Cure SMA’s Medical Advisory Council Sets New Care Agenda

Ana de Barros, PhD avatar

by Ana de Barros, PhD |

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Members of Cure SMA‘s Medical Advisory Council (MAC) recently met for two days in Chicago to set the agenda for the care of SMA individuals and families.

Mary Schroth, MD, a leading pulmonologist and professor of pediatrics, chairs the MAC, one of the most respected groups of SMA medical and clinical specialists in the United States. The specialists’ fields of expertise range from cardiology, orthopedics, physical therapy, neurology  and nutrition to palliative care, pediatric critical care, pulmonology, physical medical and rehabilitation and sociology. The MAC concentrates its efforts to educate SMA healthcare providers, families, and the public on ways to increase SMA standards of care and convert positive research outcomes into clinical practice.

Clinical Care Research Grants

One of the most important points on the MAC’s agenda was granting up to $150,000 in new clinical care awards, part of Cure SMA’s ample research funding scheme. The organization financially supports clinical care research into issues affect the daily lives of those dealing with SMA, from breathing to nutrition, as well as to improve patients’ quality of life.

Earlier this year, Cure SMA released a new clinical care research proposals request (RFP) for projects addressing clinical, social or psychological aspects related with SMA. Researchers were asked to submit their object of study along with a study plan, and details on why they thought their project might help people dealing with SMA.

At the meeting, the council evaluated the proposals, matching them to pressing unanswered questions and concerns in SMA. The selections were forwarded to Cure SMA , with clinical care grants to be awarded to the best proposals in December.

Setting the Care Agenda for SMA

MAC also works at its meeting to set the agenda for the following 3–5 years of care for SMA. At the moment, several pilot investigations in care (several financially supported by Cure SMA) are ongoing or have recently been completed. MAC members plans future steps that take advantage of the information learned from these pilot studies for future research directions and to improve patients’ standard of care.