Little Steps

Little Steps Association for patients with Duchenne Muscular Dystrophy (DMD) / Becker Muscular Dystrophy (BMD) aims to improve the lives of patients and their families in Israel.

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.  Usually between the ages of 10-14 these progressive difficulties result in the loss of the ability to walk, eventually leading to paralysis.

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 generally 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.

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.

Little Steps activities include:

Promoting Research to Find a Cure

  • In recent years, Little Steps has invested over 2 million NIS in funding preclinical and clinical studies aimed at finding a medication for the disease.
  • Little Steps’ collaborations with treatment centers and research companies have led to impressive achievements.
  • Most clinical studies in the world are conducted in Israel.  Approximately 60% of the sick children in Israel receive innovative treatments, as part of research or approval of new medications.
  • Little Steps 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 Muscular Dystrophy whilst cooperating with similar organizations abroad.

 

 Improving the Quality of Treatment

 Establishing a special medical center for the patients and their families.

  • Distributing information on the DMD\BMD to patients and their family members in a variety of subjects – the Muscular Dystrophy itself, diagnosis, methods of treatment, advances in medical research, ways to improve patients' quality of life, patients' rights and more.
  • Training service dogs to help children and adults with their 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 out of their 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 into patients' homes, and ongoing supervision.

Holistic Support for Patients and their Families

  • Establishing support groups for the patients and for their family members.  Providing 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, become employable and achieve adequate social integration.  It includes individual / 2 people group technological training by professional counselors, in the comfort of the patient's home, and incorporates use of a 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 and the psychological aspects. Maintaining an updated website with the latest research summaries and constant translation of the updated information to Arabic.
  • Organizing conferences with DMD experts, researchers and pharmaceutical companies, in order to bringing the updated information to families.
  • Promoting the DMD\BMD to the everyone via newspaper articles, Television articles and videos.

 

Donations

Our main sources of funding come from philanthropic foundations, businesses and private donors.

All donations to the organization are tax deductible.

American donors can donate via the PEF site: The organization is a 501c(3) tax-exempt charity.

Via Credit Card

Via PayPal

Via Bank Transfer

Contact details:

Tali Kaplan, Executive Director

Mobile: +972-54-634-5634

Email: tali@littlesteps.org.il