Myhre Syndrome Foundation

10/13/2026

We did it! We not only reached our target of $26,000, but smashed it, raising $30,000! Thank you to everyone who held events, shared their fundraising pages in their communities, and attended the conference.

We will fund the science to find treatments because of our collective action. As we look ahead to the end of the year and the season of giving, let's all come together and accelerate our treatment discovery program. More soon on our end-of-year plans!

10/07/2026

If you live with Myhre syndrome, your body holds data that doesn't exist anywhere in the world yet.

The Myhre Syndrome Foundation is launching a first-of-its-kind wearables pilot, and we're looking for 10 participants from our global community to help build the very first real-world physiologic baseline for Myhre syndrome.

No clinic visits. No travel. Just a small wristband, a brief daily voice note, and 6 months of your time.

This data doesn't exist yet. You could help create it.

Learn more and see if you qualify: https://www.myhresyndrome.org/wearables

10/05/2026

Did you know that many workplace giving schemes will double your donation? Check your HR department or workplace giving portal, as many companies are now ready to help support your end-of-year giving.

If you need any help from us, drop us a note at [email protected], and we'll be happy to help.

09/30/2026

On Saturday, over 65 community members came together and enjoyed a day of learning, interaction, and shared support. It was wonderful to see so many new faces and hear their stories, and we can't wait to put the ideas from this meeting into action.

Thank you to all our speakers and to all of our donors! We have just surpassed $17,000, and with your help we know we can reach $20,000 soon.

Keep the donations coming, keep sharing your fundraising pages, and together we can fund the science to find treatments.

https://pro.gofundme.com/give/783346 #!/donation/checkout

09/23/2026

The meeting invites have been sent - if you're planning on joining us, don't delay in registering! We can't wait to see you!

https://www.myhresyndrome.org/m4m26

09/22/2026

Haley will be talking about her diagnosis journey at the MSF Virtual Conference on Saturday!

Don't miss it - register today at https://www.myhresyndrome.org/m4m26

09/21/2026

Two ways to help:

1. Sign up for the virtual conference.
2. Donate to help us fund treatment - every dollar counts.

https://www.myhresyndrome.org/m4m26

09/18/2026

Join Our Virtual Coffee Hour This Sunday
Sunday, 20 September - 6 AM PST / 9AM EST
Come share your story with us and make new friends.
https://www.myhresyndrome.org/events

09/17/2026

09/17/2026

Allison Breininger, founder of Negative Space and a long-term caregiver herself, will lead an interactive workshop on Anticipatory Grief. This topic came directly from you, and we listened. Grief extends far beyond the loss of a person. It can live in the loss of identity, of an imagined future, of relationships, and so much more. We're honored to have Allison guide us through this important conversation. Register here: https://www.myhresyndrome.org/m4m26