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Fundraising Shop

Resources & Links

Medical Research & Information 

Mutations in the TTDN1 Gene Are Associated with a Distinct Trichothiodystrophy Phenotype

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 Malignant Mesothelioma Guide

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)

Amy and Friends

Mesothelioma Symptoms

Mesothelioma & Asbestos Awareness Centre - maacenter.org - the web’s leading resource for those

affected by Asbestos cancer

Mesothelioma Network

We provide mesothelioma patients with free resources, support, education, and referrals to experienced

mesothelioma doctors. We are a current sponsor of the American Cancer Society, MD Anderson Cancer

Center, Make a Wish Foundation and the National Patient Travel Center. We’ve also established a

scholarship for high school and college students that will help further educate students of this rare cancer.

Groups

Our Facebook Page

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                      13 Hursley Court, Craigieburn   Victoria   3064   Australia       contact@friendsofsammyjoe.org
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Contact Us
Email:  contact@friendsofsammyjoe.org Mail: The Friends of Sammy-Joe Foundation, 13 Hursley Court, Craigieburn, Victoria 3064 Australia Phone:                  Fax: 0407 558 151         03 9305 7591 Visit Us On:

Please Help Our Charity by Ordering From Aussie Farmers

The Aussie Farmers Direct fundraising program offers a healthy fundraising alternative for groups. It's a simple way to raise funds for your group! Thank you so much for your support.
This is how it works in a nutshell ... 2% of mum and dad’s weekly grocery shop with AFD can be donated     back to a registered fundraising effort. These funds are distributed twice a year. Your school/club/group     get 2 x cash injections to spend on whatever they like. Anyone who orders will help The Friends of     Sammy Joe Foundation. The aim is to have a standing order that you will receive on a weekly basis     containing Milk & Bread products or our Fruit & Veg, with free delivery straight to your door step.     Contact Marie & Marco at Aussie Farmers - tel: 0425 701 290 or click here to visit the Aussie Farmers Direct web site