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.

  1. Full Name: Joe Coyne
  1. Current Hometown: Gilbertsville, PA
  1. Organization’s Name: Garrett the Grand – Batten Fighter
  1. 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.
  1. Rare Disease(s) Covered by the Organization: Batten Disease (Primarily Type 1/CLN1).
  1. Your Role at the Organization: Founder and Executive Director
  1. How You Got Involved with the Organization: My son was diagnosed with Batten disease/CLN1 in 2014.
  1. 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.
  1. What You Find Most Rewarding in Your Role: It is rewarding to teach others about rare disease, specifically Batten disease. 
  1. 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.  
  1. 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. 
  1. Any Advice You’d Like to Share with the Rare Disease Community in PA: Keep pushing forward!
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