The nonprofit organization Cure SMA has announced the launch of a new chapter based in Virginia. The new Cure SMA Virginia Chapter will not only serve residents of the state, but also those with the disease and their families in Washington DC.
The establishment of the Virginia chapter was made possible by key regional SMA advocates who will serve as chairpersons responsible for running the operation. Jessica White will be in charge of family support, while Jim Ferry will work in fundraising and Kyle and Laura Derkowski will be responsible for both communication and awareness. The team is already preparing the first event of the chapter, the Walk-n-Roll, which will take place next September.
“The chapter is excited to begin helping families throughout their area, and fundraising to support research to find a treatment and a cure for SMA,” announced the organization on its website. “Our thanks to Jessica, Jim, Kyle & Laura, and all the chapter officers who work tirelessly on behalf of our community.”
The new Cure SMA Virginia chapter will become the 32nd chapter associated with the organization, which spans the United States and includes 110,000 members and supporters. Each of the chapters focus on offering support to families in their local communities, providing practical advice and guidance for patients and their loved ones while promoting information on local advocacy and awareness opportunities.
There are some occasions when Cure SMA chapters work together to raise awareness and funding for the organization’s mission. Cure SMA recently engaged in a major $640,000 basic research funding program, during which it awarded a $140,000 research grant to support the development of a project conducted by Chad Heatwole, MD, at the University of Rochester. The “Development of a Clinically Relevant Outcome Measure for SMA Therapeutic Trials” project intends to develop a new and accurate way to report clinical trial outcomes of adults who suffer from SMA.
In addition, the non profit organization is also currently organizing its Annual SMA Conference for members and other interested parties, which will take place between June 18 and 21 in Kansas City, Missouri. The event has been held by the organization since 1989 and is currently the largest SMA-related research meeting in the country with an added educational component for patients and their families.