
Crack the Code to Save a Life: Rare Disease Research
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Urgent Research Funding for Rare Neurodegenerative Disease in a Young Man: Please Help us Crack the Code
Please help my family crack the code on a rare neurological condition that has rendered my nephew bed-bound and in a wheelchair 24/7 for six years. Before this illness, he was a healthy 22 y/o living a full life as a scholar and athlete with aspirations to serve in public office one day to help others.
Now he is living with multiple debilitating symptoms. He can no longer walk, he is confined to bed, in constant pain and feels ill all the time. It is heartbreaking to watch him suffer.
After endless rounds to doctors, the medical community has had no answers! But we finally have some hope!
We have learned that he has a rare genetic mutation which could be the cause of his disease. Now, a local renowned team of scientists have offered to do multi-omics —translational advanced molecular, proteomic testing— to see if this mutation or something else is the cause. They are generously donating their time and expertise to solve this medical mystery, to search for a treatment and a path forward. We believe this work will lead to medical breakthroughs for others suffering from unsolved rare diseases as well.
He says, "I just want to be able to walk again, to feel the grass under my feet again."
This may be possible!
But we need your help to fund the costs for lab materials, and regulatory and administrative fees not covered by insurance. Your donation - any amount is appreciated - directly funds these costs. It gives him a chance at life as we race to solve this medical mystery.
Please help us help him and others! Please consider sharing this link with your network and community.
A very heartfelt thank you!






