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Affected Adult Resources

Independence First
Independent Living Institute
Medicare Interactive (MI)
Opening Doors A Housing Initiative for the Disability Community
Through the Looking Glass
Gastrointestinal
The Gerd Word
Kids with Tubes
PAGER: Pediatric/Adolescent Gastroesophageal Reflux Association
General Resources for Parents and Affected Adults Angel Flights
American Disability Act
The Caring Voice
Family Center on Technology and Disability – Assistive technology works!
Family Village
Health Finder
National Resource Center for Respite & Crisis Care Services, ARCH National Respite Network
Grief and Bereavement

Center for Loss
Grief Recovery Online
The Sibling Connection
Medical Resources
The Merck Manual Online
Multilingual Glossary of Medical Terms
US Pharmacopeia
Siblings
 The ARC
Sibling Support Project
Parent Networks and Resources
 Chai Life, Fighting Illness with Love
Child Neurology Foundation
Exceptional Parent Magazine Online
Family Voices
Parent to Parent USA
Personal Stories

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

AbleData
Special Needs Toys, US + UK, France
Social Security related links

Centers for Medicare and Medicaid Services
Waiver Programs
Medicare Interactive
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.
A Special Wish Foundation
Believe in Tomorrow
Brass Ring Society
Children's Wish Foundation of Canada
Dream Catchers USA
Give Kids the World
Jason's Dream For Kids
Make A Wish Foundation®
Starlight Starbright Foundation
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