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Garrett the Grand - Batten Fighter
Started by: Kerry Bonner
The nonprofit based in Montgomery County, PA was born out of the devastating news that 4 year old Garrett Coyne was fatally diagnosed with Batten Disease. Garrett is now 7 years old. Batten Disease currently has no treatment, no cure, and is not preventable. Batten Disease is one of approximately 7,000 rare diseases that affect 30 million people living in the United States. Garrett and his family deal with many disabling challenges on a daily basis. Due to Garretts disease and its deteriorating effects he is now unable to walk independently, is blind and has many other health issues.
Despite these hardships his family have raised funds to help progress research in the hope that one day other families are not faced with these devastating circumstances. Most notable is the recent announcement that a research program they supported recently received Orphan Drug status(a). They are also incredible champions for other rare disease families and Garrett's parents participate in lobbying work at the local, state and federal level. Garrett's Dad Joe was is a member of the recently formed Pennsylvania Rare Disease Advisory Council inspired by Garrett(b).
Inspired by their own journey with Garrett's progressive disabilities Garrett the Grand Wellness has evolved. With a team of four running chairs (free to be used by the community) they are encouraging other families with disabled members to be active outdoors. Both of Garrett's parents; Joe and Nancy regularly compete in local races as well as larger events such as the Philadelphia Marathon with Garrett and brother Palmer along for the ride(c).
If you have read all the way to here - thank you! Your donation however bigger or small will not be wasted as this brave family continues to impact many people through their continuing story and actions.
To find out more please visit battenfighter.com or find us on fb @garrettthegrand (a) http://investors.abeonatherapeutics.com/phoenix.zhtml?c=63510&p=irol-newsArticle&ID=2331838 (b) https://battendiseasenews.com/2017/07/11/batten-disease-patient-inspired-pennsylvania-rare-disease-advisory-council/ (c) http://www.readingeagle.com/news/article/new-hanover-township-boy-battling-rare-disease