The more I do with MDA, the more I learn about all that MDA is doing behind the scenes for our families. The 2016 Clinical Conference is a great example. The conference convenes world-renowned medical professionals to share best practice and discuss research advances — all for the benefit of MDA families. To attend as both the National Goodwill Ambassador and someone who has benefited from fantastic care from MDA Care Center staff at Children’s Hospital Colorado was both educational and emotional for me.
But first, a disclaimer. My background is in public relations and strategic communications; that’s what I know. At the same time, I spent my life surrounded by physicians, therapists, nurses, hospitals, clinics and the medical field. I have family and SMA to thank for the latter. Both of my parents are medical professionals. As you might imagine, medical jargon was the norm at most of our family dinners, as were awkward conversations relating to not just mine, but everyone’s personal business. Even though I grew up with it, science has never been my forte. But for the past three days, maybe because of my personal connection to the subject, I have been a sponge. Interacting with top experts and neuromuscular disease physicians has been eye-opening in more ways than one.
Caring for kids and adults from day 1
To kick off the conference, National Director of Clinical Services Lauren Webb offered energizing opening remarks, recognizing the great work the teams at MDA’s 150 Care Centers are doing for MDA families. She also provided a reminder of the potential that exists to reach even more people that could benefit from MDA’s services. She motivated the crowd to find ways to activate individuals and families to take advantage of the full array of programs and support that our Care Centers provide.
As we entered into the second day of the conference, I was honored to kick-start the activities by addressing the group of nearly 450 medical professionals from around the United States and beyond. (Hola to our amigos from MDA offices in Puerto Rico!) Among the hundreds of attendees were the doctors from Denver who have cared for me my entire life. To have them there was like having my entire extended family with me. So much of the success that I have achieved in my life is because of the support and guidance that I have received from each member of the team at Children’s Hospital, especially Dr. Dennis Matthews. It is because of the care of this team that I’m even here today.
Advances in genetic testing
After I spoke, the conference really began. During the first sessions, I listened intently to a presentation on the advances in genetic testing that have been made over the last few years. As with most genetic disorders, especially life-threatening diseases like those MDA fights to free individuals and families from, there is a growing interest in accurate and early diagnosis. During the session, Dr. Matthew Harmes and his colleagues brought attention to the rapid progression of sequencing technology that can help pinpoint precise mutations. This is an area of great hope for MDA families, as it means the earlier we identify the genetic causes of disease, the sooner we are able to provide personalized, tailored care for the individuals and families who need it.
A look at palliative care
Later that afternoon, I sat in on a difficult session: Dr. Joan Rosenbaum’s talk on palliative care. No one likes to discuss end-of-life protocols, but they’re important to acknowledge. My whole life I’ve avoided this subject because I felt it was really nobody’s business but my own. However, Dr. Rosenbaum reinforced that consciously preparing for death can be a liberating and healthy process for the individuals with the disease, as well those who love them. She invited us to think about a new model for palliative care and shared the story of a young man’s “meaningful death” that aligned with his wishes and took into consideration his family’s emotional needs. By the end of her session, tears glistened in eyes around the room, including mine.
So much to learn and absorb
It’s difficult to encapsulate the entirety of my learning throughout this conference. I listened to talks covering a spectrum of other topics including misconceptions about exercise for individuals living with a neuromuscular disease, assistive technology and new programs for young adults transitioning into independent living. This last topic is of significant personal interest to me, since I am living proof that it’s possible to live a productive and independent life as an adult with a muscle-debilitating disease. It’s important to me in my role as National Goodwill Ambassador to help MDA champion new programs for people like me learning to navigate the complexities of a self-directed and fulfilling life. I will be working closely with Alex McArthur, an ambitious young woman MDA brought on to develop and implement a much-needed transitional program for the organization. Alex, like me, grew up with MDA, and she knows what it means to transition from pediatric care to independent adulthood. I’m so excited about the change she’ll help bring to the organization.
A chance to see the sites, too
My time at the MDA Clinical Conference was not all work, though. If I played a scientist all week at the conference, you know I needed a chance to play tourist, too. We took the Metro from Arlington to Washington, D.C., and adventured around the National Mall, lounging with Lincoln and admiring the home of my dear friends POTUS and FLOTUS. Between you and me, it looks waaaaay bigger on Scandal, but don’t tell them I said that! Unfortunately, Michelle and Barack had dinner plans in Havana, but I did get a chance to witness the motorcade as they left the White House on their historic trip to Cuba. Unfortunately, the parade of 30 vehicles snarled traffic and prevented us from heading back to our hotel after a long day of sightseeing. And people think I’m high maintenance.
