Team

Eva Irran

Chairwoman and mother of a daughter who suffers from Tay-Sachs disease.

"Hope is like a path, at the beginning it does not exist, it only arises when many people go the same way -.. Lu Xin"

"From personal experience I know that in Austria and in other German-speaking countries you can only find a little information about this disease, and the doctors have little experience with the disease, which can give a quick feeling of being completely alone. We did not know with whom we should talk, where we could get all the necessary information, and felt we were completely alone. It is my heart's desire to change that. No one should feel alone. In the event of such a devastating diagnosis everyone should have the opportunity to obtain information on German properly and comprehensively. The support of the research is close to my heart. It should be our primary goal that children who are affected with this disease, in the future, are no longer doomed to die, and have a chance for a normal life. "


Daniela Hinterholzer

Deputy chairwoman and mother of a daughter who died on VACTERL syndrome.

"Hello, my name is Daniela and I am a mother of a star child. My daughter Johanna had a rare genetic defect called "VACTERL" syndrome. I was devastated when my doctors told that they neither knew exactly where the disease came from, or if she would ever be healthy. Nevertheless, we fought everyday of her life, until the angels took her with them, at the age of five months. Shortly before she died, I met Eva Irran and met their little Haylie. She told me something about Haylie's disease and the idea to be founders of an association. Without thinking long, I was instantly there! It helps me very much to deal with the loss of my daughter, and therefore I would like to make humanity aware that there are children who need our help. Very sick children, without the research, cannot be saved. That’s why I help Eva with the founding of the club, to help! "
 

Marlene Schenk

Cashier and mother of two healthy boys

"Being strong means not to never fall, being strong means to always stand up again."











Andrea Edenstöckl

 Deputy cashier and mother of a healthy boy

"Even from stones which are placed in the way, you can build something beautiful.
- Johann Wolfgang von Goethe "










Daniela Krenn

Secretary and mother of two healthy boys and a healthy daughter

"I joined the club as a friend of an affected mother. I myself am lucky to have three healthy and active children. I would comfort the families as best as I can because I know very well how hard it can be with a Tay-Sachs child. I knew Eva and her family before they got the terrible diagnosis of Tay - Sachs disease. Being a very good friend, it is already very difficult to watch and know that no matter what you do, this nasty disease STILL cannot be stopped. My respect goes to the parents who work every day, for and with, their children in the war against Tay-Sachs. These parents are strong warriors, and once they are exhausted I will be there. Please help these families, the club and I to fight against this devastating disease. The research needs to be found as soon as possible for a cure so that these wonderful children can have more than three years left in this world.
With Love,
Daniela"

Kerstin Wölfl

 Deputy Secretary and mother of a healthy son and a healthy daughter

"Hope can seem to be as endless as the ocean, but every ocean ends sometime with a coast."


Other important members of the association:

Michael Pulker

Association Secretary and father of two healthy children

"I met by coincidence via Facebook the fate of Eva and her daughter Haylie. As a father of two healthy children (who are about Haylie’s age) the story was very moving for me and made me aware of how fortunate and blessed healthy children are. Even though I live quite far, spatially separated, from the association headquarters, it is my aim to support this great initiative and to contribute to help those affected. "






Susanne Mayböck

Association Secretary

"I joined the club because the destiny of little Haylie touches my heart so deep, that I just want to help.
I admire the strength and commitment of Eva. She is achieving greatness. I still do not have children, but I love them and would like that the suffering of these innocent little people is alleviated and is healed. I am committed to the club and hope we can achieve a lot! "