The Network for Spinal Muscular Atrophy (NESMA) is an organization composed of people with SMA and their families, as well as medical practitioners and other specialists and volunteers. It was founded on October 23, 1999, by SMA patients and families who were regular visitors to Tokyo Women’s Medical University Hospital.

Objectives
Until NESMA was founded, SMA patients and their families in Japan tended to be isolated, with no opportunities for interacting with others in the same situation. The goal of forming NESMA was to enable patients, families, and others to gather together and exchange their knowledge and experiences. To resolve the particular problems faced by those with SMA, NESMA also works to promote research on SMA and to collect medical information and disseminate it through appropriate media.

SMA patients and their families live in diverse communities but face many of the same everyday problems. To assist those with SMA to live independent lives founded on their own individuality, NESMA works to address not only medical issues but also those relating to welfare, education, and work. Whether SMA prevents a person from living independently depends not on the severity of the person’s symptoms but on the attitude of society as a whole toward disability and how the person is treated by society. It is therefore necessary to change attitudes and expand social resources (e.g. public and private facilities and support structures). So while our principal focus is the problems faced by SMA patients and their families, we are also committed to working with other patients’ and families’ groups to address broader issues. NESMA aims to be an organization that is open not only to patients and families but also to the medical practitioners, other specialists, and volunteers who support the SMA community.

Members
As of March 1, 2007, 200 families in Japan and overseas were members of NESMA. This does not include the advisors and volunteers who also play a vital role in NESMA’s activities.

Chapters
  • Kanto regional chapter (covering eastern Japan, including Tokyo)
  • Kansai regional chapter (covering western Japan, including Osaka)
  • Type 1 families group
  • Adults with SMA group

Results of epidemiological survey of Japanese SMA patients
The results of the first thorough survey of SMA patients in Japan are shown below. The survey was conducted jointly by NESMA and Tokyo Women’s Medical University Hospital to estimate the incidence of SMA in Japan. The results were announced in April 2006.

Subjects of survey: 2,620 institutions (hospitals, clinics, and care facilities)
Response rate: 34% (responses received from 888 institutions)
Number of patients reported: 473 (of which 348 were reported by pediatric units)
Breakdown of patient numbers:
  • Type I: 64 (13.5%)
  • Type II: 122 (25.8%)
  • Type III: 102 (21.6%)
  • Not specified: 185 (39.1%)

Estimated number of patients nationwide: 725 to 1,391

(This survey included only patients who have been diagnosed with SMA and make regular visits to hospitals, clinics, and/or care facilities. With no treatment or cure available, however, many SMA patients do not make such visits. If they, and infants who are yet to be diagnosed, were included in the figures, the real number of SMA patients nationwide would likely be greater than the estimate shown here.)

Video project
Electric Wheelchairs: A Ticket to Independence for Children with SMA
The sight of children using electric wheelchairs is nothing unusual for members of NESMA, but outside the SMA community there is often resistance to the idea of allowing a young child to “drive” what some regard as a small car. NESMA produced a video highlighting the ability of children with SMA to control electric wheelchairs and the importance of these machines in enabling them to gain independence and interact with their peers. The video (now a DVD) has been distributed to doctors, physiotherapists, teachers, and others and has been frequently used by SMA families in their efforts to obtain permission from schools and local authorities for children to use electric wheelchairs.

Gaining “specified disease” recognition for SMA
Under the Japanese government's “specified disease” system, people with one of a list of rare, severe diseases are exempt from all medical expenses and have greater access to nursing services. SMA is currently not one of the 45 conditions on the list, so NESMA is lobbying at the local and national level for its inclusion when the list is next reviewed. As a result of these efforts, SMA has been discussed in the Diet (Japan’s parliament) and has received media attention in several regions.

Contact information
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