Does anyone know if there is any charity or organization that helps fund research for ADEM? My Dr told me to concentrate my efforts towards MS, since they are closely related. But, until my son's death, he'd never even heard of ADEM.
Thank you!
Interesting question. I have yet to come across an ADEM charity, in fact the only valuable resource I've found is BensFriends :) If you come across a charity or research project for ADEM please let this community know.
I joined the TMA, Transverse Myelitis Association, as they take in all the rarer forms of demyelinating diseases, including ADEM. In fact, each summer they help to sponsor a camp for TM, ADEM, NMO and Optical Neuritis. We have applied to go this year and are looking forward to meeting other ADEM families and learning how they cope. Of course their main focus is TM, but if it hadn't been for the TMA, I would have never made some beginning contacts with an ADEM family that helped to answer questions between Greta's diagnosis and her first follow up.
The TMA has a scholarship for a Fellow every year and this helps pediatricians get trained with some of the best (UT Southwestern) and take that knowledge with them. Little by little, we will let folks know about these rare diseases!
good question!