Myhre Syndrome Foundation

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Keller, TX
Myhre Syndrome Foundation

We are dedicated to serving Myhre Syndrome families, funding vital research and finding answers.

08/28/2026

We've created a handy guide to help you with your Move for Myhre fundraising this year. If all members of our community here created a fundraiser and raised $500, we'd collectively achieve $100,000! Don't underestimate the power of your contribution when we all come together.

Find the playbook herehttps://static1.squarespace.com/static/5c7804b5797f7410f57b25ea/t/6a9061eb744afb478bd0a92b/1787847147284/Move+for+Myhre+Playbook+2026.pdf

Move for Myhre links here: https://www.myhresyndrome.org/m4m26

Thank you for getting out there and raising awareness and funds for Myhre syndrome.

08/26/2026

Explaining Myhre syndrome to someone new? We've got you. Download our free Patient & Family Handbook — written in plain language and updated for 2025.

https://www.myhresyndrome.org/handbook

08/24/2026

Let's kick off the week by sharing some of our weekend activities. Sometimes it's the simplest of things that can bring the most satisfaction!

Let us know what you enjoyed doing this weekend; we love to hear from you!

08/20/2026

BIG NEWS - MSF & Camp Cole team up to provide our first family camp, happening Friday 20th to Sunday 22nd August 2027.

We chose Camp Cole in South Carolina, USA, as our venue because of what they do best - serving children, teens, and adults navigating serious illnesses, disabilities, and complex life challenges through transformative summer camps. The venue is fully accessible and has an on-site medical facility, so you can relax and focus on connecting.

For this special weekend, the Myhre community gets to be understood, feel at ease, and not have to explain anything to anyone.

We're giving you a full year's notice so you can start planning your travel. Visit https://www.myhresyndrome.org/camp-cole and read all the details about the event.

08/19/2026

Today you can help the Myhre syndrome community with one simple step.

Start a fundraising page and help us raise funds for Move for Myhre on 26 & 27 September.

Visit https://www.myhresyndrome.org/m4m26 and select 'I want to fundraise', and a page will be created in mere moments!

08/17/2026

The community virtual conference is on September 26, and you don't want to miss it! Even if you can't attend on the day, make sure you register so you get the follow-up communications and are the first to see the recordings.

Remember, if English isn't your first language, you can choose from over 40 languages and follow along using the closed captions option on Zoom.

Pop an email to [email protected] if you have any questions.

Register here: https://www.myhresyndrome.org/m4m26

08/14/2026

Join Our Virtual Coffee Hour This Sunday
Sunday 16 August - 6 AM PST / 9AM EST
Come share your story with us and make new friends.
https://www.myhresyndrome.org/events

08/12/2026

Haley was diagnosed with Myhre syndrome at 29 years old, after many years of wondering about her symptoms. Read her inspiring story that details her early passion for dance, her drive to take on all kinds of challenges, and her life now in her dream role - a science teacher - but what you'll soon discover is that she is a masterful storyteller too.

Haley will be joining us live at our virtual conference on September 26; don't forget to register!

Read Haley's story here - https://www.myhresyndrome.org/news/haley
Register for the conference here - https://www.myhresyndrome.org/m4m26

08/10/2026

If you've been considering signing up to RoundUp, where your small change makes a HUGE difference, then now is the time.

RoundUp will donate an extra $250 to Myhre Syndrome Foundation for every TEN new RoundUp.org donors who sign up before 20th September, 2026. Twenty donors is $500, thirty is $750, and there’s no cap!

Sign up here - https://tinyurl.com/vd49eepj

Address

1710 Keller Parkway #8828
Keller, TX
76248

Website

http://www.myhresyndrome.org/

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