News

In a time for giving, one voice politely asks for support

This letter comes from a Hoboken resident who wished to convey this message to the community but due to the family sensitivity asked to do so anonymously:

I am writing to you today to tell a bit about CADASIL.

What is CADASIL? Great question. Most people never hear of it unless someone in their family is diagnosed with this rare disease.  I am reaching out to you today because someone in my immediate family has recently been diagnosed with this rare genetic disease.

CADASIL is an autosomal dominant gene that causes strokes and cognitive disabilities at a young age. This means – if a parent is affected there is a 50% chance of each child being affected and onset of symptoms is usually from 35-50. Currently there is no treatment, no cure, and really no funding to look for one.  But….we can change that!

There are a handful of very dedicated researchers working on CADASIL with the help of some private funding and funds from the United Leukodystrophy Foundation. WE NEED YOUR HELP TOO! If we can raise $50,000 it would be possible to fund the first attempt at drug discovery for CADASIL!

Please consider making a donation online.  The webpage form will ask for the occasion of your gift or comment here:  It is very important that your enter CADASIL research grant in the box so the money will be placed in an endowment specifically for research.

http://www.ulf.org/givingopportunites.html

If you would rather mail your donation, please make checks payable to:
United Leukodystrophy Foundation (write CADASIL research grant on memo line)
2304 Highland Dr., Sycamore, IL 60178

The ULF is a tax-exempt 501[C] [3] charity.
Tax I.D. #35-1557361
Phone (800) 728-5483

I know there are many groups and charities vying for your donations (especially this time of year) I hope you consider what an impact even a small donation will have on the future of these young people affected with CADASIL. Please take a moment to pass this email along to your friends or family, Church groups, school groups, alumni groups…the more the merrier.  Just think, with one small gesture, hopefully one day you’ll be able to say that you helped find a treatment for CADASIL.  Very powerful!

 Thank you for taking the time to learn about CADASIL and any consideration to making a donation. For additional information, please visit:

http://www.ulf.org/types/Cadasil.html

I sincerely appreciate any and all contributions to help us reach the goal!

Leave a Reply