Parent Project Muscular Dystrophy (PPMD) is the largest nonprofit organization in the United States focused entirely on Duchenne Muscular Dystrophy. Founded in 1994 by Pat Furlong, PPMD has improved the treatment, quality of life, and long-term outlook for all individuals affected by Duchenne through research, advocacy, education, and compassion. Because of Pat and her team of very proactive and hopeful parents, families affected by Duchenne have better access to state-of-the-art care information, research is moving forward at an accelerated pace, and legislation now exists funding Duchenne research and outreach programs. It was a wonderful experience meeting Pat and her team at the annual PPMD seminar in Atlanta, Georgia. We realized we are not alone in our journey and together we can make a difference!
To learn more, please visit the Parent Project Muscular Dystrophy website:
PPMD Website
PPMD YouTube Video
To learn more, please visit the Parent Project Muscular Dystrophy website:
PPMD Website
PPMD YouTube Video
The Muscular Dystrophy Association (MDA) was founded in 1950 as a voluntary national health agency aimed at conquering neuromuscular diseases. MDA has more than 200 offices nationwide. The local MDA clinic is held at MetroHealth Medical Center. Here, RJ receives local care from Dr. Irwin Jacobs and a team of doctors experienced in dealing with neuromuscular diseases. Additionally, the local MDA office in Cleveland offers monthly support group meetings for families. Throughout the year MDA is busy sponsoring family activities, fundraising events like the Shamrocks, Muscle Walk, Fill-the-Boot for the Labor Day Telethon and a week long summer youth camp at Camp Cheerful in Strongsville, Ohio. We feel blessed to be connected with such a caring and compassionate group of people. Thank you Jackie Simcic-Becker and all the staff at MDA of Cleveland! We appreciate everything you do for all the families affected by neuromuscular diseases.
To learn more, please visit the Muscular Dystrophy Association (MDA) website:
MDA Website
To learn more, please visit the Muscular Dystrophy Association (MDA) website:
MDA Website
The Comprehensive Neuromuscular Center at Cincinnati Children’s is dedicated to helping children and adolescents with neuromuscular disorders live better, fuller lives. Our experience is second to none. RJ visits Cincinnati Children's Hospital Medical Center twice a year. Under the direction of Dr. Brenda Wong, the Neuromuscular Center uses an interdisciplinary approach to diagnosis and treat RJ. Dr. Wong and Dr. Rybalsky conduct research into the most advanced and most effective treatment options for RJ so he can live as fully as possible with his DMD. They care for more than 1,100 children from all over the world with a range of neuromuscular disorders. We fell blessed to have such tremendous care so close to home for RJ.
To learn more, please visit the Cincinnati Children's Hospital Medical Center website:
CCHMC website
To learn more, please visit the Cincinnati Children's Hospital Medical Center website:
CCHMC website
The Achievement Centers for Children is a nonprofit agency, founded in 1940, which helps children with a wide range of disabilities develop the skills they need to realize their full potential. RJ receives physical therapy sessions to help maintain his range of motion, strength, balance, and mobility skills. RJ’s physical therapist (Josh Palcic) designed and taught us a series of exercises we perform at home with RJ on a daily basis. RJ also takes swimming lessons with Sandy Howlett. Sandy enjoys helping RJ get more comfortable in the pool and teaching him how to swim!! Thanks Josh and Sandy for all your hard work and enthusiasm!
A big shout out to Amanda Haddad, another PT for her endless dedication to teaching RJ how to ride bike! RJ is very happy and proud of his new skill. We can honestly say that if it weren't for Amanda, RJ would not be riding a bike!
To learn more, please visit the Achievement Centers for Children website:
Achievement Centers for Children Website
A big shout out to Amanda Haddad, another PT for her endless dedication to teaching RJ how to ride bike! RJ is very happy and proud of his new skill. We can honestly say that if it weren't for Amanda, RJ would not be riding a bike!
To learn more, please visit the Achievement Centers for Children website:
Achievement Centers for Children Website
Youth Challenge (YC) brings together children with physical disabilities and youth volunteers who enrich each other's lives through one-on-one participation in adapted sports and recreational activities. Over 70+ children, ages 4-18, with physical impairments, such as cerebral palsy, spina bifida, muscular dystrophy and a variety of other disabilities are paired with volunteers. More than 400 volunteers teens, ages 12-18, are trained seasonally by professionals and peers to work with children with physical disabilities. YC offers over 300 activities year-round with adaptive sports and recreational equipment and adjustments to suit each child's interests. RJ's sister, Shannon, has been a volunteer for the past three years and RJ has been involved in art, soccer, swimming, golf, basketball, archery, and skiing at YC. We are blessed to have such an awesome place in our community. Thank you Mary Sue!
Youth Challenge Website
Youth Challenge Website
