Move for Myhre 2026 - Virtual Community Conference - Saturday, 26 September 2026

Katie raising awareness and funds in her community for Move for Myhre!

This year's 5th Annual Move for Myhre fundraising weekend is extra special - we're holding our next Virtual Community Conference on Saturday, September 26.

Event highlights include:

  • Ask Me Anything with Dr. Angela Lin & Dr. Bert Callewaert

  • Anticipatory Grief workshop with expert Allison Breininger

  • Emergency 101 with Dr. Shaine Morris (Cardiologist) & Dr. Edith Neptune (Pulmonologist)

Registering for the conference automatically creates a personal fundraising page for you. The event is free to attend, but if you can, we'd love it if you could share your page.

We're aiming to raise over $26,000, which would be our biggest year yet, and are suggesting a target of $250 per family. Whether it's a bake sale, a sponsored walk, or simply sharing the link with friends and family, every donation helps.

You only need one conference pass per family, and we'll send you the Zoom link a few days before the event.

Any questions? Email us at events@myhresyndrome.org

Register here

Virtual Community Conference Agenda

All times indicated are Eastern Standard Time

9:00am

Welcome & Updates from Executive Director, Christiana Thomas

20 mins

Latest updates and news from the Myhre Syndrome Foundation
9:20am

Fireside Chat: Clinical Research

50 mins  ·  35 mins conversation + 15 mins live Q&A

Armelle Pindon, Chief Scientific Officer, MSF, Dr. Valerie Cormier-Daire and Zac Burns bring you up to speed on all the latest clinical research updates.
10:10am

Gene Editing Explanation

15 mins

Speaker details coming soon
10:25am

How to Participate in Research Today

5 mins

Presented by the MSF President

Speaker details coming soon
10:30am

Break

10 mins

10:40am

Clinician Ask Me Anything

50 mins

Dr. Angela Lin, MGH Boston and Dr. Bert Callewaert, Ghent University, both geneticists and leaders in Myhre clinical research are here to answer all your questions!
11:30am

Emergency Room 101

50 mins

Dr. Shaine Morris, Cardiologist, and Dr. Enid Neptune, Pulmonologist, talk us through what to do and insist upon in an emergency.
12:20pm

Anticipatory Grief - Interactive Workshop

45 mins

Allison Breininger, long-term caregiver and founder of The Negative Space, will host an interactive session on anticipatory grief, how and when these feelings emerge and how we cope when they do.
1:05pm

Lunch Break

20 mins

1:25pm

Adults Living with Myhre

10 mins

Speaker details coming soon
1:35pm

Breakout Sessions

35 mins

Pre-assigned and selected at Registration

Caregiver Chat, Adults Living with Myhre (18+), Newly Diagnosed, Newly Diagnosed - Early Childhood (under 5 years old), Here to Find Friends
2:10pm

Celebrations & Achievements from the Myhre community

5–10 mins

2:20pm

Closing Comments

5 mins

Christiana Thomas, ED, MSF
2:25pm

End