Fly Little Bird Foundation

05/08/2026

03/13/2026

Hello all,

I wanted to share the below link to the Family Registration Form for the TBL1XR1 Global Family Forum & Scientific Conference in Istanbul this fall, October 1-3, 2026 - hosted by Fly Little Bird Foundation's sister organization, Herdem Care . If you are interested in attending, please fill this out to help with the organization and planning of this event, and to ensure you are included in future communications and updates.

https://docs.google.com/forms/d/e/1FAIpQLSd1ng9Clgf7wxCeI6lcdJBsmRIV3Sq-nkTk878kepCa72kGJw/viewform

If you have questions about the conference, please feel free to email [email protected], or [email protected] (Herdem Care's email), for more information. A more detailed agenda of presentations/speakers and other conference-related information will be provided shortly.

We hope to see many of you there.

Family Registration Form 📍 Istanbul | October 1–3, 2026 This event is organized by Herdem Care - TBL1XR1 Research and Support Association, in collaboration with Massachusetts General Hospital, Acıbadem University and Altınbaş University. The following form has been prepared to support effect...

02/21/2026

Hello! As Aysegül Altinbas and her team at Herdem Care, work with us at Fly Little Bird Foundation, on developing the agenda for the TBL1XR1 Scientific Conference and Family Forum in Istanbul this fall (October 1-3, 2026), we wanted to get feedback from the community on topics of interest to you.

Possible high-level topics that could be of covered in some capacity include: recent research and scientific developments; clinical findings and medical follow-up; gene editing and potential treatment approaches.; participation in clinical research; practical guidance for daily life (therapy, education, care); Q&A sessions with specialists; family experience sharing and community support; other (?). Please let us know in the comments, DM or email ([email protected] or [email protected]) your ideas/thoughts/concerns/questions! For those who attended the Boston family forum in 2024 - feedback on what went well or could be improved is also appreciated to make sure we put together the best event possible!

Please send any feedback by end of day 2/24. Finally, if you want to make sure you are on our email distribution list for information and updates on the event, please reach out using one of the methods above. Thank you!

02/09/2026

Fly Little Bird Foundation Newsletter Vol. 2 - check it out!

02/09/2026

In honor of TBL1XR1 awareness day!

09/17/2025

Check out our FLBF Newsletter Vol. 1!

01/22/2024

Tentative Agenda for TBL1XR1 Families Forum (May 8-9 2024) at Massachusetts General Hospital:

MAY 8: CLINICIAN VISIT DAY. Children/families to see Dr. Nagy and other specialists at Massachusetts General Hospital. The three main specialists who will be available are: Dr. Nagy, a pediatric neurologist specializing in TBL1XR1, Dr. Neumeyer, a child neurologist specializing in autism/ASD; and Dr. Wishart, who specializes in pediatric physical medicine and rehabilitation. Those interested in having their children see other specialties should discuss that when they reach out to Dr. Nagy’s coordinator (contact details below).
MAY 9: TBL1XR1 FAMILIES FORUM. This will be held in a conference room at Massachusetts General. We will be reserving another room close by that will be set up for the kids to play (hopefully with volunteers to help). I don’t have the entire agenda nailed down yet, but currently plan to have the following:
· Patient experience roundtable – for families who participate and want to introduce themselves, their child, and their experience with TBL1XR1.
· Dr. Nagy and other clinicians/researchers to speak about TBL1XR1 – the gene itself and its function, TBL1XR1-related disorder/Pierpont Syndrome, and potential pathways for treatments.
· Rebecca Oberman – Program Manager for Center for Rare Neurological Diseases at Mass General and Executive Director of a rare disease foundation, to speak about how to be engaged as a patient community and fundraising ideas.
· Speaker from Mass General’s Pediatric Supportive & Palliative Care/Courageous Patients Network – speaking about maximizing quality of life for children with serious disease, and coordinating and improving families’ experience of care. (Don’t have these lined up yet, but working on it.)
· End with a fun activity for the children (music/singing-related maybe?)
If you have ideas about other speakers or topics, let me know! Breakfast and lunch will be provided. Program would end by early afternoon.
If you plan to attend, and have not done so already, please reach out to Dr. Nagy’s coordinator, Lizbeth De la Rose, (617) 724-1330, or [email protected], to set up your clinical visit for May 8. Dr. Nagy and the others will see as many patients as they can, but will be limited to the number they can see in a day. I’m working on getting a special rate for us at the Wyndham Hotel, which is right next to the hospital – details to come. Also, please register in the google excel document for my planning purposes: https://docs.google.com/spreadsheets/d/1C5CHHiDcr8IVt0ILUUQZeRwbV7RhJ7LIP11dXHd5rWI/edit =0
Reach out with any questions!

02/24/2023

✨ Francesca’s Story
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“Hello everyone my name is Francesca. I'm 3 years old I have a variant of the gene TBLX1R1. I'm sweet and stubborn!”

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02/22/2023

✨ Thomas’s Story
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“Hi, my name is Thomas. I am a child with a TBL1XR1 gene mutation. I am a sunny and very affectionate child.”

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02/02/2023

✨ New Fly Little Bird Foundation shirts are up in some new styles and colors!

✨ Youth and Adult sizes available.

✨ 100% of the proceeds go toward the foundation.

➡️ https://www.bonfire.com/fly-little-bird-foundation/

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