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December 21, 2021
PA Rare Disease Leader Profile: Joe Coyne of Garrett the Grand – Batten Fighter
This is the sixth in a series of profiles of the leaders of rare disease organizations based in Pennsylvania.
- Full Name: Joe Coyne
- Current Hometown: Gilbertsville, PA
- Organization’s Name: Garrett the Grand – Batten Fighter
- Mission of the Organization: Create awareness, fund trials and research for Batten Disease, help future health care providers with a scholarship and give opportunities through a wellness running program.
- Rare Disease(s) Covered by the Organization: Batten Disease (Primarily Type 1/CLN1).
- Your Role at the Organization: Founder and Executive Director
- How You Got Involved with the Organization: My son was diagnosed with Batten disease/CLN1 in 2014.
- What You Are Most Proud of or What You Are Excited About Doing Next: I am most proud about helping to create the PA Rare Disease Advisory Council. And it is always exciting to have fundraisers to raise funds to support research.
- What You Find Most Rewarding in Your Role: It is rewarding to teach others about rare disease, specifically Batten disease.
- What You Find Most Challenging in Your Role: It is so challenging that we are unable to find a cure or treatment for CLN1. Money is a huge obstacle and medical progress is very slow.
- Resources You Recommend to Other Rare Disease Advocates: Rare Disease Legislative Advocates is a good group to advocate on Capitol Hill but getting involved with your local elected officials can be even more helpful.
- Any Advice You’d Like to Share with the Rare Disease Community in PA: Keep pushing forward!