Resources for Social, Education, & Advocacy Support
- Muscular Dystrophy Association – MDA is a national organization and #1 voluntary health organization in the United States for people living with muscular dystrophy, ALS, and over 300 other neuromuscular conditions. For 75 years, MDA has led the way in accelerating research, advancing care, and advocating support and inclusion of families living with neuromuscular disease.
- Best Day Ever Foundation is an Indiana-based organization that hosts a monthly education and social program – “Living Our BEST Lives With Duchenne”. They help families live their lives to the fullest, and also have a wide range of additional resources on their website.
- The Jett Foundation offers assistance for families with Duchenne. Their programs include: Family Workshops and Community Webinar Series, Jett Giving Fund, virtual Porch Nite support groups, Camp Promise for teens and adults, and more.
- PJ’s Protocol – a resource for families to save and share with medical professionals, along with many education, research, and advocacy resources.
- Indiana Family to Family provides information, training, and one-on-one support to Hoosier families of children and youth with diverse health and mental health needs, and the professionals who serve them. Indiana Family to Family wants to be your trusted health and education information center. Have questions about Medicaid and Waiver? Contact them via their website or by reaching out to info@inf2f.org or 844-323-4636.
- US Power Soccer Association and American Powerchair Football Confederation – Power soccer, also known as powerchair football, is an exciting and inclusive sport specifically designed for individuals who use power wheelchairs. Power soccer is a team sport played on a regulation-sized basketball court. Players maneuver their power wheelchairs equipped with specialized footguards to pass, dribble, and shoot an oversized soccer ball. No matter what skill level you may, visit the website to learn more and find a team for you!