In 2007 our organization started the Support of Families with Spinal Muscular Atrophy project as a reaction on the long-term demand of doctors and parents of the ill children. Until then there was no such thing in the Czech Republic. 

Today we associate 34 families with this disease. The patients are mainly children from the age of 6 months to 26 years. From the beginning we organized 4 weekend gatherings with professional programme in the Family House in Smečno. The first informal gathering of the families took place in 2007, where the specifics and the range of activities were defined. The most burning issue appeared to be the acceptation of the disease with all its consequences – the influence of the disease on the running of the family and partner crisis as a result of health disability of a family member. The work with children with disability and their healthy siblings was identified as very needed as well. Further demanded service was social counselling in the field of care allowance, the Health and Physical Disability Card, possible compensatory aids and gaining grants for their settlement from foundations that support this type of specifics.

In spring of 2008 the 2nd Psycho-rehabilitative stay was organized on this theme and the attendance of the families was more than double. The 3rd Psycho-rehabilitative stay took place in August 2008.  The 4th Psycho-rehabilitative stay for families with SMA took place in May 2009 in Hodonín u Kunštátu (photos from the weekend).

A verified and significant qualitative change in accepting the illness by all the participants is the occasion where, within the psycho-rehabilitative stays, a significant positive shift is apparent in psychic of the ill children as well as their parents and their siblings. Seclusion, which affects many of them, is the breaking mechanism in making the ill better. The joint gatherings also help to stabilize couple relationships or find new friendships among families and by this fore come the social exclusion.

We also consider the supporting activities for children very beneficial– in a form of psycho-relaxation techniques. This very important problem of the presence of disability in the family very closely affects children – children with SMA as well as their healthy siblings in comparison to the problems of everyday life. The possibility of open communication for this group was evaluated by specialists from different fields (psychologist, neurologist, paediatrician, special pedagogues) as very positive. 

The possibility of presentation of rehabilitative and compensatory aids by the manufacturer is now with our help closer to the families that are not able to get to i.e. trade fairs dealing with this issue or other sources. At every gathering there is an interactive lecture followed by individual consultation lead by a psychologist, psycho-relaxation training lead by a special education teacher and psychologist, presentation and testing of compensatory aids, represented by a professional company, professional neurology block followed by individual consultation with a doctor, socio-legal lecture with a possibility of consultation on up to date needs in this area with a professional and integration forum. We are always preparing the programme of gathering in connection with the needs of the families and some of the blocks in sequence with the previous meetings. Indiscerptible part is also an informal exchange of experience of all the participants during the breaks between the blocks or then in the evening by the fire place. During the duration of the programme a team of caregivers will look over your children. At http://www.spinalka.cz/?page=setkani you can find themes and photos from the gatherings. We also offer crisis intervention and support in a difficult life situation, upbringing, psychology and social counselling, strengthening of parents competencies, fixing and practicing parent’s skills, which help reasonable development of the child and family coherence.

Further activities include Parent education, renting vocational literature, support of exchange of experience – by holding parents gatherings or through discussion forums (which we established for this reason in 2008), helping with enforcing the law and interest in inter-field cooperation.

We created a dynamic information web for families with SMA http://www.spinalka.cz – where we keep up to date news in the field of social counselling, consultation and other useful links. Information web is managed by a SMA patient. That is a big encouragement for parents of newly diagnosed children that life could be of high-quality and beautiful even with such disability.   

This year we are preparing an extensive information campaign. Clear contribution of this information campaign within the whole Czech Republic is that we will address the ones, who live in isolation and through our offer of services we could increase the quality of their lives (visit of professionals at homes of the families, joint gatherings, news from the field of development and possibilities of cure of the disease through our "forum", quick psychological help and support of the newly diagnosed, etc.) and thanks to the developed Registry of Patients with SMA the patients can easily participate in clinical studies and will get the newest information on the outcomes of the research of treatment of SMA. The Registry will help the specialists to gain more knowledge about the incidence of the disease, about the epidemiology and the natural anamnesis of SMA.

We have also issued a brochure and a leaflet, which we are slowly distributing into hospitals, rehabilitative and other establishments.

Further activity is the realization of educational course for individuals taking care of a child with SMA. The education has two forms:

-          Distance learning, by using PC and internet (e-learning)

-          Daily learning, in a form of educational weekends

The advantage of e-learning is that it is possible to provide the information as a “first information help” to the family, it is possible to absorb the information in a rate that is suitable to the parents.

These our activities were welcomed also by the doctors, who deal with neurologic diseases of children, because they themselves, due to the progressivity and incurability of the disease, cannot offer that much. 

We are members of the Family of SMA USA www.fsma.org, where we are eager to follow the researches, which are conducted with the aim to find an efficient cure of the disease with the help of stem cells. The representatives of our organization participated in the 25th Anniversary Spinal Muscular Atrophy Conference http://www.fsma.org/LatestNews/index.cfm?ID=4483&TYPE=1150

We are partners of the European Organization TREAT – NMD www.treat-nmd.eu (Translation Research in Europe – Assessment and Treatment of Neuromuscular Diseases) and the German Organization Initiative – SMA in Deutschland http://www.initiative-sma.de/.

In cooperation with The National Disability Council we made remarks on the Act 108/2006 Coll. on Social Services, which negatively influences the patient’s families’ life situation and contributes to their social exclusion not inclusion.

Further our activity is the cooperation with the SOMSPOL association.
http://www.somspol.wz.cz/ospolecnosti.html

-          Participation at conferences and consultations

-          Support and consultations on the Education of SMA Parents project

Cooperation with the Research Centre for Integration of Disabled http://www.vcizp.cz/

-     Important activity is the consultation with Mr. Jan Michalík, Ph.D., Palacky University in Olomouc.

-     Remarks on the negative influences on the Act 108/2006 Coll., on Social Services.

-     Consultations especially in the field of: legal regulations of situation of the disabled, quality of life of disabled and caregivers, problems of discrimination of disabled, social services, education and school integration of disabled, employment of disabled individuals.

 
We a partners of Faculty of Health and Social Studies of University of South Bohemia in České Budějovice, with which we cooperate in the field of integration / inclusion of the disabled into the majority society and the increase of quality of life with SMA.