Join Today & Get 4% Cash Back Then 6, 7...Up to 10% Off Reorders!

May 6, 2009, 6:51 pm
Flag as Inappropriate picodoll  

We have a very close family friend who is afflicted with this rare genetic disorder. I won't go into the details here because that is easy enough to look up on the internet. My purpose for bringing it up is to ask where a person who wants to make a contribution to research on this would go. It is easy to make a donation for heart disease research or cancer research. What about a rare genetic disorder?

You could try the March of Dimes as they support this type of research or there is the National Organization for Rare Disorders that can be found at http://www.rarediseases.org/. I support the March of Dimes myself but I'm not sure how much funding would go towards that type of rare disease research.

Thanks that's a start. If anyone else finds anything please let me know here. I will continue to research this myself. It is sad to see someone you love slowly wasting away and not really being able to do anything about it.

How sad to see a degenerative disease claim a person. I am sorry about your friend. Maybe right now, you could just help him if he needs it? Not every disease has a foundation that does research but I do agree with Jackie about the March Of Dimes. I will be remembering you and your friend. God Bless.

March of Dimes is always a good start and I know they help many with the work they do. I am sure you can use google to help find places that will work with what you are looking for. I would help more but its hard to lead when I am not sure what we are looking for.

I know your post is old, but I wanted to tell you about a group at Washington University in St. Louis who are researching and support Wolfram patients. They are trying to bring in as many kids with Wolfram as possible to a clinic especially for Wolfram in August 2010. The kids will see all kinds of specialists and they are planning support group for the families. They will be testing potential drugs on cells from blood samples, and it could lead to treatments in the future - not only for Wolfram but possibly other conditions like diabetes or other neuro-degenerative disorders. I hope this helps:

http://wolframsyndrome.dom.wustl.edu

I know your post is old, but I wanted to tell you about a group at Washington University in St. Louis who are researching and support Wolfram patients. They are trying to bring in as many kids with Wolfram as possible to a clinic especially for Wolfram in August 2010. They are seeing all kinds of specialists (endo, ophth, ENT, neurology, MRI) and I think the families get to meet each other for support, too. They will be testing potential drugs on cells from blood samples. It could lead to treatments in the future, not only for Wolfram but possibly other conditions like diabetes or other neurodegenerative disorders. I hope this helps:

http://wolframsyndrome.dom.wustl.edu