Services

NTSAD Peer Support Group

A self-help PEER SUPPORT GROUP, for families of affected individuals and parents of affected children, is available to ease the emotional burden too difficult to bear alone.

PROGRAM HIGHLIGHTS

• give and receive emotional support
• obtain help through a crisis
• share resources and ideas about such issues as doctors, clinics, insurance companies, social services and hospice programs
• provide each other with practical suggestions about the day-to-day care of their children or affected family member
• establish enduring relationships with others who, on a personal level, understand both the anguish and the recovery of being the parent of a dying child
• receive LIFELINE, a complimentary quarterly newsletter with articles, announcements and other information of value to all affected by Tay-Sachs and the allied diseases
• receive a NTSAD's monthly electronic newsletter: E-News: The Same Page, which keeps members and friends of NTSAD current on advocacy issues, organizational updates and deadline reminders, as well as updates from NTSAD's chapters and affiliates.
• use of the NTSAD Lending Library
• NTSAD's Scientific Advisory Committee is available to lend its expertise to members and/or healthcare professionals.

CONTACT PERSON:

Kim Crawford, Member Services Coordinator
NTSAD
2001 Beacon Street, Suite 204
Boston, MA 02135
Kim@ntsad.org or 1-800-906-8723

FREQUENTLY ASKED QUESTIONS

WHAT IS THE NTSAD PEER SUPPORT GROUP?

The PSG is a mutual support group coordinated by volunteers who are parents, caregivers, grandparents, extended family members, affected adults and their spouses and/or adult siblings.

The NTSAD professional staff and the Family Services Committee Chairperson function as consultants to the PSG. There are approximately 400 families participating in the PSG at any given time. A DIRECTORY is distributed annually to participating families to enable them to contact others with whom they can share concerns as well as questions.

HOW DOES THE PSG OPERATE?

Once a family is registered, NTSAD will issue a phone calling card which will enable the family or individual to contact others in the PSG, at no cost to them (NOTE: available only in the United States and Canada). NTSAD funds this special telephone network. Email contact is also encouraged and a Message Board on the NTSAD website is available for postings .

IS THERE A FEE?

NTSAD provides support services to families of affected children and affected adults regardless of ability to pay membership dues. For those interested in supporting NTSAD services through membership, dues range from $25.00 a year and upward.

WHAT SHOULD I KNOW ABOUT THE NTSAD PSG DIRECTORY?

The NTSAD PPG DIRECTORY is distributed exclusively to families in the program. The sole purpose of the Directory is to provide PSG members with a vehicle to reach out to other families. All information contained within the Directory is confidential.

NTSAD strictly protects your privacy and will not make any information contained within the Directory available to any outside source. NTSAD further expects all PSG families to respect the right to privacy and, therefore, requests that all Directory information is kept confidential.