By BRENT MARTIN
St. Joseph Post
A $3.4 million fund has been established by the Mosaic Life Care Foundation to support genetic treatment for rare genetic neuromuscular diseases such as Spinal Muscular Atrophy (SMA), a fund that could be used in a St. Joseph case involving newborn twins.
Mosaic Life Care reports it contributed $1.5 million to create the fund after receiving a $1.9 million anonymous donation. The money is immediately available for the timely delivery of the gene therapy treatment Zolgensma.
Mosaic states it is also using its governmental, hospital, and medical connections to secure additional support for the treatment of SMA with the hope the efforts will help drive down costs.
“Finally, my deepest thanks also goes out to our network of caregivers who have worked by my side: the nurses, doctors, staff, government relations representatives, trustees and leaders who have conducted themselves with integrity to support, love and care for this issue,” Mosaic Life Care CEO Michael Moore said in a written statement. “At Mosaic Life Care, every caregiver works with a servant’s heart, and this is one of the finest examples of that value I have ever witnessed.”
The money could be available for cases such as that of newborn twins Easton and Eli Reed of St. Joseph, who have been diagnosed with Spinal Muscular Atrophy, a genetic disease that impacts the nervous system.
Nearly $400,000 had been donated through a GoFundMe page before their parents, Austin and Amanda Reed, suspended taking donations, stating on Facebook that the family feels more confident the boys will be able to receive the necessary treatment, which can cost more than $2 million per child. Amanda Reed works at Mosaic, but its employee health insurance does not cover gene therapy, a rather common exclusion by insurance companies.
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