About Duchenne Muscular Dystrophy/ Becker Muscular Dystrophy:
Duchenne Muscular Dystrophy (DMD) is the most common fatal genetic disorder diagnosed in childhood, affecting approximately 1 in every 3,500 live male births (about 20,000 new cases each year). It is a rapidly progressive form of muscle degeneration that inflicts severe physical damage, particularly failures of the heart and lungs. Symptoms of the disorder are initially manifested in early infancy and include developmental delays in speaking and sitting, extreme fatigue, loss of upper body strength and arm movement leading to paralysis, and progressive difficulties in walking that result in the loss of the ability to walk, usually between the ages of 10-14. By the age of 12 most patients are wheelchair dependent. Over time, respiratory system deficiencies and cardiac problems occur, and by their late teens, the ill boys require constant support. Typically, young men with DMD survive into their 20s or early 30s.
DMD is usually hereditary; however, approximately 35% of the cases are due to a random spontaneous mutation. In other words, DMD can affect anyone and occurs across all cultures and races. Unfortunately, once a child is diagnosed with DMD, its progression is unstoppable. Although medical and paramedical treatments help slow down the symptoms, there is currently no cure for DMD/BMD (a less severe form of DMD).
The estimated number of DMD patients in Israel is 300.
About Little Steps
Little Steps is an Israeli nonprofit organization founded in 2010 by parents of children with Duchenne Muscular Dystrophy (DMD)/ Becker Muscular Dystrophy (BMD).
Our goal is to support families facing the everyday physical and psychological challenges of these disorders and to ensure that every sick child is provided with appropriate treatment.
To this end, Little Steps operates to spread knowledge regarding the disorders, symptoms, proper treatment, latest developments and increase awareness to detection tests and genetic screening.
Additional activities of the organization aim to assist the thousands of people who are affected by the disease – both the children and their family members. They include the following:
- Working towards establishing a special medical center for the sick children and their families.
- Operating a National Research Database in order to promote research of the disease while cooperating with similar organizations abroad.
- Distributing information on the disease to patients and their family members in a variety of subjects: the disease itself, diagnosis, methods of treatment, advances in medical research, ways to improve patients' quality of life, patients' rights and more.
- Training assistive dogs to help children and adults with special needs. Service Dogs provide much needed emotional and practical support to people with disabilities by promoting independent living, mobility, and offering companionship. These specially trained dogs can assist children and adults debilitated by DMD to perform daily tasks such as getting off the wheelchair, taking part in various activities, performing physiotherapy exercises, getting help in case of emergency, and retrieving items that are out of reach. In addition, spending time with a dog increases emotional and social well-being, and relieves loneliness. The training includes screening and selection of suitable puppies, basic and advanced training, targeted training for DMD patients' needs, integration in patients' homes, and ongoing supervision.
- Establishing supports groups (for the children and their family members) that provide an answer to the emotional aspects of the disease and in coping with its progression
- Providing professional technological training for youth who wish to integrate in the work force. This program aims to provide for the needs of dozens of young adults and youth with DMD/ BMD who wish to acquire technological education, find their place in the work force and achieve adequate social integration. It includes individual/ couples' technological training by professional counselors, in the comfort of the patient's home, and incorporates use of the patient's specially- adapted computer and a designated training program.
- Organizing professional and informational conferences, distributing brochures, and maintaining an updated website and presence in all media mediums.
Our main sources of funding come from philanthropic foundations, businesses and private donors.
The foundation is a 501© (3) tax-exempt corporation. All donations to the foundation are tax deductible.
Tali Kaplan, Executive Director