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Leading the Fight to treat
and cure Tay-Sachs, Canavan and related diseasesdonate button

  • The Diseases
  • Find Support
  • Research
  • Help Prevent
  • Get Involved

Meet the Families

Families of the NTSAD Peer Support Group have provided photographs and web site links in honor of their loved ones who has been diagnosed with an allied disease.

If you would like to contribute a photograph and link, please contact Kim Kubilus, This email address is being protected from spambots. You need JavaScript enabled to view it. .

Family Web Sites

Many links in this section will bring you to a web site created by the family.

Healthcare Blog Sites

Care Pages, (www.carepages.org), and Caring Bridge (www.caringbridge.org) provide a free online blog to families dealing with healthcare situations. Links to these blogs mayl require you to register to in order to read the blog.



Meet the Families

  • Meet The Families
    • Tay-Sachs
    • Tay-Sachs Juvenile
    • Late Onset Tay-Sachs
    • Canavan
    • GM-1
    • Sandhoff
    • Sandhoff - Juvenile
    • Metachromatic Leukodystrophy
    • Siblings

Infantile & Juvenile Support

  • Infantile & Juvenile Support
    • Parenting a Child with Life-Limiting Illness
      • Family Online Order Form
    • Newly Diagnosed
      • First Steps
      • Philosophy of Care
      • Free Info Packet
      • Register for Research
      • Become a Member
    • What to Expect
      • Infantile
      • Juvenile
      • Canavan
    • Symptom Management
    • Special Equipment
      • Respiratory
      • Positioning
      • Other
    • Services
      • In Home Services
      • Early Intervention & Beyond
      • Getting Outside Help
    • Palliative & Hospice Care
      • Palliative
      • Hospice
      • About Insurance
    • Making Memories
    • Coping
      • Taking Care of YOU
      • Siblings
    • Ways to Help
      • Gift Ideas
    • Grief
    • Preparing for the Unthinkable
  • Late Onset Support
  • Meet the FamiliesMeet the Families

Contact

National Tay-Sachs & Allied Diseases Association
2001 Beacon Street
Suite 204
Boston, MA 02135

info@ntsad.org
800-906-8723 phone
617-277-0134 fax

NTSAD's Day of Hope

Visit NTSAD's Facebook Event page to list your event and see what others are doing this year! 

Contact Joan Lawrence, Director of Donor Relations and Individual Giving (joan@ntsad.org) or Diana Pangonis, Communications Manager (diana@ntsad.org) if you have questions or want to list your Day of Hope event here.

The Organization

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The Diseases

Tay Sachs
Canavan
Sandhoff
GM-1
Other

Leukodystrophies
Lysosomal Storage
Allied Diseases
About Inheritance

Find Support

Annual Family Conference
Become a Member
Free Info Packet
Meet the Families
Register for Research

Infantile & Juvenile
Tay-Sachs, Canavan, Sandhoff, GM-1

Newly Diagnosed
What to Expect
Symptom Management
Special Equipment
Services
Palliative & Hospice Care
Making Memories
Coping
Ways to Help
Grief
Preparing for the Unthinkable

Late Onset
Tay-Sachs, Sandhoff, GM-1

Newly Diagnosed
Communication Skills
Swallowing Difficulties
Employment
Housing
Mental Health
Mobility

Research

Potential Therapies
Overview
Gene Therapy
Stem Cell
Pharmacological Chaperone
Substrate Inhibition
Enzyme Replacement
Bone Marrow Transplant
Stop-Codon Read Through
Acetate Supplement
Biomarkers
Natural History Study
Evaluating Experimental Therapies

Research We Fund
The Research Initiative
NTSAD Research Strategy
Journey to a Cure
Tay-Sachs Gene Therapy Consortium
2011 Grants
2010 Grants
Past Grants
Lysosomal Storage Disease
Research Consortium


 Apply for a Grant
Clinical Trials
Scientific Meetings
Donating Tissue

Help Prevent

Carrier Testing
Types of Screening
Jewish Diseases
Tay-Sachs Disease
Prenatal
Screening Centers
Insurance
Education
Family Planning
Genetic Counseling
International Quality Control Program

Get Involved

Donate
Make a Gift
Events
Fundraising Ideas
Volunteer
Advocate
Raise Awareness
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