I also want to thank the rare disease leaders who pioneered the path forward and showed me that I could turn my hope into life-saving progress: Sharon Terry, Abbey Meyers, Josh Sommer, Emily Kramer-Golinkoff, Nicole Boice, Peter Saltonstall, and Drs. Phil Reilly, Leslie Gordon, Francis Collins, Stephen Groft, and Emil Kakkis. I also want to thank Tania Simoncelli, Samantha Scovanner, and Anne Claiborne for their commitment to rare disease patients and for being the most incredible partners in our joint mission to advance life-saving therapies for all rare disease patients. Chris and Gena, your relentless battle with ALS and unconditional love for one another inspires me every day and motivates me to continue to expand our work to other rare diseases in need of cures.
I am thankful for each of the doctors and nurses who cared for me and gave me hope for my future, including Clarice Dard, Norman Swope, and Drs. Frits van Rhee; Tom Uldrick, Adam Cohen, Alison Loren, Peter Voorhees, Preethi Thomas, Jeff Crane, Louis Diehl, and Jon Gockerman.
Reflecting on one’s life and writing a memoir is both incredibly challenging and deeply rewarding. I am so thankful for the individuals who helped make this happen. William Callahan, thank you for always pushing me to unpack my emotions and for your guidance and keen insights in bringing my story to life. Richard Pine, thank you for your encouragement and visionary leadership of this entire process. You are one of a kind. Marnie Cochran, thank you for pouring your heart into this book and for making it so much fun along the way. Thank you for welcoming me into the Ballantine and Penguin Random House families with such open arms. Grant, Ben, Ryan, Lisa, Gena, and Caitlin, you all gave such great advice and feedback on drafts. It is because of these efforts that I have a legacy to pass on to my daughter should I not be here to tell her these stories myself.
Last, I want to thank you for reading this book! Each of us has challenges that we’re facing. I hope you’ll reflect on and find your “Castleman disease” or that thing that you’re hoping for and passionate about, that motivates and inspires you. Something that will change the world, your world, or a loved one’s world for the better. And if it happens to be championing Castleman disease, then that’s great too (but not required)! We all have the tools, though some may need sharpening, to chase after and even solve these problems.
Turning hope into action isn’t ever easy, and the fruits of such labor take time to develop. But you just have to start doing it. Start small. Do something. Anything you can to get closer to what you’re hoping for, even if it seems like it’s just routine paperwork. I hope you will never be mistaken for your father’s pregnant wife, but if you are, try to use humor and positivity to get over that low point and the others we are all destined to face. And don’t let the naysayer hobgoblins in the back of your mind stop you from getting started or from questioning the way things are done. My greatest regrets on my deathbed were actions I didn’t take. Don’t let those same regrets be yours. Think it, do it. And make every second count, because the truth is: We’re all in overtime.
ABOUT THE AUTHOR
DAVID FAJGENBAUM (pronounced FAY-gen-bomb), MD, MBA, MSc, is one of the youngest individuals to be appointed to the faculty at the Perelman School of Medicine of the University of Pennsylvania. Cofounder and executive director of the Castleman Disease Collaborative Network (CDCN) and an NIH-funded physician-scientist, he has dedicated his life to discovering new treatments and cures for deadly disorders like Castleman disease, which he was diagnosed with during medical school. He is in the top 1 percent of youngest grant awardees of an R01, one of the most competitive and sought-after grants in all of biomedical research. Dr. Fajgenbaum has been recognized on the Forbes 30 Under 30 healthcare list, as a top healthcare leader by Becker’s Hospital Review, and one of the youngest people ever elected a fellow of the College of Physicians of Philadelphia, the nation’s oldest medical society. He was one of three recipients—including Vice President Joe Biden—of a 2016 Atlas Award from the World Affairs Council of Philadelphia. Winner of the RARE Champion of Hope science award, Dr. Fajgenbaum has been profiled in a cover story by The New York Times as well as by Reader’s Digest, Science, and the Today show. Dr. Fajgenbaum earned a BS from Georgetown University magna cum laude with honors and distinction, an MSc from the University of Oxford, an MD from the University of Pennsylvania School of Medicine, and an MBA from the Wharton School. He is a former Division I college quarterback, state-champion weight lifter, and cofounder of a national grief support network.
Facebook.com/davidfajgenbaum or fb.me/davidfajgenbaum
Twitter: @DavidFajgenbaum
I hope that all Castleman disease patients and their loved ones will visit the Castleman Disease Collaborative Network website to learn more about the disease, opportunities to connect with other patients,and ways to contribute samples and data to the fight at www.CDCN.org
Anyone who is interested in donating to this life-saving research should also visit www.CDCN.org
You can email [email protected] for more information.
If you are a rare disease patient looking for guidance, please email [email protected]
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Chasing My Cure Page 24