Families of Spinal Muscular Atrophy Sets Lineup for SMA Conference

Families of Spinal Muscular Atrophy (FSMA) knows just want families living with spinal muscular atrophy (SMA) want: loads of information and fun. And that’s just what attendees will get at the 2012 SMA Annual Conference, which kicks off June 21 in Bloomington, Minn.

The conference will feature opportunities for families to gather critical care and daily living information early after diagnosis, learn directly from experienced physicians and network with other families.

More than 40 workshops are planned. Topics include what it means to be a teen on wheels, good nutrition for all people with SMA, occupational therapy for all, swim therapy, and SMA and powered mobility.

In addition, special events are planned such as a children’s program, family fun fest and carnival, family dance party, and PJ party and movie night.

On June 22, Dr. Eric Olson, vice president and CF Program Leader at Vertex Pharmaceuticals, will present “Considerations for Successful Collaborations Between Disease Foundations and Industry in Orphan Disease Therapy Development: The Kalydeco Drug Example in Cystic Fibrosis,” and Dr. Mary Schroth, associate professor of pediatrics at the University of Wisconsin School of Medicine and chair of the FSMA Medical Advisory Council, will talk about the “Standard and Quality of Spinal Muscular Atrophy Care.”

The latest research will be presented in addition to a question and answer session with leading researchers and clinicians in the SMA field.

Through donations and sponsorships, any families newly diagnosed since the 2011 conference will receive free registration. These families should arrive before noon June 21 for a special general workshop program that will include

  • An introduction to families of SMA and the community
  • An overview of the annual conference and its goals
  • Understanding the genetics and the disease
  • Choices, evidence, hope and hype
  • Life after diagnosis – parents share their journey
  • Optimal care for SMA
  • Grieving and loss for parents

Approximately 900 people are expected to attend. Register here.