Kaitlin MacArthur, one of the 1p36 parents in our support group, has spent some long hours to establish the 1p36 Deletion Syndrome Fund. It's a new government certified non-profit organization that is dedicated to raising awareness and improving treatment for individuals with 1p36 Deletion Syndrome. Kate has recently begun distributing packets that can be used to raise funds in your area.Funds being gathered right now will be used in part to pay for facilities and materials at the annual 1p36 Deletion Conference in Boston in September. The conference will be a great opportunity to meet with doctors and other care givers and learn what we can all do help our loved ones who are affected by this genetic condition.
The fund has no administrative overhead due to the fact that it is run by volunteers whose families are affected by 1p36 Deletion Syndrome. That means every penny donated goes to help 1p36 patients.
If you would like to make a tax deductible donation to the 1p36 Deletion Syndrome Fund or would like an information packet so you could assist in raising funds, please send me an email at nate (dot) hanson (at) gmail (dot) com. I'll get you all the specifics you need to make a contribution or assist the fund in collecting contributions in your area. And thank you in advance for your help in spreading the word about this syndrome and helping those being treated for it.
2 comments:
Hey Nate & Melanie it sounds like whitney is doing great and a new school will bring so many new adventures. I am very excited to say that Taylor is starting kindergaten in the fall. I think she will be alot more stimulated there. She is doing so good and has made huge progress this past winter. I have posted a couple of videos of her on our family blog. Feel free to check them out they are cute. alwaysachucklewiththree.blogspot.com
We would love to come visit this summer when we come down for more apointments. I know Taylor would love to see whitney again.
Hi Jenny! We'd love to see you guys when you're down in August. Melanie will email and we'll see when we can get together. Maybe we can invite a few of the other families we have close by and have a 1p36 play date.
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