During the last few years, we have witnessed unprecedented progress fueled by an astounding volume of research and improvements in care for kids and adults with muscular dystrophy, ALS and related muscle-debilitating diseases that take away strength and mobility. I have been working in the neuromuscular community for more than 15 years, and I am energized by the hope and excitement in the eyes of clinicians, families and representatives from biotechnology companies.
On March 20, two days from now, MDA will kick off the 2016 MDA Clinical Conference in Arlington, Va. MDA is teaming up with American Association of Neuromuscular & Electrodiagnostic Medicine (AANEM) to bring together more than 450 neuromuscular disease experts, including clinicians, allied health professionals and scientists, to learn more about new and improved ways to provide better care to individuals and families, and to enhance outcomes that will save and improve lives for the kids and adults we serve.
At MDA, we know early diagnosis, highly specialized care and access to promising clinical trials help ensure the best possible outcomes for kids and adults facing muscle-debilitating diseases. Families are at the heart of our mission, and we are working with medical and scientific experts who are making it possible for MDA to help care for kids and adults from day one so they get the very best treatment.
Some of the topics conference attendees will have an opportunity to learn about include:
- Genetic testing in neuromuscular diseases
- Best practices for care of children and adults beginning with day of diagnosis, including diagnostic strategies, respiratory care and rehabilitation medicine
- Multidisciplinary care as a model for our work
- Caring for and empowering teens and young adults as they transition from pediatric to adult care
- Emerging therapies in development for neuromuscular diseases
Improvements in clinical care and research breakthroughs across diseases are helping individuals — and the families who love them — live longer and grow stronger. But our work is far from over. We are committed to increasing the number of clinical trials offered at MDA Care Centers across the country to bring cutting-edge treatments to families faster.
Also, as more genes are discovered, there is a pressing need for additional genetic counseling and a full understanding of how to integrate genetic testing into clinical practice. As we enter this new world of personalized medicine, how do we ensure that all patients have access to genetic testing? To address this question, part of the conference will focus on the importance of using telehealth to explore the implications for neuromuscular diseases and how to provide better access.
In order to accelerate progress and provide the best care, MDA is excited to partner with families and medical and scientific experts as we drive consistent, high-quality clinical care and work to ensure MDA Care Centers are prepared to serve as clinical trial sites.
The MDA Clinical Conference is an ideal gathering to share ideas about strengthening MDA’s multidisciplinary approach and our overall emphasis on family-centered care. But our work will continue in the weeks and months following the conference, and with our collective strength and determination, I know we’ll get there.