Member Support Services In Detail
Peer Support Group
The Peer Support Group (PSG) includes:
- parents,
- grandparents,
- extended family members such as aunts, uncles, older siblings,
- affected adults, their spouses, children, adult siblings, and
- caregivers.
Members are also invited to nominate friends to be part of their extended family and join the
Peer Support Group.
Telephone Network
NTSAD is pleased to provide telephone calling cards to PSG members in the United States with children affected by infantile and juvenile forms of the allied diseases. The telephone network is designed to enable PSG members to communicate with one another in an effort to provide support, reduce feelings of isolation, exchange practical care info rm ation and share resources and ideas related to medical care, clinics, insurance, social services and hospice programs. The telephone network is not intended as a substitute for professional medical treatment. Always consult your physician regarding your loved one's care. The cards are only to be used to call other PSG group members within the US and may be used at any time; NTSAD has a flat rate plan.
Annual Conference
PSG members are invited to the Annual Family Conference held in a different location every year. Conferences offer respite from members’ often isolating experiences in their own communities. Conference attendees take part in workshops and sessions covering myriad topics, including symptom management, medical and research updates, socialization, grief, various psychosocial issues, relaxation and support. Leading researchers and clinicians also attend and are accessible to address your concerns. Helping Hand Grants are available to members to lend a ‘helping hand’ with the expenses associated with attending the conference.
Be sure to receive your brochure!
Conference brochures are mailed to all Peer Support Group Members in October; if you are not a member be sure to receive it by sending your mailing address to Kim@ntsad.org
Couldn’t attend in 2006?
Hear the 2006 Medical & Research Update Session! Provided by GOLD - Global Organisation for Lysosomal Diseases made possible by educational grants from Actelion and Genzyme.
Ways to Support the Conference
Support the Helping Hand Grant Fund by shopping at Sally Foster.
The Helping Hand Grant Fund assists families and individuals with the expense of attending the annual family conference who otherwise could not attend.
The Helping Hand Cookbook (available from the NTSAD Home Page)
Publications
PSG membership includes a subscription to Lifeline. This aptly titled quarterly newsletter is published by and for NTSAD members. The editorial content is wide ranging: symptom management and home health care; new product reviews; guidance in benefits and services advocacy for families and affected individuals of all ages; science and medical research updates; coverage of NTSAD events, fundraising, programs and administrative activities. Members contribute articles including essays and poetry that help boost morale of the readership, deepen their connections to each other, and honor or memorialize loved ones.
PSG members dealing with chronic forms of the allied diseases also receive the Late Onset Tay-Sachs Community Newsletter, a bi-monthly newsletter focused specifically on the issues and perspectives unique to adults struggling with long-term disability issues.
Expert Resource
NTSAD’s extraordinary Scientific Advisory Committee is available to lend its expertise to members and/or healthcare professionals. Please send any questions to Kim@ntsad.org; we often say that we may not know the answer, but most likely we will know who to ask.
CONTACT PERSON:
Kim Crawford, Director of Member Services
Kim@ntsad.org or 1-800-906-8723