Events – TBRS Community

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!

Wednesday, March 13, 5pm – 6pm EST (click here to register)
Saturday, June 15, 11am – 12pm EST (click here to register)
Saturday, September 7, 11am – 12pm EST (click here to register)

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

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2023 TBRS Community Summit

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The 2023 TBRS Community Summit is bringing our community back together for the first time since 2011.

This year we are combining our Family Conference and Collaborative Research Network (CRN) Conference into one joint Summit! The event will be held October 11 – 15, 2023 at Morgan’s Wonderland Camp in San Antonio, Texas – the first ever fully accessible camp for people of all needs! For more information please click here for information sheets for both CRN Members and Families. To register please click here. To view the program click here.

Event:
Location: Morgan’s Wonderland Camp in San Antonio, Texas
Date: 10/11/23 – 10/15/23
Duration: 5 Days
Time: 5:42 PM – 5:42 PM (EST)

Click to view the Summit Program

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2023 TBRS Exercise Challenge

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The 2023 TBRS Community Summit is bringing our community back together for the first time since 2019!

Event:
Location:
Date: 04/01/23 – 04/30/23
Duration: 30 Days
Time: 7:22 PM – 7:22 PM (EST)

Click to view images

Who Can Participate? Anyone in the TBRS Community, Friends and Family

When is it? Begin gathering your pledges in March and start your Challenge in April (you pick the start and end date that works for you).

How Does it Work?

– Select any movement activity you would like to do. Walking, jogging, bicycling, riding in a wagon/stroller, swimming, dancing – really any activity of your choice that promotes movement!

– Select a realistic goal. Example: I will walk “10” miles, or I will ride my bike for “120 minutes” in the month of April.

– Ask family, friends, neighbors, coworkers to sponsor you.

– Track sponsors on the printable sheet and/or using the online platform:
https://tbrscommunity-bloom.kindful.com/tbrs-exercise-challenge-2023

– Track your own movement activity progress.

– When your Challenge is finished, everyone is responsible to collect from their individual sponsors.

Why Donate? The TBRS Community’s goal is to advance TBRS research through the TBRS Collaborative Research Network and a global patient registry. We bring together TBRS families by hosting an annual Family Conference, providing education and emotional support, awarding scholarships to people with TBRS, sending care packages to families in crisis, and so much more. Donations are tax deductible.

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2022 TBRS Family Conference

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The 2022 TBRS Community Virtual Family Conference will feature talks from clinicians and researchers including Dr. Kate Tatton-Brown, Dr. Harrison Gabel, Dr. Serge McGraw, Dr. Karine Doiron, Dr. Rachel Rau, Dr. Ayala Tovy, Jaime Reyes, Dr. Rosanna Weksberg, and Dr. Zain Awamleh . Join us to receive new updates from the TBRS Community Patient Registry, meet other families, and get your questions answered.

Category: Event
Location: Virtual Event
Date: 10/07/22 – 10/08/22
Duration: 2 Days
Time: 5:00 PM – 3:00 PM (EST)

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TBRS Collaborative Research Network Conference, 2022

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Scientists and clinicians will gather to discuss TBRS, DNMT3A, and related topics.

Category: Event
Location: Virtual
Date: 10/07/22 – 10/08/22
Duration: 1 Days
Time: 10:00 AM – 4:00 PM (EST)

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Key note speaker will be Prof. Adrian Bird, discussing The Biology of Rett Syndrome.

This virtual event will feature presentations by scientists and clinicians who are experts on TBRS, DNMT3A (the gene that causes TBRS), epigenetics, overgrowth and neurodevelopmental disorders, and related topics. The goals of the meeting are to foster discussion among this group of scholars and develop research priorities for understanding and, ultimately, treating TBRS. The conference will be a mix of pre-recorded talks, live Q&As, and open discussion forums. To encourage collaboration and allow for the presentation of preliminary data and work in progress, this event is not open to the public.

TBRS Community is putting out a call for posters for the Conference! We are looking for presentations that reflect research on either Tatton Brown Rahman Syndrome, DNMT3a, or related issues. Please submit through this link. Rules for submission are linked here.

Please email [email protected] if you would like an invitation to the meeting.

Thanks to our generous funders, registration is free. We appreciate your donations to help us continue valuable programming to advance TBRS research. Donate here.

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Kiernan Family Cornhole Tournament – Benefitting the TBRS Community

Events / tbrsadm

Food, Fun, Music, Wine, and Cornhole! All to benefit the TBRS Community!

Category: Event
Location: Millbrook Vineyards and Winery, 26 Wing Road, Millbrook, NY
Date:   08/14/22 – 08/14/22
Duration:   1 Days
Time:   4:00 PM – 8:00 PM (EST)

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Come one, come all! Join us for a day of fun, food trucks, drinks, music, and cornhole on August 14, 2022 from 4:00 – 8:00 PM EDT at the Millbrook Vineyards and Winery on 26 Wing Road, Millbrook, NY. All proceeds will benefit the TBRS Community. Register for cornhole here. 2 people per team, $80 per team. Double Elimination. 1st Prize $300, 2nd Prize $200, 3rd Prize $100. You don’t have to play cornhole to attend. There is lots of fun to be had. Bring your friends!

Check out our sponsorship form for details on how to support this event.

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Nutritional Support for People Diagnosed with TBRS, Sarada Bernstein MPH, RD

Events / tbrsadm

Discuss nutritional support strategies for people diagnosed with Tatton Brown Rahman Syndrome.

Category: Event
Location: Virtual Meeting – Link will be forwarded after registration
Date: 08/08/22 – 08/08/22
Duration: 1 Days
Time: 5:00 PM – 3:00 PM (EST)5:00 PM – 6:00 PM (EST)

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TBRS Education and Outreach Series: Sarada Bernstein is a Registered Dietician with extensive experience working with neurodiverse populations to develop and integrate healthy lifestyle skills. She will be discussing nutritional support strategies for families affected by TBRS. Join us for this free, virtual meeting on August 8 at 5:00 pm EDT. Register here.

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TBRS Family Meet-Up: For newly diagnosed families to meet and learn about TBRS

Events / tbrsadm

Join us to network and learn at this virtual meeting.

Category: Event
Location:
Date:     07/06/22 – 07/06/22
Duration:   1 Days
Time:     5:00 PM – 6:00 PM (EST)

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The TBRS Community is hosting a virtual meet-up 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 would also like to focus on patient priorities and what YOU would like to see from our team in terms of programming, research, outreach, and support. We want to hear about your needs and how we can best serve you, as part of our community!

Register here:

https://docs.google.com/forms/d/e/1FAIpQLSe74BsPqdbLR6IIlP9R2lPT-jCxYKxtSLaakrLkYslV0Mvrnw/viewform?usp=sf_link

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Coffee with Kate: Meet with Dr. Kate Tatton-Brown

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This is an exclusive meeting with Dr. Kate Tatton-Brown, available to those who completed all of the surveys in the TBRS Community Patient Registry.

Category: Event
Location: Virtual Event
Date:   03/13/22 – 03/13/22
Duration:   1 Days
Time:   12:00 PM – 1:00 PM (EST)

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This event is available to diagnosed families who have completed 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.

At this event, Dr. Tatton-Brown will present the latest TBRS-related updates and answer questions from families. Please email [email protected] if you completed all of the surveys by February 28, 2022, but have not received an invite.

March 13, 2022, 12:00 – 1:00 pm Eastern (please convert to your local timezone)

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2022 TBRS Community Challenge

Events / tbrsadm

The TBRS Community challenges YOU to participate in the TBRS Challenge – A FUNdraiser that Promotes Movement & Health!

Category: Event
Location:   Anywhere you can move your body
Date:   03/01/22 – 04/30/22
Duration:
Time:   8:00 AM – 8:00 AM (EST)

Click to view images

Who Can Participate?

Anyone in The TBRS Community, Friends, and Family

When is it?

Begin gathering your pledges in March and start your Challenge in April (you pick the start and end date that works for you).

How Does it Work?

1. Select any movement activity you would like to do. Walking, jogging, bicycling, riding in a wagon/stroller, swimming, dancing – really any activity of your choice that promotes movement!

2. Select a realistic goal. Example: I will walk “10 miles,” or I will ride my bike for “120 minutes” in the month of April.

3. Ask family, friends, neighbors, coworkers to sponsor you. They can pledge dollars per minute/mile or make a flat donation.

4. Track sponsors on the printable sheet and/or using the online platform. (https://go.rallyup.com/tbrs).

5. Track your own movement activity progress.

6. When your Challenge is finished, everyone is responsible to collect from their individual sponsors.

Why Donate?

The TBRS Community’s goal is to advance TBRS research through the TBRS Collaborative Research Network and a global patient registry. We bring together TBRS families by hosting an annual Family Conference, providing education and emotional support, awarding scholarships to people with TBRS, sending care packages to families in crisis, and so much more. Donations are tax deductible.

Click to view images

2022 TBRS Community Challenge Read More »