We celebrated Rare Disease Day on February 29th. Watch the first five minutes of #RareDiseaseDay and see National Institutes of Health (NIH) Director Francis Collins spotlight Moebius syndrome! The day was established to raise awareness with the public about rare diseases, the challenges encountered by those affected, the importance of research to develop diagnostics and treatments, and the impact of these diseases on patients’ lives.
Moebius syndrome News
*Announcement* The Moebius Syndrome Foundation is expanding its Young Adult Advisory Board to include a more diverse age range. We are now seeking applications from young adults with Moebius syndrome aged 16-25 to join. This group will serve an advisory role to the Moebius Syndrome Foundation Board of Directors, keeping them appraised of issues relevant to their age group. For example, the board may suggest ideas for conferences and engage in social media campaigns. The board will meet via videochat approximately ...READ MORE »
The Moebius Syndrome Foundation is so excited to announce that it has received the Global Genes RARE Patient Impact Grant. The grant support will educate the Moebius community about Oral Placement Therapy at the upcoming Moebius Syndrome Foundation Conference. For the first time, Feeding and Speech Clarity consultations will be offered free of charge! Two therapists will provide individual speech & feeding consultations. Each is a 45 minute evaluation which provides an overview of the muscle based activities that ...READ MORE »
A few weeks back I was speaking with someone and they mentioned that members of the Moebius community want to raise awareness of the condition and that some have done a really good job of working with their local schools, government representatives and media. My background is in public relations/communications but also in advocacy, so my ears perked up. After a lot of planning, we are proud to announce the Moebius Syndrome Foundation Champion™ Program. For those that are interested, we ...READ MORE »
The summer is officially coming to an end. It’s Back to School time! As you prepare your children for a new classroom and new routine, you may consider sending a letter to their new teacher and/or classroom. Many parents find this to be a helpful tool in educating the class about Moebius syndrome. Click here to read the letter. You can download a copy in Microsoft Word so you can personalize the letter.
It has been a busy couple of months since I began as the Executive Director for the Moebius Syndrome Foundation. I have had the opportunity to talk with amazing people — and I can’t wait to meet you all in Long Beach next year! Allow me to update you on some of the items I have been working on this summer. Just last month, the foundation’s board of directors met in Long Beach, at the site of the 2016 conference hotel. We ...READ MORE »