• Sunday, 21 July 2019

Rare Disease Foundation Announces Take Action Platform


Sep 14, 2018 (10 months ago) |
SAN FRANCISCO: When Ann Marie Jennison's son Charlie had his 14th birthday party, he had one request: in lieu of gifts he wanted donations to help fight NGLY1 Deficiency, the rare genetic disorder afflicting both him and his sister, Jane.
Over $1,200 in donations ended up being made to the Grace Science Foundation (GSF), whose mission is to cure NGLY1 Deficiency. It was from countless private fundraising efforts like Charlie's that the idea for GSF's newly launched "Take Action" page was sparked.

"We kept seeing numerous instances of NGLY1 advocates organizing private fundraising efforts and realized that a synchronized effort would go much further," commented Matt Wilsey, who co-founded GSF after his daughter Grace was diagnosed with NGLY1 Deficiency.

A formal campaign platform supports all types of fundraising efforts, such as the one run by Sara and Matt Carter this summer. Sara's son Mason has NGLY1 Deficiency. With the disease impeding Mason's ability to enjoy certain outdoor activities, the Carters know all too well the importance of supporting their local community. Their coastal adventure tourism and equipment rental business, Quest Adventures, in Lewes, Delaware, offers a special beach access wheelchair at no cost to anyone who needs it. All they recommend in return is a donation to GSF, a request that has so far garnered hundreds of dollars for the foundation.

"People are so thankful for the generosity in using the chair at no cost, and are excited to pay it forward and help other kids with NGLY1, like Mason," remarked Sara Carter.

NGLY1 Deficiency is a genetic disorder that affects many body systems, causing seizures, delayed development and liver dysfunction. The disorder is rare, with only 49 known living patients. The GSF "Take Action" page gives participants the option to organize events and establish their own fundraising page. Unlike popular fundraising platforms, such as GoFundMe, GSF doesn't deduct a processing fee, and all of the proceeds go directly to the cause.

The Grace Science Foundation is a not-for-profit organization, whose mission is to cure NGLY1 Deficiency by pioneering approaches to scientific discovery that are faster, less expensive and more collaborative. For more information, visit the Grace Science Foundation Take Action page.

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Rare Disease Foundation Announces Take Action Platform

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