Who are we?

We are a group of families with children and adults that have been affected by one of the Neuro-muscular diseases (muscular atrophy), we felt that "together is easier".

As a result of the uniqueness of these diseases we realized that there does not exist a body that can provide an answer to different and special needs of this children and their families, and therefore towards the end of 2000 we joined together to found an organization whose purpose is action for improving the quality of life for children and their families.

What is Muscular Atrophy Disease?

Diseases that are caused by genetic disorder, the severity of diseases varies, but in the majority of the cases there is substantial weakness of the muscles. The first signs of the disease usually appear in the first years of life.
Over 300 diseases have been identified, the most common of them being Muscular Dystrophy Duchenne, Muscular Dystrophy Becker, Spinal Muscular Atrophy (SMA). The majority are still incurable. A wide range of research is being conducted in Israel and throughout the world in effort to find a cure for these diseases.

The medical treatment that is given today enhances the strength of the muscles, it is possible to improve and lengthen the quality of life in some of the cases with the help of treatment and surgery.

Discovering the disease causes an extreme upheaval of entire family. The children affected by the disease are in need of many and various treatments, such as physiotherapy, hydrotherapy, surgery and mental support, a large mount of these treatments and medications and are not included in the medical coverage. As a result, a great emotional, economic and functional burden is placed on the family.

Aims and Objectives:

Aims:

Improving the quality of life of children affected by neuro-muscular diseases and the members of their families, advancing medical research and treatment in people affected by diseases.

Objectives:

1. Mental support for affected children and their families.
2. Distribution of information among affected children and their families' for example: legal rights, new innovations, medicines and treatments, and all other relevant information.
3. Acknowledgment, definition and establishment of financing of the needs that are demanded by the government institutions.
4. Support of the research units and the treatment units.


What we have reached

While this report is being written in July 2005, we now number more then 140 families all over Israel.

  • We have succeeded in having two national conventions, two support groups in the northern part, and in the middle of the country. 
  • We have set up an internet site to distribute information in various fields and to bring awareness of our existence to those interested, and we see this as an important tool. The site was established by one of the sick children with the help of his family.
  • We are gathering information about research, new treatments, legal rights, recreation possibilities and all other relevant material from possible sources and distributing the information to members after verifying the creditability of the articles with medical staff that accompany us.
  • We have achieved cooperation of the finest doctors and medical centers in the country, and we continue creating, nourishing and guarding connection with doctors that specialized in this field, hospitals and medical centers.
  • We also work to find solutions for unique problems of those who inquire: guidance and directing parents to the different institutions to receive help and support, participation in casts, assistance in connecting between families of children with similar diseases.
It is important to emphasize that all activities and actions are totally voluntary acts by the families, the doctors that assist us, the social workers and the low firm that guides us.

Plans for the near Future:

Establishing more support groups.
Joint activities with the families.
Enlarging the awareness among the public to the diseases and the special needs of the patients and their families.

In order to realize these plans and to expand, both financial and human resources are needed.
Help us to help the families in need of our aid since "together is easier".

Donations: Meshi, under the auspices of "EITAN"
                      Account no. 700622, Bank Discount, branch 100, Tel Aviv.

Donations are tax-deductible.

People interested in additional information on our activities or to help with activities or to donate in any way are invited to contact Ayala or Yitzhak at organization address.