$100,000 to Fund Rare Disease Research, Including FA, from Global Genes Advocacy Group

Margarida Azevedo, MSc avatar

by Margarida Azevedo, MSc |

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staring, Global Genes funds rare disease research

Global Genes, a leading rare genetic disease advocacy organization, has just announced the winners of its inaugural RARE Patient Impact Grant Program, an initiative first launched at the 2015 Rare Tribute to Champions of Hope. Included in the awardees is the Friedreich’s ataxia leading advocacy organization, Friedreich’s Ataxia Research Alliance (FARA).

The RARE Program will direct $100,000 in financial support to a series of rare disease foundations and patient advocacy groups providing care and resources to rare disease patients and their caregivers.

Global Genes estimates that rare diseases collectively affect 30 million Americans and 350 million people worldwide, half of which might be children. That accounts for an astounding 10 percent of the entire human population.

Global Genes Founder and CEO Nicole Boice is a champion of the RARE Program: “We are excited to make these first awards for an underserved community, and are dedicated to growing the grant program, including increasing the funding available to meet the needs of grant recipients each year.”

Here are some of the 2016 RARE Patient Impact Grant Program winners:

  • Friedreich’s Ataxia Research Alliance (FARA) – a nonprofit organization dedicated to finding a cure for Friedreich’s ataxia. FARA will use the grant to expand its Ataxian Athlete Initiative (AAI), which funds the purchase of adaptive cycling equipment for people with FA who wish to remain active, despite their condition. More than three-quarters of past AAI recipients have used their equipment to enhance personal strength and to improve their quality of life, as well as to participate in fundraising cycling events.
  • NGLY1 Foundation – a patient support organization helping those with N-glycanase deficiency (NGLY1), a congenital disorder of glycosylation (CDG). The project will support 40 families with children living with the condition and allow them to attend the Congenital Disorders of Glycosylation (CDGs) Family Conference. These families will have access to 16 experts from across the country and hear about the latest research advancements, as well as have the opportunity to connect with the ultra-small community of only 150 diagnosed patients in the country.
  • Usher Syndrome Coalition – an organization raising awareness and accelerating research for the most common genetic cause of combined deafness and blindness, known as Usher syndrome. The awarded project will create a scholarship program to enable patient advocates to attend the 8th Annual Usher Syndrome Family Conference. The conference will offer participants access to critical information they wouldn’t otherwise be able to access, including a greater awareness of current research developments.
  • For others, follow this link.

Global Genes’ Director of Patient Advocacy Amanda Knitter was one of the members who reviewed the 137 grant applications.

“I’m extremely excited that we were able to distribute to such a worthy recipient base, but we need to do more,” she said in a press release. “If Global Genes could grant all of these requests, we would have been able to help rare foundations serve 1.1 million patients and caregivers.”

And Global Genes is on its way to do more. The funds for these grants were raised through the organization’s international Denim Dash, a weeklong virtual event called “Virtual Denim Dash 5k” that held March 19-27. The idea is to repeat the fundraising event next year, and 2017 awards are already being planned. Global Genes will accept applications between July 15 and Sept. 15, 2016.

For more information on the application process, follow this link.