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Thankful for you. Please, let’s keep it up.
On Sunday night, November 11th, the Neuromuscular Disease Foundation hosted its most successful event to date. The Gala for the Arts was a sold out evening that brought together exquisite art and beautiful music. It was an opportunity to celebrate honorary members of the GNE Myopathy community along with the exciting $2.5 million matching grant the NDF recently received from an anonymous charitable foundation.
I am absolutely thrilled to share that with over 450 attendees, and many viewers through our live-stream, we were able to raise just over $1 Million towards our goal, making for a total of $1.7M raised so far all year through grants, sponsorships, donations and pledges! This means we are only $800k away from our goal that will allow us to start funding gene therapy trials!
At the gala, I had the honor of presenting the “Philanthropy Award” to David Dahl who was the individual responsible for steering the NDF towards this incredible, rare and highly competitive grant opportunity. In my remarks, I shared how the NDF has evolved from a small grass roots effort that began in my mother’s living room into an international organization with representation in 23 countries around the globe. Quite honestly, that fact still blows my mind. And yet, it’s simply an example of what one community can do with enough passion, dedication and hope.
I personally want to thank all of my dear friends and family members who have been able to show up in all the ways that mean so much to me- physically, financially and emotionally.
We are almost there, but we still need your help. If you have already donated, I am so grateful for your generosity. If you could spread the word to people or organizations who you think may be interested in making a meaningful, tax-deductible donation to the NDF, it would be so appreciated.
I recognize that our world needs so much from all of us right now. On behalf of GNE Myopathy patients around the globe, we are truly grateful for any contribution you would consider making.
Thank you for helping us take these next steps towards our future…
Much love and gratitude,
Jen