RESEARCH HELPS TURN INCURABLE DISEASES INTO CURABLE ONES
When we heard the diagnosis of an incurable disease for our one-year-old son in 2018, it was the hardest hit. However, it was thanks to this that the Association of Gene Therapy was established. We launched a unique project to support basic research into the treatment of rare genetic diseases.
"Your baby has a rare incurable disease." This sentence has been heard by millions of parents around the world. In the Czech Republic, it's every 94th parent. 5 years ago, we were the 94th. It's the sentence that turns your life upside down, whether you want it or not.
Join us!
Our son Oliver has been diagnosed with Angelman syndrome (AS), a rare genetic disorder that will require lifelong care. It´s manifested with intellectual disability, walking difficulties, and epilepsy. Oli cannot speak and sleeps very little. Nevertheless, he motivates us every day with his charming smile and energy.
We have decided to do something unique for Oli and all other Angelman´s. We reached out to Czech scientists and together we started research to find a treatment for this rare disease.
Treatment for seriously ill children This fundraising campaign supports the research into the treatment of our children and grandchildren because none of us know if one of our loved ones will ever hear the same unwanted sentence. It is a best investment in the health of our children and grandchildren. Don´t you think so?
Findings from this research may help not only in the treatment of rare diseases such as Angelman syndrome but also in the treatment of various other serious conditions, including autism, Alzheimer's disease, Rett syndrome, and many other serious diseases. This treatment will help many patients like Kryštof, who suffers from recurring epileptic seizures. Eliška, who would like to learn how to ride a bike like her two siblings. Martínek, who wants to get up from his wheelchair and walk again. Our Oli, who wants to tell us so much but he cannot. Dominik, who, at the age of 3, has never slept through the night, and many others.
"We perceive research support as another important way to help people with severe illnesses. Not only can we help Oliver, but research like this benefits society as a whole" said Lenka and Rado Hajgajda, founders of Asgent.
There are 350,000,000 people in the world with rare diseases, which is more than those with AIDS and cancer combined.
In the Czech Republic, there are 500,000 people with rare genetic diseases.
What will we support? The research team at the Czech Centre for Phenogenomics, led by associate professor Radislav Sedláček.
For 2023, our goal is to raise 1.2 million Czech crowns. If we succeed, it will be a contribution of almost 3 million crowns to research over the course of 5 years of our organization's activities, thanks to donations. You can read about the current results and research outcomes in our organization's annual report.
Indeed, the development of treatment for rare diseases is a highly costly endeavor. Due to the small number of patients affected by each individual condition, they often receive less attention and funding compared to more prevalent diseases. This makes it challenging to secure resources for research and development in the field of rare diseases. However, despite the financial challenges, organizations like ours are dedicated to supporting and advancing research to find effective treatments and improve the lives of individuals with rare diseases.
Finally, our organization's mission is to raise awareness about rare diseases. We point out their current and future treatment possibilities in collaboration with patients and scientific organizations. We popularize science and research and engage in advocacy for patients and their families.
Držím vám palce!
Držíme palce a obdivujeme vaši sílu. Zdravíme do Kořenova a Liberce Kryštůfka a rodinu. Jirka, Káča a Vája
Pro všechny andílky. Držíme palce. Fialovi :-)
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