Today kicked off with a bang as Angela Wrigglesworth took to the stage and shared her experiences and triumphs with us. In relaying how, when she was a child, her clinician used to talk to her about life with SMA using his best Donald Duck impersonation, she taught a room full of doctors what it means to speak to a patient at their level. In telling us about having to be put into a medically induced coma, she reminded us all about the criticality of proper nutrition. In talking about using her wheelchair to tow a car, she made us rethink what it means to be strong. She came, she spoke, she conquered.
In listening to the remainder of the sessions, and in reflecting on the last several days, it is clear to me that bringing members of the scientific community together with clinic teams is pure genius. Indeed, the MDA has developed a winning formula.
By marrying the academic and practicing arms of MDA’s clinical communities, the Association is facilitating the adoption of a holistic (all-encompassing) approach to meeting the needs of individuals with neuromuscular diseases.
This conference has really illustrated that success is achieved by treating a patient’s medical, emotional, and sometimes even social needs in a one-stop-shop clinical setting.
MDA is proving that if you invest in putting the right tools into the hands of the right artists (e.g., researchers, neurologists, clinicians, etc.) you can build, edify and develop something beautiful.
And that, my friends, is how you make the world a better place for everyone with, or impacted by, neuromuscular diseases.