On the surface, the Portraits of Courage Celebration hosted by the National Organization of Rare Disorders (NORD) appeared to be your usual awards celebration—but the special reason that brought everyone together was far from usual.
NORD is a unique federation of voluntary health organizations dedicated to helping people with rare diseases and assisting the institutions that serve them. Emotions ran high with many of the presenters and award recipients reaching for tissues as they spoke about the work they and NORD do to help people with rare diseases. It was even more emotional when they talked about “why” they do this work. Many do it for their children, spouses, siblings, patients, or even themselves — all of whom face serious, and often life-threatening, rare diseases.
One of the most memorable moments (this was a multi-tissue moment!) was when Representative Fred Upton of Michigan was presented a handmade medal from two beautiful young sisters, ages 5 and 6, who have multiple system atrophy. You could see and genuinely “feel” the devotion of all of those at the event to those with rare diseases. It was humbling to watch and really brought to life the work that we do at GSK – in all areas – but especially where there is a limited patient population with few (and in some cases, zero) treatments available.
NORD recognized two Members of Congress, patient advocates, and researchers for their work and commitment to a range of rare disorders. We were proud as GSK was honored with a Partners in Progress Corporate Award for two of our products approved in 2013 for metastatic melanoma. Dr. Jeff Legos, GSK’s Vice President, Medicine Development Leader shared, “As I reflect on what this milestone means to me as the Medical Leader of this program, making a medicine is one of the greatest accomplishments but making a difference for patients with metastatic melanoma is the greatest personal reward.”
There could not be a more appropriate a time for us to receive this award given that we are in the middle of May which is Melanoma/Skin Cancer Detection and Prevention Month. Metastatic melanoma is a serious, life-threatening disease; in fact, one in two patients worldwide with the disease is only expected to survive for one year after diagnosis. This recognition month is a time for us to reflect on our patients and how the work that we do is about them and fulfilling GSK’s mission to help people do more, feel better and live longer.