Community Ambassadors Making An Impact at Rare Disease Day

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On Thursday, February 28, we had the privilege of hosting our annual Rare Disease Day Luncheon at the Omni Parker House in Boston.

This year, our event’s focus was to highlight our rapidly growing Jett Foundation Community Ambassador program and all the work each volunteer ambassador has put in this year in support of our work and our community. We wanted to provide an opportunity to bridge the gap and personally introduce our industry partners to the parents, grandparents, and siblings who serve as liaisons for Jett Foundation and advocates for the Duchenne muscular dystrophy community.

Ten of our amazing community ambassadors were able to join us for a panel and luncheon to share their stories. Our brave panel of ambassadors included Jillian Moore, Perlita Hains, and Laura McRitchie who spoke of their experiences with clinical trials, struggles post-diagnosis, and the burden as a mother and caregiver to a child with Duchenne.

Perlita Hains shared her story of watching her son, Levi, completely lose his mobility a year ago. Levi, 12 years old, is in the transitional stage of the disease and has recently lost his ability to walk. Perlita described the torment of watching her 12 year old son lose his ability to walk and how it has fueled her passion for advocacy. She summed up her motivation saying, “If not now, when? If not us, who?”

If not now, when? If not us, who?
— Perlita Hains, Levi's mom

Difficult stories like Perlita’s provided those of us in the room with the reality of what it’s like caring for a young man with Duchenne. These unique anecdotes put the gravity of the situation into perspective.

After the panel’s presentation, the luncheon broke into a roundtable discussion with conversations exploring the families’ role in educating their child’s peers about their disease, the discrepancy of the cost/quality of care from state to state, and the importance of teaching principles of empathy at a young age.

We would like to thank all our attendees, and especially our Community Ambassadors for making Rare Disease Day a truly impactful experience. Jillian Moore, Diana Johnson, Amanda Guth, Emily Houston, Perlita Hains, Laura McRitchie, Blake Barkoskie, Staci DiRocco, Mari Sanders, and Karen Stahler: thank you for spending the day with us and for all you do in our community!