I was recently asked an interesting question by the wonderful team at Rocket Pharma. At this particular event, I was encouraged to share my Fanconi anemia (FA) story in detail, hopefully to elucidate just how impactful and welcomed their work on this disease really is. Working in the pharmaceutical industry myself, I understand how easy it can be to lose sight of the reason, motivation, and meaning for the work when a personal connection is absent. So, it was my pleasure to share my experiences and thoughts with them to connect their work to the purpose. I do not know what my expectations were or what theirs may have been, but I was certainly not expecting to be the one to walk away with such a thought-provoking idea:
This question stopped me mid-thought as I struggled for what I hoped was a satisfactory and complete answer. I failed to find what I felt to be the right response, as I had never thought about the community in such a manner. So, over the next few weeks, I devoted a few spare minutes each day to reviewing many of the interactions I have had with amazing people in the Fanconi anemia space.
I thought of my first FA friend, the many encounters I have shared with the FARF staff, board members, families, and all the friends I have made since rejoining the community a few years ago.
I thought back on this past summer at Camp Sunshine and the moments I was able to spend with the families, and especially the children possess such joy, you can’t help but smile. I think of the late night spent with my fellow inaugural FAdult Council members at Camp, and the renewed support and love I could never hope to find anywhere else if I searched for eternity.
I thought of each time I spoke with Lynn Frohnmayer; how she always took the time to inquire of my health and discuss the mundane pieces of life that fall through the cracks of all other conversations.
I remembered the many researchers I interact with who have dedicated not just a career and time to our disease, but also their lives to the betterment of ours. While I could expand on these dealings, how they impacted me and how I recall them when I require motivation - I think it suffices to summarize.
This is the outcome I have arrived at: I cannot pinpoint “the most important” person to me in this increasingly special community – it is quite impossible for me to fathom what my life would be like if I hadn’t met any of them.
I think of all these people with a fondness I reserve for my closest friends and family. These people have become part of my life – a part I would be loath to have never known. Although I may not always be in continuous contact with everyone, I know the support I need will always be freely given.
Simply put, the most important person in the community is the person I meet next. This is the person in whom I will find a new source of hope, inspiration, and boundless joy. This is the person who reaffirms the difficult decision to reintegrate myself into this world – even knowing all the pain and sorrow intertwined almost inseparably with everyone’s life touched by this affliction. Of course, there are negative aspects of this disease serving as near-constant reminders of the difficulties each of us face, but I believe these reminders to be a source of strength and fortitude that most people will never know or understand. This strength is only overshadowed by the love and friendship innately possessed and displayed by this community.
I know Matt Pearl said, “FA means Fight Always” and most everyone takes that to mean fight against FA, but I prefer how Kyle Tanner explains it (Sorry, Matt). Fighting against FA would be to fight myself and it is a fight I cannot win. I embrace all that comes with the disease because it has given so much more than it could possibly take away. I fight to find the benefits hidden in the struggle. The benefits are not always obvious, and the time needed to recognize they exist can be arduous, but they do exist. They are there when you need them the most. The only reminder I ever need is receiving a message asking, “How are you?” because I know it is sincerely heartfelt and not the customary cursory pleasantry exchanged by an indifferent passerby.
This is the community that has shaped my path forward and taught me the determination to keep on. I am devoting my career, wherever it may take me, to advancing the science to treat and cure FA, and also advocate for the importance of not just the science, but also the people behind it.
This community is where I truly discovered the passion for the work I do each day. Science is painstakingly slow and frustrating, but the most important part of science is perseverance. The desire to keep with it stems from the resilience I have found in everyone in the FA community.
This is the community I am forever in awe of. The strength possessed by each member of this community inspires me to continue when I feel lost and hopeless.
And so, how could I ever point to an individual? It is all of you. You are the most important connection I have in this community. Because without you, there is no community.
Special thanks to Lynn and Dave Frohnmayer for starting this and bringing us together.
I love you all.