Little Steps Association for Children with Duchenne Muscular Dystrophy (DMD) / Becker Muscular Dystrophy (BMD) aims to improve the lives of patients and their families in Israel
Dealing with Duchenne-Beker disease requires a great deal of strength from families. We are here to assist and accompany them through the various challenges, they face with multiple authorities, in receiving treatments, providing knowledge, and receiving medication. We invite you to delve into the association's accomplishments in 2021.
About DMD / BMD:
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 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 350
About Little Steps
Little Steps is an Israeli nonprofit organization founded in 2010 by parents of children with DMD/BMD. Our goal is to extend life-expectancy and improve the treatment for DMD/BMD patients.
To this end, Little Steps operates with the following activities
Promoting research to find a medication
In recent years, Little Steps Association has invested over 2 million NIS in funding preclinical and clinical studies aimed at finding a medication for the disease.
The Little Steps association's collaborations with treatment centers and research companies have led to impressive achievements.
Most clinical studies in the world are conducted in Israel and about 60% of the sick children in Israel receive innovative treatments, as part of research or approval of new medications.
Little Steps Association manages the patient's database tracking the symptoms and treatment of each patient.
Operating a National Research Database in order to promote research of the disease while cooperating with similar organizations abroad.
Improving the treatment quality
Establishing a special medical center for the patients and their families.
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.
Holistic support for patients and their families
Establishing support groups(for the patients and for their family members) who provide an answer to the emotional aspects of the disease and in coping with its progression.
Psychological Support For the Family – The muscular dystrophy causes exacerbation of the disability, which requires the family to adjust and change its mindset.
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.
An adaptive surfing project for children with DMD/BMD. Its main goal is to offer an opportunity for individuals with physical disabilities to experience the sea and make wave-surfing accessible. Children with DMD/BMD learn the principles of wave surfing – both theoretical and practical aspects on surfboards that were designed especially for them. These surfboards are adapted for surfing on the stomach, with a professional counselor supports each child volunteers.
Promoting public awareness
Available updated information: Distributing brochures and videos which review the treatment standard, the psychological aspects. maintaining an updated website with the latest researches' summaries, and constant translation the updated information to Arabic
Producing conferences with DMD experts, researchers, pharmaceutical companies in order to bringing the updated information to families.
Promoting the DMD\BMD to everyone via newspaper articles, Television articles and videos.
We have chosen to share with you three stories of our friends from among the families. We would like to thank Agneta Golan – Eilon's Mother, Harel Ezra and Boaz Shvartz who agreed to share our their personal stories with us,
encouraging us to learn about additional options and ideas for activities.
Donations
Our main sources of funding come from philanthropic foundations, businesses and private donors.
All donations to the organization are tax deductible.
