We are happy to announce the establishment of the Adult Advisory Council. The Adult Advisory Council is a volunteer council that provides guidance, advice, and feedback to Cure SMA in relation to several topics. These topics include support programs, patient care, engagement, independence, advocacy, accessibility, education, transitioning to adulthood, and much more.

Members of the council will draw upon their experiences as individuals living with SMA. They will also address issues that are important to the growing adult population living with SMA as leaders in their respective disciplines.

While the majority of members on the advisory council will be adults with SMA, membership will also include professionals who can contribute based on their experience with topics specific to adults with SMA. The council will make recommendations that will assist Cure SMA in improving the lives of adults living with SMA.

Council members will serve two-year terms and have the option to serve two terms. The members of the first term are Carolyn Barrett, Angie Lee, Emma Lockwood, Doug McCullough, Mary McHale, Brad Nunemaker, Shannon O’Brien, Collin Pollock, Kevin Schaefer, Sandy Spoonemore, Dany Sun, Lyza Weisman, Brynne Willis, Angela Wrigglesworth, Shannon Zerzan. The chair of the council is Cure SMA’s Colleen McCarthy O’Toole, Vice President of Events and Family Support.