I have been involved with the Friends of Patients at the NIH for several years, as a member of the Board of Directors and as a volunteer. This year, the role of this organization has become more important than ever before, with so much uncertainty about the future of funding for the clinical research at the NIH – which has led to the discovery of chemotherapy, immunotherapy, antiretrovirals and countless other cures and treatments that have touched so many of our lives.
One of the unfortunate casualties of this uncertain environment for NIH research is that the patients who give their lives to these experimental trials – often even after they have lost all hope for their own recovery – end up carrying the burden of paying for their own airfare, travel costs, and lodging, with diminishing resources to support them at a time when their healing is crucial to the success of the research. Our charity helps these patients by providing support that ranges from emergency funds to cover a month of their mortgage so they can avoid going into bankruptcy to covering the cost of a pair of special goggles to help offset the excruciating eye pain associated with a new radiation treatment for a teenage cancer patient, to even organizing housing in Bethesda or a night out for a family who may not have many more nights together again. I have met many of these patients and the one word I can use for every single one of them is brave. They are truly extraordinary, and they are doing a great service for all of us.
Especially at this moment in time, I have been looking for ways to do my part and help ensure that this extraordinary work can continue. Meanwhile, I found myself booking a flight to travel to Seattle this Summer to be with my mother – the bravest woman in my life who has been a patient herself for decades – during an important operation. My mom has been in and out of hospitals, operating rooms and the ICU since my childhood, battling an aortic aneurysm, melanoma and diverticulitis all while fighting the excruciating effects of Multiple Sclerosis.
But anyone who knows her knows this is not what defines her. Mom is the most relentless optimist on the planet, and that is what enabled her to create and grow a school 35 years ago that makes it possible for kids who learn differently – kids who were told they may never make it to college – to achieve dreams they never even knew they had. Mom has changed countless lives, and she has taught me the power of sheer intention, strong will, and compassion. She loves the phrase “spark the dream, ignite the drive” and that is precisely what she has done for everyone in her orbit, her entire life.
She may not be at the NIH, but my Mom is as brave as every one of the patients we support, and I want to honor her for it. This is why, as I prepare to travel to Seattle for this next round of her ongoing patient battle next month, I am planning to fundraise $5,000 in honor of my mother for the Friends of Patients at the NIH, so that while I sit with her in the hospital, I know we are both making it possible for so many other families to do exactly the same thing – as they fight together for future medical breakthroughs.
Check out my fundraising page to see our progress against my $5,000 goal, and consider joining me in celebrating the woman who is 150% responsible for making me into who I am. I can think of few better ways to honor – and extend – her impact on this world.
Catlin O’Shaughnessy Coffrin
Global Prairie
