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About the Association 2017-03-20T13:56:53+00:00

The Association ” Yad La Neshima” was founded in 2016 by Royi and Maia Dreier, parents of the twins Jonathan and Dan, who were diagnosed with a rare genetic syndrome called CCHS or “Ondine’s Curse.”
CCHS is an orphan disease which mainly affects its patient’s ability to breathe while they are sleeping. Some of the patient’s struggle to breath even while awake. In fact, without any sort of mechanical ventilation, the patients are putting their life in danger every night. The Foundation, aims to unite and support all patients and parents living in Israel. As well, The association works to raise awareness around the world to promote medical research.
Finally, “Yad La Neshima” aspires to bind different diseases, syndromes and medical issues with similar properties to find a cure.
“Yad La Neshima” aims to use the money it will raise to support research that will lead to a breakthrough. The current expenses of the association are kept at minimum level.

The establishment of the association – According to the chairman of the association Maia Dreier – Liberman,

“When we were informed that Jonathan and Dan were affected by this rare disease, we couldn’t find any information about it in Israel. There were no parents to address, no one to ask about it and no sites that contained the information about it. We felt as if we were given the worst news of our lives and that we are alone.
After we put together the pieces, we joined a group from the US that we found on the internet. They accepted us as a part of their family and with their help we got answers to our questions, emotional support and even some of the family’s names that are victims to the same disease.

We were astonished to find out how little is known about the disease in Israel and all over the world. Most of the doctors are even not familiar with this rare syndrome. However, the hardest thing was to acknowledge our children cannot aspire for a better future, as this orphan disease isn’t studied or researched enough.

After we recuperated, we swore to each other we will do anything to save our kids.
We knew we had to change this situation in which our kids’ lives are in danger each and every night.
We realized that only we, parents to children with this syndrome, driven out of self-preservation, we are the only ones capable of promoting awareness to the syndrome, and work nonstop and effectively to achieve our cause – develop a cure to this disease.”

The associations vision

The association aspires to create a reality in which this rare syndrome is curable and aims towards a world in which the patients’ quality of life will be better and safer without any unnecessary deaths of patients who fall asleep without a respirator.
Our mission is to fulfill the dreams of each and every one of the CCHS patients and their family members, to let them sleep peacefully and safely without fear for their lives each time they close their eyes, nap or even concentrate on TV or video games.
The association aspires to change the reality in Israel in which there is no law that regulates the issue of orphan diseases and motivates the drug companies to manufacture cures to such syndromes. Today, most of the funds for medical research and drug development is provided by pharmaceutical companies that operate solely based on their economic interests.
Currently in Israel, there is no incentive for companies to develop drugs for small numbers of patients since such companies will not be able to recover the huge investment costs in developing the drug. This leads to a situation in which there is no drug development for orphan diseases and the patients futures are left without hope. The association aspires to work with different organizations and associations to drive legislative change. The association aspires to fulfill its vision by fundraising, connecting socially, sharing information, and promoting dialogue between researchers in order to raise awareness of this illness all over the world.

If you think you are too small to make a difference, try climbing a mountain with a stone in a shoe…
Help to make a considerable change with your generous contribution to the Israeli CCHS Foundation, for more information please contact us in the email: cchsisrael@gmail.com