Mosaic to create foundation for spinal muscular atrophy

By NewsPress Now

Mosaic Life Care announced Friday a new foundation designed to help patients with spinal muscular atrophy.

Mosaic CEO Mike Poore made a statement Friday morning confirming Mosaic’s commencement of a multi-million dollar SMA gene therapy fund:

“We are pleased to announce the creation of a $3.4 million philanthropic fund through the Mosaic Life Care Foundation for the purpose of supporting genetic treatment for rare genetic neuromuscular diseases such as Spinal Muscular Atrophy (SMA). These critical funds are the result of a heroic $1.9 million anonymous donation and a $1.5 million gift from Mosaic Life Care. These funds are immediately available for the timely delivery of the gene therapy treatment Zolgensma.

Using our extensive government, hospital and medical connections, we have been making exhaustive efforts behind the scenes to successfully secure substantial additional support for the treatment of SMA. Additionally, we are hopeful these efforts will be able to significantly drive down the overall cost of this treatment.

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. 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.”

Details about the fund:

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Every penny will benefit SMA gene therapy treatments

If, for some reason the funds are not needed, they will be returned to the respective donors

The administration of this fund protects patients and their families from tax liability

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This comes after a local couple has garnered national attention as they seek treatment for their newborn twin sons who were diagnosed with the rare condition. The parents and their family called for help on social media, raising $400,000 through their GoFundMe page and announcing Wednesday that they had “great hope” their sons would be able to receive the treatment.

SMA is the most common genetic cause of death in infants and occurs in about 1 in 10,000 live births, according to the Muscular Dystrophy Association. While there is no known cure, gene therapies can help. However, such treatments are costly.