WRITTEN BY: PARINITA GUPTA
(July 22, 2023) It was March 2000, when Loren Eng and Dinakar Singh were elated to hold their newborn daughter Arya Singh for the first time. For the first few months, it was all routine to the parents, until Loren noticed that their daughter was having difficulties in walking. After multiple rounds to the hospital, it was particularly harrowing for Loren, who was carrying her second child, to find out that Arya had spinal muscular atrophy, or SMA, a progressive and fatal disease in which the nerves that control the muscles slowly waste away.
Shocked and heartbroken, the parents were determined to find a cure for their daughter, as back in the day, there was no cure or treatment for SMA. Loren and Dinakar invested $15 million to establish their own charitable organization called the ‘SMA Foundation.’ Their primary aim was to sponsor new research with the goal of finding a cure not only for their daughter Arya but also for the 25,000 other young children affected by the disease. “It’s a condition that can be common and potentially treatable, but unfortunately, there was no drive to initiate the necessary drug research,” stated Dinakar, who is now the Chairman of the Board.
Since the Foundation started, it has contributed more than $150 million towards research and the development of therapeutics. It maintains collaborations with many academic medical centers, the federal government, and nearly every major pharmaceutical company worldwide, including Roche, Biogen, and Novartis. “When the SMA Foundation was founded in 2003, there were no treatments available. However, through the Foundation’s investments and drug discovery efforts, there are now three FDA-approved drugs, along with several others in advanced clinical and preclinical development stages,” informed Loren, President of the foundation.
The foundation’s initial investment played an important role in the creation of ‘Spinraza,’ the first drug to receive approval for SMA. In 2017, Spinraza won the Prix Galien Award for Best Biotechnology Product of the year. “The SMA Foundation supported the basic science research and established a clinical trials network, actively participating in the comprehensive process of therapeutics development that eventually led to the creation of the drug Spinraza,” told the Global Indian.
Loren and Dinakar’s primary objective through the SMA Foundation is to accelerate the development of treatments. The foundation focuses on forming partnerships with academic and industry collaborators, creating research tools for in vitro and in vivo studies to benefit the research community and industry partners.
Since the foundation started, even more treatments have been developed. And as Loren saw and experienced her daughter, Arya’s life transformation, she believes that these are only the initial phase of progress. “These treatments will benefit not just SMA patients but other neuromuscular disorders and diseases of aging,” she says.