Author name: tbrsadm

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

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

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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Kit Church

Research coordinator joins TBRS Community

Kit ChurchKit Church has a background in public health genetics and experience supporting people with genetic and developmental disorders.

The TBRS Community is excited to announce that Kit Church has joined the organization as Research Coordinator. Church will work with Executive Director Jill Kiernan and Community volunteers to expand our Collaborative Research Network, organize our annual research meeting and scientific programming, and advance research in line with our families’ top priorities. She will also develop educational content and lead initiatives to fund research projects.

“We are so delighted Kit has joined our team. She has the perfect blend of skills and experiences to advocate for TBRS research and keep our families informed of the latest advances,” says Kiernan.

Church has a BS in Biology from the University of North Carolina Asheville, with a focus on genetics and mental health. During this time, she planned events to benefit autism programs through her position as Philanthropy Vice President at her sorority, Alpha Xi Delta. She has since moved to Pittsburgh, PA, with her husband Spencer and their three cats, and is currently pursuing an MPH in Public Health Genetics at the University of Pittsburgh.

Kit has known she wanted to work in the nonprofit sector for most of her life. She has worked with patients with genetic and developmental disorders for more than five years and has a real passion for helping others. She also has a background in genetic research from her undergraduate university. In her free time Kit enjoys crocheting, playing ukulele, and traveling.

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

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

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)

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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.

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TBRS and Leukemia Risk: Discussion and question/answer session for families

For families diagnosed with TBRS: Join us to discuss TBRS and leukemia risk with Dr. Rachel Rau

Category:      Event
Location:      https://www.airmeet.com/e/20007ce0-
Date:              02/26/22 – 02/26/22
Duration:        1 Days
Time:              5:00 PM – 6:00 PM (EST)

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Dr. Rachel Rau is an Assistant Professor of Pediatrics at Baylor College of Medicine and a pediatric hematology-oncology doctor in Houston, Texas. She specializes in the care of children with blood disorders including leukemia. As the leader of the Rachel Raul Lab, she studies DNMT3A and TBRS. Click here to register. February 26, 2022, 5:00 – 6:00 pm Eastern (please convert to your local timezone). Please email your questions in advance to [email protected]

*The TBRS Community is hosting this talk to provide basic information. We are not offering medical advice. Please refer to your clinical team for individualized medical advice. 

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