Hello,
I am working on creating an environment that supports existing non-profits that provide care for those afflicted with Neurofibromatosis. My goal isn't to duplicate but to help fill in the missing pieces. I will likely redirect people to their respective NF chapter who can provide better one-on-one support... but my goal is to have a more central or collaborative system of organizing peoples stories, creating a team of people who's chief mission/goal is to educate the public, mainly the media on the condition. The most important element above all is that those affected by the condition have access to accurate information from trusted sources. I hope that I can assist in pointing people into that direction and will make a commitment to cited and documenting any and all sources whenever possible.
Thank you for your time and understanding!
Jonathan
This is great. Are you part of the inspire board as well? Just another great resource to connect with other who have, or who are parenting kiddos with NF. :)
ReplyDeleteExcited to see where this leads you. Please let me know if you need anything more specific. I have been researching, contacting, and storing things away since our daughter was diagnosed almost two years ago!
Andrea