walk, bike, or dance, every move counts.

SAVE THE DATE: 2026 TBRS Summit at Morgan’s Wonderland Camp!

Mark your calendars! The 2026 TBRS Summit is happening the weekend of March 21st, 2026, at the incredible Morgan’s Wonderland Camp in San Antonio, Texas!

The TBRS Summit is where the magic happens—families, researchers, and clinicians come together to connect, learn, and push forward the future of TBRS care and research. From expert-led sessions to hands-on activities, this is a weekend filled with knowledge, support, and lifelong friendships.

Stay tuned for more details, including registration and agenda updates. We can’t wait to see you there!

Save the date: Weekend of March 21, 2026
Morgan’s Wonderland Camp | San Antonio, TX

More info coming soon!

New Resource: TBRS Cardiac Care & Surveillance Fact Sheet

We’re excited to share a new Cardiac Care & Surveillance Fact Sheet for individuals with Tatton Brown Rahman Syndrome (TBRS). Research shows that over 50% of individuals in the TBRS Patient Registry have a diagnosed heart condition or structural abnormality, with aortic root dilation emerging as a significant concern. This resource helps families and clinicians understand common cardiac risks associated with TBRS and highlights the importance of routine echocardiograms for early detection and management.

Learn more and access the fact sheet today!

Click here to learn more!

The TBRS Community Impact Report is Here!

We’re excited to share our first-ever Impact Report, showcasing the incredible progress we’ve made together. From groundbreaking research to global advocacy, this report highlights the power of patient-driven efforts and the milestones we’ve achieved—including launching several tools like our Registry and Biorepository, funding research, and building strong collaborations.

Dive into the full report to see how your support has fueled real change—and where we’re headed next!

Download the Impact Report!

New and Improved Patient Registry!

The Tatton Brown Rahman Syndrome and DNMT3A Patient Registry is more than just a data collection system. It’s an interactive participant-driven resource that can empower those affected by Tatton Brown Rahman Syndrome, Heyn Sproul Jackson Syndrome, or DNMT3A-related disorders.

Eligible participants include anyone around the world who has been diagnosed with Tatton Brown Rahman Syndrome, Heyn Sproul Jackson Syndrome, or has a DNMT3A variant but no diagnosis.

We hope the data collected leads to the development of new diagnostic and treatment options.

Read the full story!

Welcome to the new TBRS Community Treasurer!

We are pleased to announce that Tim Bernier will be joining the TBRS Community Board of Directors as our Treasurer!

Here is a short introduction from Tim:

"I am the proud father of two wonderful daughters, including our youngest, Reese, who was diagnosed with TBRS in 2023. After a long and challenging journey through numerous tests and evaluations, discovering the TBRS Community was a turning point for our family. Attending the 2023 TBRS Summit provided us with invaluable connections and a support network that continues to uplift and guide us every day. Professionally, I bring over 20 years of experience in the finance industry. I am a CFA® charterholder and hold a B.S. in Finance from Georgetown University."

Thank you, Tim, for joining our team!

Leave a lasting legacy with the Dorothy G. Hatton Legacy Society

Join the Dorothy G. Hatton Legacy Society, named in honor of a cherished TBRS grandma who was the first person to ever include the TBRS Community in her planned giving.

Legacy gifts play a crucial role in ensuring the long-term sustainability of the TBRS Community. These gifts allow us to:

Provide essential resources,
Support families affected by TBRS,
Advance critical research toward treatment development,
Expand our programs,
Increase our outreach, and
Offer hope to those living with TBRS.

There are financial and tax advantages for donors as well, including:

Estate Tax Reduction
Income Tax Benefits
Flexibility and Control
Enduring Legacy

Click here for more information!

Upcoming Events:

TBRS Friends and Family Support Group: Newly diagnosed families are encouraged to join our Executive Director and TBRS Parent, Jill Kiernan. Learn the newest TBRS-related information, hear about upcoming events, and find out more about programs the TBRS Community has to offer.
Saturday, April 26, 2:00-3:00PM EST. View the TBRS Community Calendar

Looking Ahead - Events in 2025!

Big Rhyds' TBRS Fundraiser in Wales – An International Effort for TBRS

We are so excited to share a special fundraising event hosted by the family of Rhydian, a member of the TBRS Community. A Michael Bublé tribute night featuring Tom Davies, who is widely regarded as the best tribute act in Wales, will raise vital funds for the TBRS Community. All proceeds are going to support research and programs for TBRS. Family-led fundraisers like these make a huge impact on the TBRS Community, and we couldn’t do this important work without family involvement like this. We thank the Williams Family for their support!

Do you have an idea for a family fundraiser? We can help. Contact [email protected]

Read the full story!

Rainbow Warriors Bowling Tournament: Inspired by Family, Driven by Heart

We are thrilled to celebrate Evan, who has been a longtime supporter of the TBRS Community and inspired to make a difference by his cousin, Olivia. This year, Evan is taking his dedication to a whole new level by launching his very own fundraiser: the Rainbow Warriors Bowling Tournament for TBRS. This event is more than just fun—it’s a powerful show of love and commitment to helping our community grow stronger.

Family-led fundraisers like Evan’s are at the core of what keeps us moving forward. We simply couldn't do what we do without them. Evan’s efforts have made such a difference, and we hope his example inspires more of our extended TBRS family to get creative and plan an event!

Check out Evan’s fundraiser and learn how you can support or start your own:
https://givebutter.com/RainbowWarriorsforTBRS

Read the full story!

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December 2024

Community Newsletter | December 2024

Hope for the Holidays: Help Us Launch the TBRS Drug Discovery and Repurposing Project

We're calling on the Community to help fund groundbreaking research to identify treatments and bring hope to families who need it most.

Here's What You Need to Know:

The Challenge: Families with TBRS have no options to improve symptoms or quality of life.
The Solution: A drug discovery and repurposing project to identify existing FDA-approved drugs or new treatments that could help TBRS patients.
The Goal: Raise $30,000 by December 31 to launch this critical project.

Progress Update:

We’ve raised $16,420, over halfway to our goal!
Your support can help us reach the finish line.

Why This Matters:

This project will bring hope and better health to children and families living with TBRS.
Every dollar supports life-changing research and brings us closer to real solutions.

How You Can Help:

Donate Today: Every contribution makes a difference.
Spread the Word: Share this campaign with friends, family, and your community.

Together, we can give families hope and a brighter future. Let’s make this happen—donate today!

Click to show your support!

This giving season, show your support as a TBRS GEM!

Become a TBRS GEM (Giver Every Month) this season!

By becoming a recurring donor, you have the chance to make a significant impact in the lives of those who face TBRS by funding crucial research, providing vital resources, and ultimately, improving their quality

Over the course of a year:

$10 per month allows us to host our TBRS Social and Support Groups
$25 per month funds the collection of one patient sample to our biorepository
$50 per month can send a TBRS Cares Package to 12 families in crisis per year
$100 per month provides the resources to maintain our virtual programming
$250 per month pays for our TBRS Patient Registry platform for a year
$500 per month can create an iPSC line, a valuable research tool based on patient cells

As a TBRS GEM, you will be featured on our website and social media, have access to TBRS GEM exclusive member update meetings, and receive a 10% discount to any of our paid events!

Click here to become a GEM!

Leave a lasting legacy with the Dorothy G. Hatton Legacy Society

Join the Dorothy G. Hatton Legacy Society, named in honor of a cherished TBRS grandma who was the first person to ever include the TBRS Community in her planned giving.

Legacy gifts play a crucial role in ensuring the long-term sustainability of the TBRS Community. These gifts allow us to:

Provide essential resources,
Support families affected by TBRS,
Advance critical research toward treatment development,
Expand our programs,
Increase our outreach, and
Offer hope to those living with TBRS.

There are financial and tax advantages for donors as well, including:

Estate Tax Reduction
Income Tax Benefits
Flexibility and Control
Enduring Legacy

Click here for more information!

Upcoming Events:

TBRS Friends and Family Support Group: Newly diagnosed families are encouraged to join our Executive Director and TBRS Parent, Jill Kiernan. Learn the newest TBRS-related information, hear about upcoming events, and find out more about programs the TBRS Community has to offer.
Sunday, December 15, 2:00-3:00PM EST. View the TBRS Community Calendar

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March 2024 (TBRS 10th Anniversary)

Special Edition:

It's the 10th Anniversary of TBRS!

We're celebrating the 10th Anniversary of the discovery of TBRS tomorrow, March 9th!

In honor of this important day we would like to share

some new resources, news, and events!

TBRS Baseball Card - a shareable resource for families!

We can help you make a baseball card that features your loved one with TBRS, to share with clinicians, teachers, caregivers, etc.

This personalized card includes your loved one's picture, birthdate, and a list of symptoms they experience. The card is also a celebration of strengths and interests, showcasing the vibrant personalities that define our TBRS family. The card is a powerful tool for increasing awareness and educating others about TBRS. Keep your card in your bag or wallet to easily share!

To create your personalized TBRS Community Baseball Card, please complete this survey and our Research Coordinator, Kit Church, will be in touch soon!

New Family Welcome Packet - A resource to get acquainted with our initiatives and research opportunities!

We are thrilled to present the TBRS Community New Family Welcome Packet!

This Packet is a great resource for TBRS families. It is packed with information about TBRS, the TBRS Community, our programs, educational initiatives, and opportunities to engage in patient-centered research. This packet is designed to guide our community and communicate all that we offer. It also includes pages to print and share with clinicians and others.

Click here to access the Packet

2024 TBRS Exercise Challenge

We need participants. Sign up today!

The TBRS Community is on a mission to raise $25,000 to enhance the TBRS patient registry, driving forward treatments for Tatton Brown Rahman Syndrome. This "Move-A-Thon" invites you to embrace a healthy lifestyle while supporting a vital cause. Whether you create a team or join one, your commitment to exercise throughout April and gather donations from friends and family will directly contribute to expanding the TBRS Patient Registry. This effort will empower scientists and clinicians worldwide to better understand TBRS, develop treatment guidelines, and advance care for those affected.

Setting up your fundraising challenge is easy: visit the TBRS Exercise Challenge page, and with just a few clicks on “Fundraise” or “Join a Team,” you can launch your personal fundraising page. Get ready for a month filled with fun, friendly challenges, and community spirit, all while making a significant impact.

This initiative, conceived by our very own Ashley Hatton, promises not just to fundraise but to bring us together in support of a great cause. Need assistance setting up your page? Have questions? Reach out to Kit at [email protected]. Let's make a difference together!

TBRS Conferences in Spain and France!

We have 2 TBRS Conferences coming up in March:

The Asociación Española de Síndrome de Tatton Brown Rahman (Spanish Association of TBRS), in conjunction with the TBRS Community, are hosting a conference Friday, March 22 - Sunday, March 24, 2024. This conference will be held in Burgos, Spain. Click here for more information.

Another TBRS Conference will be held on Friday, March 29 in Nancy, France. This conference is for both families and scientists working with TBRS / DNMT3A. Click here for more information.

Click here for a video from Spain!

The TBRS Community's New Director of Development, Chelsea Spence!

Chelsea Spence joins the TBRS Community as the new Director of Development, bringing over thirteen years of dedicated experience in philanthropy, fundraising, and nonprofit management. With a Master’s in Organizational Leadership specializing in Philanthropic Leadership from the University of Denver, Chelsea’s strategic expertise and commitment to developing meaningful relationships with donors are poised to significantly enhance the TBRS Community’s efforts in supporting individuals affected by Tatton Brown Rahman Syndrome. We are excited to have Chelsea’s expertise to help guide the TBRS Community in fundraising and development efforts!

Click here to view the full story

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February 2024 (Rare Disease Day)

Special Edition:

Rare Disease Day 2024

Happy Rare Disease Day!

In honor of this important day, and to celebrate the

10th Anniversary of the identification of TBRS on March 9th,

we would like to share some exciting upcoming events and information!

EVENT: Ask Us Anything on Rare Disease Day 2024!

Ready for an enlightening and engaging Rare Disease Day event hosted by the TBRS Community? Join our "Ask Us Anything" session with Eric, our Science Director, Kit, our Research Coordinator, and Jill, our Founder and Executive Director. No question is too big or small—whether it's about the science behind TBRS, getting support, our projects within the TBRS Community, or just a funny inquiry, we've got you covered.

This event will take place Thursday, February 29 at 12pm EST on Facebook Live. If you aren't part of our private Facebook group, request to join here. It will be recorded if you are unable to attend in person! Please comment on Facebook with any questions prior to the event. Hope to see you there!

5th Annual TBRS Challenge - Get started now!

Join the movement this Rare Disease Day by participating in the TBRS Exercise Challenge!

The TBRS Community is on a mission to raise $25,000 to enhance the TBRS patient registry, driving forward treatments and a cure for Tatton Brown Rahman Syndrome. This "Move-A-Thon" invites you to embrace a healthy lifestyle while supporting a vital cause. Whether you create a team or join one, your commitment to exercise throughout April and gather donations from friends and family will directly contribute to expanding the TBRS Patient Registry. This effort will empower scientists and clinicians worldwide to better understand TBRS, develop treatment guidelines, and advance care for those affected.

Random Acts of Kindness for TBRS

Celebrate Rare Disease Day 2024 and the 10th Anniversary of the identification of Tatton Brown Rahman Syndrome (TBRS) by joining our Random Acts of Kindness Campaign.

Initiated by the TBRS Community, this heartfelt campaign aims to raise awareness and support for TBRS through acts of kindness that anyone can perform. From buying a stranger a coffee to volunteering, your actions can help foster a culture of empathy and support.

After each act, we encourage you to share the TBRS Random Acts of Kindness Flyer, (available for print here), to educate others about TBRS and to encourage them to pay it forward.

Jill Kiernan, the TBRS Community’s Executive Director, highlights the importance of community support and the powerful chain reaction of goodwill that can be sparked by simple acts of kindness. As we commemorate a decade of TBRS awareness, let's come together to make a significant impact. Discover more about how you can participate and help spread the message of love and support for TBRS by reading the full story on our website.

Count Me In for TBRS - Help us learn how many people have TBRS!

Wondering how many people worldwide are affected by TBRS?

Our Count Me In for TBRS initiative is here to answer that question! This Contact Registry collects contact and demographic information from diagnosed individuals and families, allowing us to estimate global TBRS prevalence more accurately. The data also provides valuable insights for researchers, helping them understand the distribution across countries and diverse ethnicities within our community.

Rest assured, your privacy is a priority – no personally identifiable information is shared without your permission. Families can customize their participation, choosing what information to share and whether they want to be contacted.

Join Count Me In for TBRS.

It takes 5 minutes to contribute to our understanding of TBRS and to support ongoing research. Click here from more information!

New Family Meet-Up: March 13!

Join us for our quarterly virtual New Family Meet-Ups hosted by the TBRS Community!

Whether you're newly diagnosed or a long-standing member, these informal gatherings provide a space to ask questions, discuss current TBRS-related research, explore community resources, and connect with others. We have three Meet-Ups planned this year, with one coming up in March!:

Wednesday, March 13, 5pm - 6pm EST
Saturday, June 15, 11am - 12pm EST
Saturday, September 7, 11am - 12pm EST

Click here for more information. Stay updated on this and other events by subscribing to our calendar!

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February 2024

Community Newsletter | February 2024

A Year in Triumph: How the TBRS Community Transformed Support into Action in 2023

Discover the milestones of the TBRS Community in 2023! From groundbreaking research initiatives like the launch of our Biorepository and the TBRS Accelerator Grants to enriching collaborations and the empowering TBRS Summit, we made incredible strides towards understanding and treating Tatton Brown Rahman Syndrome. Thanks to our donors, researchers, and families, we're bringing hope and tangible solutions to those affected by TBRS. Read the full story of our year's achievements and how we're transforming support into action on our website. Join us as we continue to forge a brighter future for the TBRS Community. Click here to read more.

As we celebrate the successes of 2023, we look forward to exciting events in 2024. Stay tuned for more news about the 10th Anniversary TBRS Awareness Day, the TBRS Exercise Challenge, and Rare Disease Day 2024! Email [email protected] if you have ideas on how to celebrate, or if you would like to be involved.

Shared Journeys: The Impact of the TBRS Summit on Families in 2023

Read heartwarming reflections from the unforgettable TBRS Summit at Morgan's Wonderland Camp and the year's highlights within our TBRS Community. Families share their profound experiences of connection, acceptance, and joy, painting a vivid picture of a community that feels more like a family. From witnessing personal breakthroughs to celebrating the strides in TBRS research, discover how these moments have fortified our bonds and fueled our hope for the future. Read more about the Summit's impact and the daily victories that define our journey. Click here to read more.

Meet Kacee Richter: The Heartbeat of Our TBRS Family

Read how Kacee, a founding board member and the President of our community, fuels our mission with unparalleled dedication and love. From organizing memorable events like the Baylor meet-up to raising over $145,000 for TBRS research, Kacee's efforts embody the spirit of collaboration and hope. Her story is a testament to the incredible impact one person can have on our collective journey towards finding treatments for TBRS. Join us in celebrating Kacee and the powerful bond of our TBRS family. Click here to read more.

Introducing the TBRS Community Blog!

We are thrilled to announce the launch of a new and exciting feature on our website - the TBRS Community Blog! This blog has been created to keep our community informed about TBRS Community research efforts, new resources, and upcoming events

Every week, our Research Coordinator, Kit Church, will provide you with updates on ongoing projects, breakthroughs, and events within the TBRS Community. New blog posts are added every Friday. Whether you are a patient or family member seeking the latest information, or a scientist eager to stay in the loop, our blog aims to bridge the gap between research and community support. To access the blog, click here!

Upcoming Events:

New Family Meet-Up: Newly diagnosed families are encouraged to join our Executive Director and TBRS Parent, Jill Kiernan. Learn the newest TBRS-related information, hear about upcoming events, and find out more about programs the TBRS Community has to offer.
Friday, March 8, 4:00-5:00PM EST. Register here
Special Needs Future Planning Coaching Session: A series of meetings to help coach our community on special needs planning. Come here about resources available and get support from other caregivers who are going through the same process. All are welcome.
Monday, February 12, 4:00-5:00PM EST. Register here.

Reach out to [email protected] for more information or questions.

We are hiring!
The TBRS Community Seeks Development Director

We are thrilled to announce that the TBRS Community is expanding our team with the addition of a new Development Director! This pivotal role will spearhead our fundraising efforts, helping us to support more families affected by Tatton Brown Rahman Syndrome and advance crucial research.

Curious to learn more about this position? Click the link below to read the full story on our website. Share the job posting with your network and join us in recruiting our new Development Director. We are setting the stage for an even more impactful future.

Read the Full Story Here

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November 2023

Community Newsletter | November 2023

TBRS Community Summit 2023 Recap

Our 2023 TBRS Summit, held at Morgan's Camp, was nothing short of amazing. Attendees learned the latest clinical and research updates and families forged bonds and lasting friendships that will undoubtedly provide invaluable support and understanding on their TBRS journey. Those who couldn't join us in-person were able to attend virtually and we offered live, translated captions to our non-English speaking attendees.

Morgan's Camp, with its ultra-accessible activities, played a crucial role in the success of this event. The venue offered a truly inclusive and welcoming environment, enabling everyone to participate fully, regardless of their abilities. It added a touch of magic to our gathering, making it a heartwarming experience for all.

In addition to celebrating our collective achievements, we proudly announced our commitment to fund at least $100,000 worth of TBRS research over the next year. This exciting initiative is a significant step in identifying treatments for TBRS.

Together, we are not just advancing research; we are creating a vibrant, supportive community. We extend our deep gratitude to our sponsors, whose support made this all possible. Thank you for being a part of this remarkable journey.

Link to the 2023 Summit REFERENCE DOCUMENT
which includes how to access recording links and key material.

Interested in participating in TBRS Research?

How to get involved more can be overwhelming and somewhat confusing. We have created a simple step-by-step guide for everyone to reference as they begin their journey to help contribute to advancing research on TBRS. Download and keep it as a reference. Please reach out with any questions, we are here to help! Email: [email protected]

Volunteer of the Year announced:

Congratulations to Erin Rooker!

Volunteers are essential for our organization, as well as all rare disease orgs, to make large strides in research and support. As such, we'd like to start recognizing those who go above in beyond, using so much of their time to help our organization succeed. This year, Erin Rooker has been announced as the TBRS Community Volunteer of the Year! Erin has worked endlessly this year on marketing, communications, project management, and all other tasks thrown her way! Thank you for all that you do, Erin!

View the full announcement here.

Katherine McMahon Memorial Award announced:

Congratulations to Dr. Harrison Gabel!

Katherine McMahon was a founding board member of the TBRS Community, and provided empathy and support to all members of the Community as if they were her own family. Her memory has been preserved with the establishment of the Katherine McMahon Memorial Award in 2020.

This year, Dr. Harrison Gabel has received this award; Dr. Gabel drive and passion for TBRS research to help those affected by the disorder truly embodies Kathy's spirit. He has gone above and beyond in his search for answers, and we can't wait to see all that he does in the future!

View the full announcement here.

A HUGE thank you to all who held Family Fundraisers this year!

The TBRS Community would like to extend a heartfelt thanks to 3 families who went above and beyond with fundraising this year!:

Kacee Richter and her family organized a lively cornhole tournament in Texas, raising an impressive $45,000
Terra Clubine and her family also hosted a cornhole tournament in Kansas, gathering more than $27,000 for research through their event.
The Glenn family led the ‘Stryker Strong’ Golf Tournament, which resulted in a generous donation of $25,000 to the TBRS Community.

If you are interested in 1:1 coaching on how to host a family fundraising event, please reach out to [email protected]

Read the full announcement here!

Become a GEM for TBRS!

Many TBRS families are facing multiple health issues at the same time, and urgently need your help. Become a hero for those who need you most - become a GEM (Give Every Month)!

Becoming a recurring donor will give you the opportunity to impact the lives of those with TBRS in a meaningful way! Donations will be used to fund crucial research, provide vital resources to families, and improve the quality of life of those in crisis. Donate here or for more information, please view the full announcement on the TBRS Community website!

TBRS in the News!

Meet. Support. Advance. Raising awareness of another Rare Disease - TBRS Community by ABCs of Disability Planning.

Our very own Jill Kiernan, Executive Director of the TBRS Community, was recently interviewed on the "ABCs of Disability Planning". Check it out! Click above download and listen wherever you get your podcasts.

Upcoming Events:

New Family Orientation: Newly diagnosed families are encouraged to meet with our Executive Director and TBRS Parent, Jill Kiernan. Learn the newest TBRS-related information, hear about upcoming events, and find out more about programs the TBRS Community has to offer. Schedule here
TBRS Dads' Group: Casual, online meet-up for TBRS Dads and male caregivers to discuss their experiences, share resources, and offer support. All are welcome. Our next meeting is November 11, 11:00 - 12:00 PM EST. Register here.
TBRS Patient Advisory Committee: This committee will meet quarterly to ensure that the voices and perspectives of those directly affected by TBRS are heard. Members will provide valuable insights into the unique challenges and needs of the patient community. Members can include diagnosed individuals and caregivers. These individuals will contribute their lived experiences, knowledge, and expertise to influence our programming and research agenda. Our next meeting is November 30, 12:00 - 1:15 PM EST Register here.
Parent and Caregiver Social/Support Group: The TBRS Community offers Parent and Caregiver Group via Zoom, so families from all around the world can participate. We create a safe place to meet and share thoughts, feelings, resources, concerns, and emotions without judgment. Our next meeting is November 19, 3:00 - 4:00 PM EST. Register here
TBRS Research Roundtable: As part of our continued development of the TBRS Collaborative Research Network, the TBRS Community hosts Research Roundtables as an opportunity for researchers to connect, collaborate, and learn from one another. This Research Roundtable will focus on advancing research initiatives for TBRS through the creation of working groups. We will also be discussing our Request for Proposals for two $50,000 grants that will be released shortly! Our next meeting is December 8 from 12:00 - 1:30 PM EST. Register here
Diagnosed Individual Social Group: The Social Group for Diagnosed Individuals is a virtual meeting. Meet with other diagnosed individuals, get to know one another, and have some fun! All are welcome. Our next meeting is December 9 from 2:00 - 3:00 PM EST. Register here

All are welcome to attend. Reach out to [email protected] for more information.

Calling All Patients and Caregivers:
Join the Patient Advisory Committee

What is the Patient Advisory Committee?

Our Patient Advisory Committee is a collection of patients and caregivers who advise and direct the organization's work and research agenda with a patient-centered perspective. TBRS patients and families are invited to participate in this initiative!

Why participate?

Having the perspective of TBRS patients and families is CRUCIAL in knowing how research and programming can best support our patient community.

How much of a time commitment will this be?

The Patient Advisory Committee is currently planning to meet quarterly (i.e. four times a year). These meetings will be about an hour long to allow everyone to share their perspective.

How do I participate?

Our next meeting is November 30 at 12:00 PM EST. Contact Kit Church, Research Coordinator, TBRS Community at [email protected] with any questions. Register here.

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