Tag Archives: TORCH Award

TORCH Award Winner Mark Dant is Today’s Honoree

Posted on September 15, 2020 by

Mark Dant: A former police officer transformed by parenthood into the first national advocate for Mucopolysaccharidosis (MPS) I, a rare disease in which is son has. His son Ryan was given a life expectancy of 10-12 years and is now … Continue reading →

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TORCH Award Winner Melanie McKay is Today’s Honoree

Posted on September 14, 2020 by

Melanie McKay: A registered nurse and mom who set her mind to connecting families and advocating for statewide screening of Infantile-Onset Pompe Disease. Melanie was honored for her efforts in advocating for education, much-needed awareness, and research for a rare … Continue reading →

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TORCH Award Winner Rylee Noble is Today’s Honoree

Posted on September 13, 2020 by

Rylee Noble: A tween with the rare disease Mucopolysaccharidosis (MPS) was honored for her efforts in advocating for education, much-needed awareness, and research for this genetic disorder that causes a deficiency of an enzyme required to break down certain protein. … Continue reading →

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TORCH Award Winner Sharon Lagas is Today’s Honoree

Posted on September 10, 2020 by

Sharon Lagas: A mom who made it her mission to change the landscape of research for her boys after three generations of her family were diagnosed with Alport Syndrome including her and her mom and her brother’s children. Sharon co-founded … Continue reading →

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