Getting patients well, keeping them well, and focusing on a cure
Do I Have CGD?
After Being Diagnosed
General Information about CGD
Doctor Visits & Hospitalizations
Specific Infecting Organisms
Your Time in the Hospital
Support for Parents/Patients
Services for Parents/Patients
Updates on CGD Patients (2011)
Professional PID Links
Contact & Nonprofit Info
Do I Have to be Sick to be Special?
Rachael Goldborough, LCSW, MPH, of Siblings That Are Really Special (STARS) at the Children.s Hospital - Oakland, California, a group similar to the Sibling Support Project, describes the following feelings of some siblings of brothers and sisters of children with special needs:
Sibling Support Project
The Sibling Support Project is a great organization that has as its purpose meeting the unique concerns of brothers and sisters of children with special needs, such as CGD. This group was started in 1990 at the Children.s Hospital and Medical Center in Seattle, Washington. It is now an international organization with members from Canada, Australia, England, Ireland, Iceland, Hong Kong, Japan, South Africa and New Zealand. Although their emphasis is on children, they also deal with the concerns of fathers, grandparents and others interested in the well-being of siblings.
Sibshops, for ages 8-14, are special two hour or two day events that provide brothers and sisters of children with special needs opportunities for peer support and education through activities. Most groups are facilitated by an educator and a social worker that plan activities encouraging educational, emotional and social growth in the group members. The group seeks to provide siblings with opportunities to share their experiences with other brothers and sisters and to reduce their feelings of isolation.
Two newsletters are published by the Sibling Support Project . National Association of Sibling Programs (NASP) newsletter and Sib to Sib, an excellent newsletter that features articles written for and by brothers and sisters of kids with special needs.
The Sibling Support Project web site on the Internet is at www.siblingsupport.org. SibKids (for younger brothers and sisters) and SibNet (for older siblings) allow brothers and sisters an opportunity to share information and discuss issues of common interest with their peers from around the world. Also found on this website are a listing of existing sibling programs, a resource list of books, videos, movies, periodicals for and about brothers and sisters, links to other web sites on the Internet for families of kids with special needs, back issues of the NASP Newsletter, and a list of where and when Sibshops meet. For more information, contact:
The Sibling Support Project
Children.s Hospital and Medical Center
P.O. Box 5371, CL-09
Seattle, Washington, 98105-0371
Tele: (206) 368-4911
Siblings of Kids with Special Needs (U. of Michigan) (link)
Yes! - 100% of your donation goes towards CGD research.