Updated: April 16, 2024
Meet the Parents:
Our charity will schedule our third forum to connect parents and caretakers of children diagnosed with either SMA-PME or Farber disease.
The meeting will be held on a date to be determined, and is expected to last about an hour.
ALL PARENTS AND CARETAKERS are invited to Zoom in to help yourselves and each other. You might talk about medications, therapies, or other treatments that have worked well for your child(ren).
The Zoom link, meeting ID and password will be provided.
Meeting ID: TBD
Password: TBD
If you would like to be part of Meet the Parents, please email hope4adeline@gmail.com with the subject line: “Meet the Parents.”
NOTE: You do not need to speak or understand the English language to attend. Our Zoom app will translate for you. You can talk in your language, and the app will translate your speech into captions in other languages so the other parents will understand you.
We are capable of real time translation into 37 languages.
This forum is for YOU! Please come!
Stories
SMA-PME Research discovers new cases of both SMA-PME and Farber disease frequently. You can read about their stories in the pages that follow.
All stories and photos were released with permission of the children’s parents.
SMA-PME Research 