Parent Peer Group

Living with the certainty of a child's gradual decline and death creates an emotional burden too difficult to bear alone. There is little that can make the situation easier. However, contact with other parents can reduce the feelings of isolation that contribute to despair. Through the self-help Parent Peer Group parents of affected children can:

  • 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
  • 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

In addition to these services Peer Group members receive Lifeline, a complimentary quarterly newsletter with articles, announcements and other information of value to all affected by the Allied Diseases.

 

PPG FAQ:

WHAT IS THE NTSAD PARENT PEER GROUP?

The PPG is a mutual support group coordinated by volunteers who are parents of affected children or affected adults. These volunteers are also known as "Supporting Parents." NTSAD professional staff and the Family Services Committee Chairperson function as consultants to our Supporting Parents. The PPG is one of several programs supported and sponsored by NTSAD. There are approximately 400 families participating in the PPG 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. Supporting Parents are also available to assist families and identify other families in the PPG, coordinate additional services such as regional meetings, PPG newsletter, scholarship programs and lending library.

HOW DOES THE PPG OPERATE?

Families of children affected by Tay-Sachs or an Allied Disorder as well as individuals diagnosed with Late-Onset Tay-Sachs Disease (and their families) may register with NTSAD. Once registration has occurred, NTSAD will issue a phone calling card which will enable the family or individual to contact others in the PPG at no cost to them (NOTE: available only in the United States and Canada). NTSAD funds this special telephone network. NTSAD will also make arrangements via the Supporting Parents to enable new families and individuals to be in touch with one another.

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.
Families are also invited to participate in activities that help to support NTSAD programs. Some families have worked as volunteers while others have participated in fundraising activities and membership drives. NTSAD depends upon the generosity of families, friends, foundations and others to support vital programs which include: Public & Professional Education, International Laboratory Quality Control, Carrier Screening, Family Support Services and Research.

WHAT SHOULD I KNOW ABOUT THE NTSAD PPG DIRECTORY?

The NTSAD PPG Directory is distributed exclusively to families in the program. The sole purpose of the Directory is to provide PPG 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 PPG families to respect the right to privacy and, therefore, requests that you keep all Directory information confidential.

NTSAD maintains, updates, publishes and distributes the Directory. Changes regarding family information, address, phone number, etc. should be sent to the National Office so current information will always be available.