The Great!
I've personally experienced the results of this organization in...
Through attending the events, I've seen what a tight knit community we have. I am so appreciative of the support of our community and hope that we have been able to support the community as well!
Ways to make it better...
If I had to make changes to this organization, I would...
Try to bring everyone even closer together. This is such a rare and not well known syndrome and I think it can make people feel so isolated. I want everyone to know that they can turn to the IRSF for support as well as the latest updates on what is happening in the research department. We need to lean on each other. Only our community understands what the members of the community experience on a daily basis and it is important that we are there to listen and support each other when need be.