2019 SMA CONFERENCE
The 2019 SMA Conference was held in June in Anaheim, California. The event, in it's 31st year, had record attendance of 2,500 attendees including over 700 researchers and clinicians from 160 organizations. The agenda included 65 family workshops, 165 research presentations and 70 care presentations.
SMA is now changing. Individual needs and even our whole community are changing. We are expanding our research, care and support programs, while our commitment and community values remain the same as they always have been. As therapies are approved, research and care are more important than ever. We need to understand and optimize the impact of these therapies and develop combination approaches and additional therapeutic targets to treat all ages, stages, and types of SMA, especially for teens and adults.
One of our most important initiatives in this area is the SMA Care Center Network. The network now has 14 centers and we will continue to add care centers across the US, to improve care and results, and to increase access to new therapies.
SMA AWARENESS MONTH
The 2nd Saturday of August is national candle lighting day to remember the lost. We went to an annual candle lighting event in Dublin and plan to go again this year.