Member Support Services Links
Affected Adult Resources
Opening Doors A Housing Initiative for the Disability Community
Gastrointestinal
PAGER: Pediatric/Adolescent Gastroesophageal Reflux Association
General Resources for Parents and Affected Adults
Family Center on Technology and Disability – Assistive technology works!
National Resource Center for Respite & Crisis Care Services, ARCH National Respite Network
Grief and Bereavement
Medical Resources
Multilingual Glossary of Medical Terms
Siblings
Parent Networks and Resources
Chai Life, Fighting Illness with Love
Exceptional Parent Magazine Online
If you have developed a web page for a child with one of the Allied Diseases, please contact us, so we might add it to this list! Want to make one?
GM-1
Megan Mullaney's Web Site
William Marquardt
Mannosidosis
Taryn's World..and Welcome to it!
Metachromatic Leukodystrophy
Vanessa Sanchez
Niemann-Pick Type C
Jacob's Reach
Sandhoff
Zachary Bloomfield Web Site
Zachary Gibson Web Site
Joey & Clayton Mulligan's Web Site
Riley Luce's Web Site
Conner Watkin's Web Site
Conner Watkin’s Web Site2
Sibling Site
Cayden Watkins Web Site
Cailee Watkins Web Site A sibling's site
Tay-Sachs
PJ Arbogast Web Site
Timothy Carter Jr. Web Site
Travis Cole
Rachaeli Fier Web Site
Amelia Alford Web Site
Molly Grace Web Site
Conner Phillip Hopf Web Site-1
Dylan Manning Web Site
Elise ten Berge Web Site
Brandon Castillo Nava in Spanish and English
RJ's Web Page
Elise Ryne Rochman Web Site
Conner Watkins Web Site
Lacie Wivell Web Site
DJ's Homepage
Charles Lee Anderson
Krystie Karl-Steiger Web Site
Camilla Recalde Rodriguez (Spanish)
Gabriella Mazer-Rogers
Emma Rabinowitz
Carmen Coddington (AB Variant)
Juvenile Tay-Sachs
Dakota Bihn
MacKenzie and Spencer Web Site
Lexi Markowich
Bianca Anne Candy
Amanda Callagy
Friends of NTSAD
Liz Warren
Carrier Couples
Kornblum Triplets
Three options for free personal websites! PSG members have two options for creating free personal websites for their affected loved ones: Gina Watkins, CarePages and CaringBridges.
- Gina has been a PSG Member since the fall of 2001. She lost her son, Conner, to Sandhoff disease in March 2004. Gina has created a very informative website focused on Sandhoff and various aspects of the disease. To learn more about her web services, go to www.sandhoff.org and click on website information on the left.
- CarePages are free, personal, private Web pages that help family and friends communicate when someone is facing illness. NTSAD recommends CarePages over CaringBridges because CarePages donates $10 to NTSAD for every active page created and it also allows for more photos on the website. Visit William Marquardts’s CarePages site above. Create your own site at
http://www.carepages.com/ntsad. - CaringBridges offers free, easy-to-create web sites that help connect friends and family when they need it most. Visit Elise Rochman’s, Dakota Bihn’s, and Alexis Markowich’s Caring Bridge sites above. Create your own site from the homepage in three simple steps at www.caringbridge.org.
Specialty Products
Special Needs Toys, US + UK, France
Social Security related links
Centers for Medicare and Medicaid Services
Wish Granting Organizations
Every child should have an opportunity to realize their dreams; these organizations offer financial support to help families of terminally ill children do just that. Please note that each agency sets their own eligibility guidelines and some have very strict minimum age requirements for participation.
Brass Ring Society Children's Wish Foundation of Canada Dream Catchers USA
Starlight Starbright Foundation