Great Strides is the biggest annual fundraiser held by the Cystic Fibrosis Foundation, with 5k walks smattered all across the country, mostly in the spring. While I will always prefer the "Pay to Party" fundraising model, both as an organizer and supporter, I feel compelled to support Great Strides as well due to the fact that the events have virtually no overhead, and roughly 96 cents of every dollar donated to Great Strides specifically goes directly to the research that will hopefully extend, or at least improve, my life and the lives of the other 30,000+ Americans living with CF every day.
Below, I've reprinted my fundraising appeal featured on my fundraising website. If you are so inclined, I would be incredibly grateful if you chose to skip a coffee run or a cocktail and make a donation to my campaign instead. Donations can be made by visiting http://www.cff.org/Great_Strides/JNLink. Regardless of whether you contribute, feel free to post the link on facebook, tweet about it, or get it tattooed on your forearm. (Kidding. Please don't do that.) Raising money is great, but for me and my crazy, raising awareness is pretty sweet, too. Thanks!
My name is Jessica Link, and I am a proud twenty-five years old. I was born with Cystic Fibrosis, a genetic chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). In the 1950s, few children with cystic fibrosis lived to attend elementary school. Due to the nature of the complications leading to my diagnosis at birth, my parents were told not to expect me to survive beyond early adolescence. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF, and nearly half of the patient population are adults. Many people with the disease can now reasonably expect to live into their 30s, 40s and beyond.
Nevertheless, “surviving” is unfortunately not always synonymous with “thriving”. Make no mistake; most of the CF community - patients, parents, family, friends, and yes, spouses and children - are elated with the rapid development and efficacy of many new treatments made available in the last several years. If it seems like I say that often, it isn’t because it’s the party line; it’s because there truly have been that many more brand-new approvals and breakthroughs than since I last said so! However, the challenges of adulthood with Cystic Fibrosis can often be eclipsed by the excitement over new progress - ironically, diminishing the urgency and import of continuing to fund the very progress it originally inspired.
Regrettably, I used to wrap up many of my letters, speeches, and other fundraising pleas with a claim to the effect of, “if I could go back and change things, I would not change my diagnosis, as it has made me the person I am and allowed me to develop a tenacity I might not have otherwise.” With a little more life experience, and a lot more experience with the ugly underbelly of this disease, I now feel that the only way one can say that with complete sincerity, and without disclaimer, is if CF has not yet taken from you something that you value immensely. As a patient myself, and a friend and unabashed fan of several other phenomenal CFer’s with much greater challenges and grace with which to face them than I... I take it back.
There is no denying that CF had quite the role in developing my fighter’s spirit, my insatiable curiosity, my healthy suspicion of authority for authority’s sake, and my quick wit - undeterred by all but the strongest of sedation. I am convinced that my ability to articulate my thoughts, my obsession with meaningful communication, and my relative fearlessness in addressing my superiors as actual human beings were kindled early in my education, and ignited by the frequent practice necessitated by my CF experience.
And I’m grateful, and proud, to have survived what I have, and to have become who I’ve become. However, I freely and painfully admit that the sharp edges of CF that helped hone the aforementioned skills and abilities, has undeniably severed many of the opportunities that they have afforded me. The same has happened to many of my friends. The Columbia law grad working for a Wall Street firm, sidelined and put on the transplant list within a year or so of graduation. The gracious young man currently recovering from his second double-lung transplant - in his early thirties. The mother of two, healthier than I have been since high school, who was perfectly fine, and just about as happy as she had ever been - three weeks later, her husband and preschoolers had to say goodbye. She caught the flu. For the dozens of friends I have lost, the hundreds lost by friends of friends, in the last year or so alone - all too quickly, and all too young - if I could, I absolutely, 110% would change it.
It isn’t OK. Thankfully, it doesn’t have to be this way, and finally, there is hope for my generation that we are not only saving the kids coming behind us, but our peers and ourselves. This time, as my friend Piper loves to say, “We are the people we’re saving.” But we can’t do it alone, and more so than ever - seriously, EVER - time is of the essence. There are actually more projects in the pipeline for development than the CFF can afford to support for the first time in the organization’s history. And it’s not because support has dropped off; it’s because research is moving full steam ahead, faster than finances can keep up. And that is why your support is vital.
Without the support of the Cystic Fibrosis Foundation, many great ideas are forced to remain just that – ideas. It was the CFF who funded and pushed for development of the idea for Kalydeco, the first-of-its-kind drug approved by the FDA just weeks ago, that successfully targets and corrects the root problem caused by faulty CF genes, rather than preventing later damage or treating damage already done. It is the elation at the fact that this drug has, without exaggeration, revolutionized the lives of those for whom it works, and the tandem, sobering disappointment that it is effective for a mere 4% of the CF population that has the targeted gene, that inspires hope and spurs researchers to further action. It is through research grants and funding that allow many of these bright minds in CF research and medicine to put into practice their growing awareness of how CF works – and thus improving the quality, and often the very length of life for CF patients like me. Furthermore, some of the modalities and concepts developed for CF treatment have been applicable in the treatment of other chronic diseases, and the ways in which the CFF goes about inspiring and funding their development have upended the ways in which many other medical nonprofits now go about green-lighting their own projects. So in supporting the CFF, you aren’t just helping CFer’s, you’re advancing medical science and the way it is funded at large. For more information about Cystic Fibrosis or the work of the CFF, go to www.cff.org.
GREAT STRIDES is the Cystic Fibrosis Foundation's largest and most successful national fund-raising event. This year, I'm walking in the GREAT STRIDES walk at the 2012 Lake Norman - Jetton Park, Waterfront Hall walk on Saturday, May 19, 2012.
All you have to do to be a part of this great effort is click on the “Click to Donate” button below. Especially in these tight economic times, it’s important for you to know that your money is being used as resourcefully as possible. You can be confident that your gift will be used efficiently and effectively, as nearly 90 cents of every dollar of revenue raised is available for investment in vital CF programs to support research, care and education. The CFF has even been named a Money Magazine “Top Charity for Your Money.” As always, all donations are 100% tax-deductible, and any amount you can give is a valuable and appreciated step toward progress. If you are interested in walking, feel free to email me at jnlink@gmail.com for more information, or go ahead and sign up by clicking the “Join My Team” button below - I hereby guarantee it will be a fabulous time!
As for our team name, Spiritus - it is the Latin root for “inspire”, both in the literal sense, “to breathe”, and in the more familiar “to stimulate”, either energies and ideals or action and change. The serendipity of such a strong linguistic root bearing both a literal, visceral meaning and a simple figurative reminder of life’s purpose was just too good for this word nerd to pass up! Ralph Waldo Emerson said, “To know that even one life has breathed easier because you have lived, this is to have succeeded.” I hope that you will consider helping our team succeed in our endeavor to help other lives affected by CF “breathe easier.”
Thank you so much for your continued support of this cause that means so much to me and my family. We appreciate it more than you can know. Together, we CAN make CF stand for Cure Found!
Gratefully,
Jessica
