CureDuchenne Cares had its inaugural visit to San Juan, Puerto Rico, on June 10 for a workshop on current standards of care for Duchenne, research and clinical trials, family support, including socio-emotional well-being and caregiver assistance, and physical therapy and medical equipment. A total of 30 individuals attended the workshop and were thankful for CureDuchenne being there as there aren’t as many resources for Duchenne families in Puerto Rico as there are in the US.
“The CureDuchenne workshop was spectacular. All the moms were delighted, and we hope you come back soon,” said attendee Maria Colon, who has a three-year-old boy with Duchenne. “The most important thing about your visit is to let us know that we can be involved in all things Duchenne in the United States.”
CureDuchenne partnered with The Akari Foundation to provide translation services for everyone in attendance. This partnership, like the recent partnership to translate CureDuchenne Link into Spanish, aligns with The Akari Foundation’s mission to help educate the Hispanic community on rare diseases with a focus on Duchenne.
CureDuchenne Physical Therapist Doug Levine also attended the workshop and provided live demonstrations on the best types of stretches for those with Duchenne. He also outlined the best medical equipment options for individuals with Duchenne.
This was the first time CureDuchenne has traveled to Puerto Rico, helping fill an unmet need for families there. Wilfredo Hernandez Rivera and Griselle Mendez, whose son Alejandro, 19, has Duchenne, lived in Puerto Rico before moving to Atlanta to be closer to a clinical trial and receive better medical care for Alejandro.
“Nobody knows about Duchenne,” Griselle said. “And if you don’t have a doctor with that kind of expertise, it’s hard to as a parent to make a decision.”
That is the purpose of these workshops — whether in San Juan, Boise, Seattle, Dehli, or Budapest. It’s to give parents the information they need to make the right decision for their child.
And we’ll do our best to advance that mission wherever we go. CureDuchenne has visited nine cities to host workshops this year and there are three more to go —Toronto on June 24, Salt Lake City on Aug. 19, and Milwaukee on Sept. 9. Registration is still open for all. We hope to see you there! View all upcoming events