International Rett Syndrome Foundation
April 27, 2011
IRSF is a U.S. organization. My daughter is 31 years old and has Rett Syndrome. I have benefited from this organisation for years as one served by it. IRSF is the organization that serves families dealing with Rett Syndrome in all kinds of ways. It provides direct help for families to communiate with each other (on the Rettnet), it is a major funder of research to cure Rett Syndrome, and it is hosts major conferences for researchers and familiies to share information.
I've personally experienced the results of this organization in...
communication, conferences, direct help inidentifying medical assistance,
Ways to make it better...
If I had to make changes to this organization, I would...
This is a superbly run organization. It needs more funds, as the key to Rett Syndrome research is also the key to many other child development disorders. The Gene has been found for Rett Syndrome, making it a relatively rate opportunity for a cure.
Client Served & I am chair of the Familiy Advisory Board (in 20110 of IRSF. This is not the "Board" of IRSF, but a family committee. I have attended numerious conferenecs sponsored by IRSF and have raised funds for the organization.
Review from Guidestar