#missionCURE for PACS2 syndrome kids
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You are a parent. You learn that your child has incurable disorder. But you can change it. There is hope, you can find a cure. It means exploring new territories and sacrificing your personal life. For some years. So, do you take a chance?
- Darcie is 6 yo girl, born in the UK. Her parents dream about seeing her running with her peers. Still waiting for her first steps.
- Mateusz. 8 yo, born in Poland. Loved brother of his 3 sisters. Sisters who cannot be sure that he knows who they are. Still waiting for his first words.
- Hudson, 1-year-old, born in the United States. A boy full of joy, light, and kindness. Fighting a difficult road of unpredictable and refractory seizures. An overwhelm of worry, fear, and many times defeat for his mama and daddy’s heart. As lovely as he is, his development is still a great unknown.
- Theo, 12 yo, from Germany, has been there. For 4 long years his physicians couldn’t find right anti-epilepsy treatment for him. His parents are proud of what he has achieved despite the extremely difficult start. He still has global development delay and seizure potential but a minor intelligence deficit. As a Special Olympics Athlete, Theo shows his potential and gives hope for a good future. And imagine what if there is a cure making his unpredictable enemy to disappear…
- There is also Lena, our daughter. One of the two most positive human beings we’ve ever known. The second is her fraternal twin sister, forcing Lena every day to follow her crazy ideas. She can’t be discouraged by Lena’s limitations. Yet.
All those children and several dozens more spread across the geographies, suffer from the same mutation in the PACS2 gene. The picture of the disease varies. What is common – those children dream about normal life, without tons of therapies and sudden epilepsy attacks. We – their families – just dream about sitting with our children at the kitchen table, listening about their joys and desires, seeing them entering adulthood as independent beings, and having friends. For us, those are big dreams impossible to realize. But there is HOPE.
>> Dreams don’t work unless you do. <<
Although there are more and more PACS2 syndrome cases, it is still too few to count on commercial cure development – we need to do it by ourselves. In less than one year since Lena’s diagnosis, we’ve opened PACS2 Research Foundation (NGO), spoken to more than 60 scientists and physicians across the globe. And created THE PLAN. Plan for treatment development – our #missionCURE (LINK).
We don’t have full financing but the time is scarce: development windows close one after another for young children. So we’ve started several research, gathering funds in parallel. The hope became tangible. The progress is fast. Together we can change the lives of PACS2 families and contribute to the ultra-rare disease community.
Now the money is the enabler - please support our mission. Otherwise, our hope will stay just the perfect plan on the paper.
Below are some useful links:
Roadmap for treatment development: LINK
If you want to get to know us better: https://www.instagram.com/misja_cud/
Organizer
Piotr Kosla
Organizer
Zug, ZG