Rare Disease Report

Global Genes Announces the 2016 RARE Impact Grant Winners

MAY 26, 2016
James Radke, PhD
Global Genes has announced the winners of the 2016 RARE Impact Grant Program.  A total of 137 grant applications were reviewed and $100,000 will be given to the winning 18 nonprofit organizations.
Funds for this program stemmed from the international Denim Dash, a weeklong virtual event held in March.
For those interested in next year’s awards, Global Genes will accept grant applications for 2017 awards between July 15, 2016 and September 15, 2016. Click here to learn about the 2017 awards.

The 2916 winners are:

1p36 Deletion Support & Awareness.
The money will be used to help fund their annual conference that brings together parents and loved ones of those with ultra-rare 1p36 Deletion Syndrome.
For more information:  www.1p36dsa.org/
ADCY5 Mutation
Grant funding will support development of an interactive and educational coloring book for elementary school children.
For more information: www.ADCY5.org
A Foundation Building Strength
The funds will be used to provide scholarships for families to attend the Nemaline Myopathy family conference.
For more information: www.buildingstrength.org
Alternating Hemiplegia of Childhood
Funds will be used to support the foundation’s biennial family to allow families who cannot attend an opportunity to obtain relevant content.
For more information: www.ahckids.org
CADASIL Association
The association will develop educational print materials for patients, caregivers and physicians to increase awareness of the cureCADASIL Family Registry.
For more information: www.curecadasil.org
Children’s Interstitial and Diffuse Lung Disease Foundation (chILD Foundation)
Grant support will help fund Regional Education Days in an effort to fulfill the chILD Foundation’s 2016 objective to increase and strengthen community engagement.
For more information: www.child-foundation.com
Friedreich’s Ataxia Research Alliance (FARA)
FARA will expand its Ataxian Athlete Initiative (AAI), which funds the purchase of adaptive cycling equipment for people with Ataxia who want to stay active, despite their disease.
 For more information: curefa.org
Helping Hands for GAND, Inc. (GATAD2B-associated neurodevelopment disorder)  
This grant will support the first GAND Family Gathering in the U.S.
For more information: www.gatad2b.org
Histiocytosis Association, Inc.
Money will be used to host three regional meetings where Histio families and patients will learn from each other’s experiences, share stories, celebrate triumphs and connect to resources and research.
For more information: www.histio.org
This grant will fund the creation of an ebook that will educate parents and caregivers of just diagnosed infants with sickle cell disease.
For more information: www.Hopeforscd.org
International FOXG1 Foundation
Funds will be used to expand their FOXG1 Equipment Lending Library which provides adaptive equipment to families with a child or children diagnosed with FOXG1 Syndrome.
For more information: www.foxg1.com
International WAGR Syndrome Association
Grant support will allow families to attend the Association’s annual patient meeting (WAGR Weekend).
For more information: www.wagr.org
LHON Project at UMDF
Grant support will create the Leber’s Hereditary Optic Neuropathy (LHON) Genealogy Project, designed to help families with a LHON genetic mutation identify and educate extended maternal relatives about this condition and the important goals of this project.
For more information: www.LHON.org
Moebius Syndrome Foundation
The Foundation will be using Grant support to educate the community about and offer Oral Placement Therapy at the Moebius Syndrome Foundation Conference.
For more information: www.moebiussyndrome.org
National PKU News
Grant support will expand the online diet-management tool, HowMuchPhe.org, to assist families of children with Phenylketonuria (PKU).
For more information: www.howmuchphe.org
NGLY1 Foundation
This grant will support 40 families to attend the Congenital Disorders of Glycosylation (CDGs) Family Conference.
For more information: www.pachyonychia.org
Usher Syndrome Coalition
Money will be used to create a scholarship program that will allow patient advocates to attend the 8th Annual Usher Syndrome Family Conference.
For more information: www.usher-syndrome.org

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