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Dear Raiden
Manage episode 345718519 series 3384407
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Raiden Pham is affected by UBA5 disease, a life threatening progressive neurological disorder that can cause muscle floppiness and stiffness simultaneously, seizures, brain abnormalities and much more. In fact, it is so rare that only about thirty suffer this unfortunate condition worldwide. At two years old, Raiden is unable to sit, walk or talk. He can barely control his arms, and is fed via a stomach tube.
Upon learning of Raiden’s battle, we knew we had to reach out to his father, Tommy. With little to no research being conducted, Raiden’s father founded the Raiden Science Foundation and partnered with the University of Massachusetts Chan Medical School to develop an innovative type of gene therapy. Following this partnership, the Kombat4Rare charity was established to raise funds for vital research. This experimental treatment is expected to be completed within 2-3 years, but they need our help. The clock is ticking — you can help make a difference by donating or helping to spread the word.
We are also joined by the lovely Kerri Hoskins, who is best known for playing Sonya Blade in Mortal Kombat 3. As a special needs parent herself to two young men (Luke and Zachary), she knows exactly what it’s like to face an uphill and uncertain battle.
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