We strive to make every step possible for children with movement challenges, creating hope that lasts a lifetime.
Support Network
Our mission is to offer hope, support, and practical solutions to those facing the daily challenges of living with neuromuscular disorders.
SMA & DMD Support Network is a non-profit organization committed to improving the lives of children affected by Spinal Muscular Atrophy (SMA) and Duchenne Muscular Dystrophy (DMD). We provide families with access to essential medical care, physical therapy, and life-changing treatments.
Our mission is to offer hope, support, and practical solutions to those facing the daily challenges of living with neuromuscular disorders. We work closely with medical professionals, caregivers, and other organizations to ensure that each child receives the care they need — from diagnosis to treatment and beyond.
Through our programs, we help families cover the costs of therapy, assist with medical equipment, support surgical procedures, and guide them through the complex treatment landscape, including access to gene therapy and innovative medications. Every step we take is rooted in compassion, collaboration, and a belief in a better future for all children with SMA and DMD.
Zolgensma is a one-time gene therapy designed to replace the missing or defective SMN1 gene responsible for SMA. It is administered via intravenous infusion and is most effective when given early in life.
Risdiplam is an oral medication taken daily in liquid form. It helps increase the production of SMN protein and is suitable for both infants and adults living with SMA.
Spinraza is an injectable treatment administered into the spinal fluid through lumbar puncture. It helps boost the production of functional SMN protein and requires ongoing dosing.
Elevidys is a one-time gene therapy approved for treating Duchenne Muscular Dystrophy (DMD). It works by delivering a functional version of the dystrophin gene to help strengthen muscles and slow disease progression.
Spinal Muscular Atrophy (SMA) is a rare genetic disorder that affects motor neurons in the spinal cord, leading to progressive muscle weakness and atrophy. It primarily impacts infants and young children, making early diagnosis and treatment vital.
Yes. SMA can now be treated with advanced therapies such as Zolgensma, Spinraza, and Risdiplam. These treatments help slow disease progression, improve muscle function, and enhance quality of life — especially when started early.
SMA is usually diagnosed through genetic testing, which can detect mutations in the SMN1 gene. Early symptoms such as muscle weakness, difficulty swallowing, and delayed motor milestones may prompt further evaluation.
With early diagnosis and access to modern treatments, many children with SMA can achieve improved mobility, better breathing, and longer life expectancy. While challenges remain, supportive care and therapies can help them lead more active and fulfilling lives.
With a small touch you can save a child’s life.
Duchenne Muscular Dystrophy (DMD) is a genetic disorder that causes progressive muscle weakness and degeneration due to the absence of a protein called dystrophin. It mainly affects boys and symptoms usually appear in early childhood.
Common early signs include delayed walking, frequent falls, difficulty climbing stairs, and enlarged calf muscles. These symptoms often become noticeable between the ages of 2 and 5.
Yes, there are treatment options available for Duchenne Muscular Dystrophy (DMD). Recent advances in gene therapy and medication have made it possible to significantly slow disease progression, improve muscle strength, and enhance quality of life. With early diagnosis and proper care, children with DMD can now live longer and more active lives.
DMD is typically diagnosed through a combination of genetic testing and muscle enzyme (CK) level tests, often followed by a muscle biopsy. Early diagnosis allows for timely intervention and better care planning.
Comprehensive Care and Support for Children With SMA & DMD
At SMA & DMD Support Network, we understand that managing neuromuscular diseases requires more than just medication. That’s why we provide a wide range of services to help children and their families navigate every stage of care.
Regular physical therapy helps maintain mobility, reduce muscle stiffness, and delay joint contractures. Early and consistent movement therapies are key to improving quality of life.
We assist families in accessing vital medical devices such as wheelchairs, respiratory aids, standing frames, and feeding support tools. These devices are essential for daily comfort, independence, and safety.
At SMA DMD Support, we understand that managing neuromuscular diseases requires more than just medication. That’s why we provide a wide range of services to help children and their families navigate every stage of care.
Ongoing medical evaluations are crucial. We help organize and support regular check-ups with neurologists, pulmonologists, cardiologists, orthopedic surgeons, and other specialists involved in long-term care.
Children with SMA or DMD may require surgeries such as scoliosis correction, tendon release, or gastrostomy placement. We offer guidance, emotional support, and assistance in preparing for these critical procedures. We are here to support every step — from early diagnosis to ongoing care — ensuring that no child faces these challenges alone.
