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Our club is planning for this year for the first time a

"Tay-Sachs European Family Conference"!



We love to send you the brochure of the first European familie conference via email! Simply take on the contact form to contact us and leave us your email address! Thank you!


The family conference is a great event that gives all families across Europe the opportunity to meet personally, to share their expieriences, to learn more about the research, learn valuable tips on care home and can create unforgettable memories with their loved ones!
The parents of our Angels in Heaven are welcome, even for you, we will figure out something great!

We are thrilled to be able to announce that Dr. Cox, head of the Tay-Sachs and Sandhoff research from Cambridge England, extra change his dates and flights to attend our conference  in person, and tell us all about the news in research!
Also Dr. Lagler, a specialist in metabolic diseases from Salzburg will be giving a presentation about all the news in the field of inherited metabolic diseases!
And also Dr. Spona of the company Vitalogic from Vienna will be there and enlighten us about all the benefits of amino acids therapy!


To help parents from all over Europe a bit with the costs of this great unique event we have come up with a great action!
Join and run for Tay-Sachs! More information can be found on our Facebook page, just click on the image to follow the link!

We look forward to you!






Run for the affected families to enable participation in the first "European Tay-Sachs Family Conference"!

It's easy!

* Contact us with our contact form to give your date (under the menu item "Association"), do not forget we need your name and the date on which you want to run !

*Find you sponsors:

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Ask your friends to sponsor your run! You'll sponsored per kilometer! Example, if your neighbor wants to donate € 5, - per kilometer and assures you run 5 km, you will get € 25, - in donations for the Family Conference! The Minimum Sponsorship is € 1, - per Km! The more sponsors, the better!
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* Download Runtastic app on your smartphone, so we can follow your course online

* Upload a Photo from your run on our Facebook page!

* You can run everyon any day, and at any time! Please simply announce the date! Thank you!

We look forward to you!
Run for a great cause!
Help the families meet for the first time in person and exchange!

Have fun!
Lots of love
Your hand-in-hand team!


A hard time

Many of our affected families worldwide have to suffer bad at the moment. Many beautiful children had to take their last journey this year. Too many had to leave, and too much suffering to endure the parents in this difficult time. We want to honor the deceased child and again adopt us the way to achieve them.

 

Farewell Archie!

 

On Tuesday the 26th March little Archie slept gently and with a smile on his lips in the arms of his loving parents Lauren and Bradley forever. Archie has fought almost four weeks bravely for survival, but his little body was too weak and eventually decided to go. Archie's fight against Tay-Sachs has touched thousands of people for weeks and astonish. He was not in vain the name of "Amazing Archie!"

Archie was a special child, and we will never forget him! Goodbye little angel!

 


Goodbye Holly!

 

On 18th March 2013 also little Holly slept in forever in the arms of her loving father and her mother by her side. Her little weak body is now free from the terrible disease Tay-Sachs and she can rest in peace. Your parents miss her terribly and we will never forget. Holly can now play with the other angels and live the life that she lead by this implies denying Disease remained on earth.
Goodbye little angel!


 

Farewell Leonie!

 

On Sunday the 17th March, we received a very terrible message. The small Leoni
e from Vienna did in the arms of her loving father Michael on the side of her loving mother Mary her last breath and left this world forever. Leonie died at the age of six years, at the NCL disease. She had a short life, and yet incredibly Leonie has touched many people in such a short time on earth. Leonie has opened the hearts of the people they got to know and learned to love. 
Her parents are proud to be her parents.
The funeral of Leonie was very difficult but we are sure that she is now in a nice place where she can play with all the other angels, laugh, run, and run around. We miss her terribly, and she will certainly never forget. Goodbye little angel!

 
 
If you want to light a candle for Leonie can do that here:http://www.gedenkseiten.de/leoni-melinda-warter/

The parents are grateful for the sympathy.




February 2013

Our website is finally online! Much still needs to be completed, but we hope you enjoy browsing!
The website will also very soon be available in english!



On February 28, 2013 is the International Rare Disease Day,
the aims and goals of this days is to bring awareness of rare diseases into the spotlight for a day!

We have the following campaigns:

Check out this link and watch a video made by Daniel Lewi, that was especially made for the Rare Disease Day (Founder of CATS Foundation UK):




http://www.youtube.com/watch?v=XHT3al14g10&feature=youtu.be

Please share this link with your friends via Facebook, Twitter or email!

This link also constitutes a campaign for our cause.
It is also important that you click on the link and then click Support, or "SHOW YOUR SUPPORT"



https://www.thunderclap.it/projects/1263-tay-sachs-and-sandhoff-disease