Today was all about ensuring that boys and adults with Duchenne receive the best care possible and helping everyone overcome the challenges face each day. Keynote speakers kicked off the day with inspiring words about the beauty in the struggle of living with Duchenne. The conference wrapped with a time for celebration as CureDuchenne hosted a summer camp-themed party for individuals with Duchenne, parents, caregivers, and anyone tied to the cause.
1. Along El Camino de Santiago
“Shared adventure is what makes a brighter future possible,” said keynote speakers Patrick Gray and Justin Skeesuck, who returned this year to tell us about their latest journey on the historic road in Spain. Skeesuck, who uses a wheelchair, was pushed by his friend Gray along the 500-mile, treacherous path in 2014. They have since made a documentary about it and inspired other people to overcome their own obstacles. In their latest trip to Spain, they took a young man with Duchenne with them, tying their mission back to CureDuchenne’s cause.
2. Duchenne experts move care forward
Physicians, physical therapists, pediatricians, and other Duchenne specialists spoke about the most up-to-date care guidelines and the newest Duchenne research that can help improve the quality of life for all people with Duchenne.
3. All ages accounted for
Duchenne impacts the individual differently depending on their age, and that’s why CureDuchenne gathered experts with experience caring for infants, adults, and everyone in between. Sessions were broken up for patients and caregivers ages 0-8, 9-16, 17 and older, and 18 and older.
4. Exon goes camping
The theme for Saturday night’s celebration was Camp FUTURES, featuring fun camp-related activities, themed cocktails and mocktails, and time to socialize with other Duchenne families.
Check out our Facebook photo album HERE.