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South Shore Rotary steps out in support of 12-year-old with rare disease
Updated Mar 13, 2021;
Posted Mar 13, 2021
Princes Bay resident Drew Denmark, 12, who suffers from Phelan Mcdermid Syndrome, recently received support from the South Shore Rotary Club. From Left: James Young, Joseph Torres, Dean Balsamini Sr., Debra Denmark and Drew Denmark. (Courtesy of Debra Denmark)
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STATEN ISLAND, N.Y. Over the years, Princes Bay resident Drew Denmark, 12, who suffers from Phelan Mcdermid Syndrome, has received support from a myriad of Staten Islanders and local businesses in the quest to raise money for research about the rare disease.
And now he has the support of the South Shore Rotary Club.
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SILVER SPRING, Md., March 3, 2021 /PRNewswire/ In partnership with more than 70 advocacy groups, healthcare providers, and biotech companies, the Tuberous Sclerosis Alliance (TS Alliance), an internationally recognized nonprofit that raises awareness and funds to fight the rare genetic disease tuberous sclerosis complex (TSC), recently issued a letter to the National Governors Association that calls on states to immediately prioritize Americans with life-threatening rare diseases in their COVID-19 vaccine rollouts.
In late January, President Biden announced a strategy committed to vaccine distribution for high-risk individuals, specifically those with underlying conditions, including rare diseases. However, the 25-30 million individuals in the United States with rare diseases and their caregivers have yet to be prioritized in many states. The letter has already been submitted to several states and will be presented to every state in the
TS Alliance Advocates for Prioritization of Rare Disease Patients and Caregivers for COVID-19 Vaccines prnewswire.com - get the latest breaking news, showbiz & celebrity photos, sport news & rumours, viral videos and top stories from prnewswire.com Daily Mail and Mail on Sunday newspapers.