• NGLY1 in The New Yorker!

    Open science and social media were key in the discovery and growth of the NGLY1 rare disease community. Article by Seth Mnookin.

  • NGLY1 Deficiency Research

    In June 2012, the Freeze Lab pioneered research into the clinical treatment of the rare disorder, N-glycanase deficiency.

  • NGLY1 Families Connect

    On February 28, 2014, researchers and 5 NGLY1 families from across the world met for the first ever symposium on N-glycanase deficiency.

Showing posts with label fundraising. Show all posts
Showing posts with label fundraising. Show all posts

Monday, July 21, 2014

Benefit for Jordan & Jessie


The following is a fundraiser to improve the quality of life for one of our beautiful NGLY1 families by helping them purchase a handicap accessible van capable of transporting both of their daughters.

If anyone is interested in simply donating directly to this family, please let us know.  Thank you!
Everyday life for The Stinchcomb's is tough. Both girls who suffer from NGLY1 do not speak, they can not walk, they wear diapers, drink formula, use wheelchairs, and need constant attention. Tony and Pam provide all of this to their girls WITHOUT ANY OUTSIDE HELP. They see that the girls' needs are met to the best of their ability. Traveling, even to the grocery store, is nearly impossible, even with their Suburban. The one single thing that could change the quality of life for this family would be handicap accessible transportation. That is our goal with this fundraiser. Helping them achieve mobility so their family can function more like an every day family!  
This family is near and dear to our hearts so I wanted to do something special for them. You can help by placing an order online anytime between now and August 15th and I will donate 25% to the Stinchcomb Family! This is a great opportunity to help this sweet family, and also get a gift for someone special (or yourself)! Don't forget Christmas, Birthdays, Teachers and special occasions! 
Order at: 
http://www.heatherm.origamiowl.com/parties/StinchcombFundraiser405289/collections.ashx

Friday, June 13, 2014

Grace Wilsey Foundation


The Wilsey family just launched the Grace Wilsey Foundation to fund NGLY1 research and, more broadly, change the way rare diseases are researched.  Kuddos, Matt and Kristen!