Cure SMA Announces New $50,000 Clinical Care Research Grant to Nilesh Mehta at Boston Children’s Hospital

We’re excited to announce that we have awarded $50,000 clinical care grant to Dr. Nilesh Mehta, for his project focusing on nutrition in SMA.

Some individuals with SMA are at risk for undernutrition, which means they are not receiving enough nourishment. Others are at risk for overnutrition, which means they are consuming too much. Many factors contribute to these risks, so it can be difficult for doctors and families to strike the right balance. Dr. Mehta will be investigating techniques to measure each individual’s unique needs, creating a nutrition prescription tailored for them.

Research Profile

Principal Investigator: Nilesh Mehta, MD
Institution: Boston Children’s Hospital
Project Title: Role of Individualized Metabolic Measurement in Children with Spinal Muscular Atrophy.


Both over and undernourishment can pose significant problems related to breathing, strength and endurance, for individuals with SMA. The proposed study aims to examine the role of novel approach where nutritional prescriptions are based on measured calorie requirements (metabolic testing) and therefore individualized for each child. Our study will also describe the muscle mass and fat mass in subjects and examine the accuracy of a portable device that allows these measurements to be made regularly and therefore allow a more detailed evaluation of the patient’s growth and body composition.

Such a method of assessing and prescribing nutrition tailored to each individual has been shown to be beneficial in other patient groups, but has never been tested in children with SMA. Children with SMA type II and III are vulnerable to malnutrition and could benefit from a nutrition therapy that would maintain their muscle mass and strength. This group is already faced with challenges to receiving the optimal amount of feeds. This is an area that has been neglected.


Results will help identify the prevalence of malnutrition, suboptimal energy intake (actual energy intake in relation to measured energy requirement), and body composition. The findings will a new paradigm based on measured requirements, and improve nutrition related outcomes.

Clinical Care Funding

This grant to Dr. Mehta is part of $225,000 in clinical care funding that we’ll be announcing over the next few weeks. We’ll profile each of the researchers who’ve received a grant, and share how their work can benefit those affected by SMA.

Clinical care research is the fourth prong in our research strategy. We fund clinical care research to understand the issues that affect daily life for people with SMA, from breathing to nutrition, and to improve their quality of life today.

The evidence-based clinical care projects we’re funding can improve the standard of care for those with SMA, educate medical professionals, and point the way toward new innovations.

Earlier this year, we asked scientists to submit their proposals for clinical care research projects. Our Medical Advisory Council then met to evaluate each proposal, and selected the most promising ones for funding.

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