Learn more about the Association

If you want to know exactly what the club  “hand to hand against Tay-Sachs & other rare metabolic diseases, and VACTERL syndrome” is, then the first and foremost  question you would probably ask is:


What is Tay-Sachs?


Tay-Sachs disease is a rare metabolic disease, caused by a defective gene, that is still incurable and unfortunately leads in a few years to death.


Children with Tay-Sachs gradually lose all previously learned skills such as:

  • How to laugh and cry
  • How to sit and move
  • How to play, and the way they perceive things

They also:

  • Become blind and mostly deaf
  • Suffer with severe epileptic seizures,
  • It is very common for these children to die at the age of three from pneumonia.


Among the so-called lysosomal storage diseases Tay-Sachs is not an isolated case. There are more than 40 different forms (Sandhoff disease, GM1, Krabbe, Pompe, NCL, ...), most of them are not treatable and are devastating.


Such a diagnosis for both family and affected child is a doomsday notice. You have to  put all the plans, dreams and wishes that you had for your child aside and stand by helplessy wathching your child deteriorate from week to week.  A situation where death is everywhere.


But despite the terrible medical prognosis, there is still hope.

Researches in America and England have already had promising results from animal experiments on gene therapy. Because the disease is so rare the research is funded solely by dontations and there are so far only a few associations worldwide that support this cause and provide finacial support for research.


And that's where the association “hand in hand against Tay-Sachs” would like to help.

Our goals are:


  • to organize four charity events annually
  • Of all our revenue, either through events or donations, 50% will be donated to research.
  • the remaining 50% of revenue will go to our affected  savings account, with that money we help the afflicted families with financial challenges
  • But our association is not just about financial support, but rather to be a point of contact for afflicted families, to create a comprehensive information platform, and to bring together these families from around the world in order to exchange ideas and help each other through tough times by providing them with strength and togetherness.
  • With this in mind our association chairwoman launched the Facebook group "Tay-Sachs community", and in so doing has  already brought together more than 200 affected persons from around the world.
  • We want to assist those families affected in Austria by helping them to facilitate family planning by changing the law of preimplantation
  • Another aim of the association is to provide grief counseling on the Web. A guide of sorts to lead you through the painful journey of planning a funeral or a memorial service, and of preparing for the financial burden. We would also like to provide support and security at their time of bereavement.

 That's the primary aim of our club.

To be there for each other.

Because together we are strong.

A big Heart for little Hands