JTSMA Contact
Volunteer Network

The Contact Family Network
The Contact Individual Network
The Young People's Contact Network
Contacting the network Coordinator

THE CONTACT VOLUNTEER NETWORK

The JTSMA Contact Network is made up of three specific areas; namely Contact Families, Contact Individuals and the Young Persons. The aim of these networks is to provide an information and support resource for people affected by SMA.

In order to utilise this resource and tap into local knowledge six regional clusters have been designed.

The members of all three networks in each of the regions work together to provide a co-ordinated service within their allocated geographical region. The group members support each other with activities such as organising information and support and awareness about SMA and the Jennifer Trust.

Although the Network has three defining areas it is run under the umbrella name of the Contact Volunteer Network, with Rachel Ford co-ordinating the networks offering back up and support to all Contact Network Volunteers. The three areas of the Network are described in further detail:

 Map of cluster groups
Email about Cluster Group 1 Email about Cluster Group 2 Email about Cluster Group 3 Email about Cluster Group 4 Email about Cluster Group 5 Email about Cluster Group 6 Muscular Dystrophy Ireland AFM in France

THE JTSMA CONTACT FAMILY NETWORK
Across the United Kingdom the network operates on a regional cluster basis. In each cluster there are two Contact Families, one has experience of Severe/ Type I and another, Intermediate or mild SMA. The Contact Families all have personal knowledge and skills of living with SMA, which can be shared with other families. They may also try to put new families in touch with other people in their region who may live closer, and whose experience is similar, be it children the same age or have lost a child more recently.

In many areas the Contact Families, arrange area get-togethers, social events where people can meet each other and exchange experiences.

Contact Families play an important part in educating people about SMA and the effect it has on those involved and has close links with the Education and Training Service of the Jennifer Trust.

All the volunteers have been invited to their role because it was felt that they have wide experience of SMA, both Severe, Type I where they themselves have lost a child and Type II / III whereby they live day to day with the effects of SMA. They are good listeners and are willing to share their experiences at the same time as offering non-judgmental support to a family whenever it is needed.

THE JTSMA CONTACT INDIVIDUAL NETWORK
Contact Individuals are people with direct experience of SMA Types II, III and Adult Onset, who hold a wealth of knowledge and understanding based on that experience, they also possess the ability to communicate with, and listen to, others affected by SMA.

The Contact Individuals are based all over the country, but are just a phone call or letter away. The Network does not run on strictly geographical lines, each CI offers their own particular skills and expertise. Referrals are routed by the Network Co-Ordinator. The Contact Individual Network is for anyone who is affected by Spinal Muscular Atrophy. Though the Network is primarily concerned with SMA Types II, III and Adult Onset, it is very much a part of the JTSMA family and shares with the Contact Family and Young Peoples Networks in the commitment of the Trust to offer mutual support and understanding based on direct and shared experience.

YOUNG PEOPLES CONTACT NETWORK
The Jennifer Trust for Spinal Muscular Atrophy (JTSMA) offered this service as a result of concerns about the options available to young adults living with Spinal Muscular Atrophy (SMA). As children develop into adulthood, the services and resources previously available become greatly diminished, this happens at a time when young people have some very serious decisions to make concerning their own personal development. There is no reason why people with a disability should not live rewarding, challenging and productive lives, should not live independently and should not excel in their chosen profession.

The Jennifer Trust for Spinal; Muscular Atrophy has developed a service aimed directly at dealing with these issues. The most valuable resource we have to offer is PERSONAL EXPERIENCE, the opportunity to talk to someone who has been in the same or a similar situation can be of immense benefit, sometimes a bit of advice or just a friendly ear can make what seems impossible, possible.

This service is designed for 16 - 25 year olds living with SMA, this service is provided by a peer led resource of volunteers across the UK with direct experience of SMA. The volunteers cover a broad background of experience and provide an advice and support network, dealing with issues relating directly to young adults living with a disability. Further Education, Higher Education, Personal Assistants, Equipment, Housing, Employment, Benefits or simply general help and support - these are just some of the areas that the service covers.

TO CONTACT THE NETWORK CO-ORDINATOR
PLEASE CALL, E-MAIL OR WRITE TO:
Tel: +44 (0) 1789 267520,     Fax: +44 (0) 1789 268371
E-mail: rachel@jtsma.org.uk		 affix stamp
Rachel Ford
JTSMA
Elta House
Birmingham Road
STRATFORD upon AVON
Warwickshire,   CV37 0AQ,   U.K.
TO OBTAIN JTSMA INFORMATION SHEETS BY POST
PLEASE CLICK HERE


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