Click here to donate to
The Friends of Sammy-Joe
Foundation
Click here to visit Sammy-Joe’s
Fundraising Shop at Cafepress.
Sammy-Joe’s mother Maria writes
about her experiences in her
online journal.
Click here to read the journal.
Donate Now
Fundraising Shop
Resources & Links
Medical Research & Information
Genetics Home Reference, Your Guide To Understanding Genetic Conditions - Trichothiodystrophy
Children's Medical Research Institute
The Association of Genetic Support of Australasia
National Institutes of Health Clinical Centre (Maryland, Bethesda USA)
(contact: Deborah Schmidt, Doctor Kraemer’s Clinical Nurse)
Medical News Today (archives)
MediLexicon
Organisations
XP Family Support Group
The Xeroderma Pigmentosum (XP) Society
Genetic Health Services Victoria
The Genetic Support Network of Victoria
Association for Children with a Disability
Very Special Kids
GeneTests
Share & Care Cockayne Syndrome Network (another DNA repair related disorder)
Groups
Our Online Support Group (Yahoo)
Carers In Oz (Blog)
Sunshine On Eagles Wings (Yahoo)
The Prayer Bears (Yahoo)
Quilts 4 Kids
Government
Federal Member of Parliament - Maria Vamvakinou
Sponsors
The Melbourne Wholesale Fruit, Vegetable & Flower Markets
Sammy-Joe
Children of Promise - Sammy-Joe
Other Children & Families
Collin Presley
Lily Grace Hasson
In Loving Memory of Makenna Marie
Matthew Mayhorn
A family with 3 children who all suffer from TTD
The Paulsons: Carrying A Light Burden
Email Links
Dr James Cleaver (who has done extensive research on the disorder)
Louisa Di Pietro -Thalassaemia Society of Victoria
info@geneticalliance.org
info@skinregistry.org
Music
To hear the songs below, you will need to download them to your computer. Please right click on a link,
select "save target as" and choose a location on your computer to save that song to.
A song that was written about Sammy-Joe
Sammy-Joe sings “I Like The Flowers” (recorded at school, December 2004)
© The Friends of Sammy-Joe Foundation 2011
Web Site by VP-IT
Contact Us
Email:
contact@friendsofsammyjoe.org
Phone:
0407 558 151
Fax:
03 9305 7591
Visit Us On:
Maria’s Online Journal