Dream of Accessible Transportation Comes True for New Jersey Family Living with Duchenne

July 8, 2024

Ever since Josvin Valdez-Ramirez was diagnosed with Duchenne muscular dystrophy at a young age, his family has faced many challenges and interruptions in their daily routine. One challenge that felt impossible to overcome was finding a way to travel with Josvin to school, medical appointments, and family outings without risking his safety or that of his parents.

Hope for an accessible mode of transportation felt lost after years of facing a financial barrier when attempting to buy a van. “Josvin has fallen before and it is impossible for me to pick him back up to get into the car,” says his mother, Glendi. “Sometimes, there are people who can help me, but to rely on others is not safe either. We have spent so long not leaving the house because we are afraid for his safety.”

Thanks to the guidance of their community and Josvin’s school, the Valdez-Ramirez family was directed to Jett Foundation’s Jett Giving Fund application. As participants in this year’s Accessible Vehicle Fund, the family fundraised half the cost of their vehicle before Jett Foundation stepped in to cover remaining costs and purchase the van for delivery day.

Contributing a generous amount to the family’s goal was The Robert E & Marie Orr Smith Foundation. “We were thrilled to support the Valdez family when Josvin’s special education teacher reached out and shared their story,” says Bob Orr, Trustee. “We look forward to seeing the many adventures the family will take now that they have safe transportation.”

June 23, 2024 was like no other for the Valdez-Ramirez family, who were joined by family and many members of their community to celebrate the arrival of a safe van. “With this van, we feel a new sense of freedom,” shares Glendi. “While being able to safely attend medical appointments and surgery for Josvin, we can now explore areas outside of the home such as movie theaters, parks, vacations and more.”

In addition to the excitement of reaching their fundraising goal, the family claims a sense of joy in spreading awareness for Duchenne throughout this Jett Giving Fund journey. “Meeting your goal takes a lot of hard work,” they share. “But families should remember they are spreading a positive message. The Duchenne community is strong, powerful, and full of love.”

The Jett Giving Fund program has helped transform the lives of countless families across the country since its inaugural cycle in 2017, gifting over $4.5 million worth of accessible equipment, small medical equipment, and emergency assistance thanks to the generous support of individual donors, local communities, and major sponsors including The Robert E & Marie Orr Smith Foundation, Cure Dale’s Duchenne, Finn’s Friends, the Flatley Foundation, the Killian Family, Catalyst Pharmaceuticals, Kindness Over Muscular Dystrophy, Michael’s Cause, Ryan’s Quest, PJ’s Protocol, and Sarepta Therapeutics.

To assist families impacted by Duchenne through the Accessible Vehicle Fund, Emergency Fund, and Equipment Assistance Fund, you can donate today or reach out to Maura Carroll, Director of Development, at [email protected] to learn more about sponsorship opportunities.

If you or someone you know is in need of support or would like more information on our Jett Giving Fund, please visit www.jettfoundation.org/giving-fund.

Experience the magic this summer!

How is the rare disease community accomplishing goals?

Tune in on February 29 to hear from our panel and moderators on how they are accomplishing goals and living life to the fullest!

Your gift helps Jett Foundation provide programming and opportunities, such as Camp Promise, to many families impacted by Duchenne muscular dystrophy each year.

Accessible Vehicle Fund Applications Open