Sherry Cagan is a patient advocate and facilitator whose voice has been a driving force for the millions debilitated with Lyme disease. In 2015, Sherry and her husband launched a 501(c)(3) non-profit organization based in Silicon Valley, Stand4Lyme Foundation, joining forces with Stanford scientists, "Making Lyme History,” paving a medical path to wellness for patients at all stages of Lyme disease, with the goal to end unnecessary prolonged suffering of millions. Through Stand4Lyme Foundation's partnership with the Stanford School of Medicine they are able to leverage Stanford’s proven track record of translating scientific discovery into solutions for patients with complex diseases. Through direct contributions to the Stanford/Stand4Lyme Fund, donors have the opportunity to bring Lyme disease research and development into the 21st Century.
Stand4Lyme has an initial goal to raise $5 million, which will fund for five years the Stanford Lyme Disease Working Group, which the Cagans worked to initiate.. As this fund grows, it will significantly increase the intellectual and scientific power of the Stanford Lyme Working Group, which engages two dozen esteemed scientists in over ten different disciplines and departments, as well as collaborating with other leading institutions, such as Harvard, Johns Hopkins and Columbia. This collaboration holds great potential to bring a cure.
Sherry Cagan chaired and hosted three benefit concerts in association with the Bay Area Lyme Foundation in 2013, 2014 and 2015 at her beautiful home in Silicon Valley, which helped raise over $1.5M for Lyme Disease research. With amazing dedication, she will host her fourth benefit concert on behalf of the Stand4Lyme Foundation on May 22, 2016 featuring KC and the Sunshine Band, with Yolanda Hadid, Chynna Phillips and Billy Baldwin as Honorary Chairs. Guests will have a rare opportunity to talk with many of the world’s top scholars and researchers about their scientific insights on Lyme disease. The concert will bring together 400 guests from around the world, including executives from Fortune 500 and pharmaceutical companies, some of Silicon Valley’s most dynamic business and community leaders, athletes, and venture capitalists. Also taking a STAND are supporting organizations, along with individuals and families with Lyme disease. Stand4Lyme is also initiating the LYME100® leaders program for donors who take a supportive STAND by pledging $10,000 or more per year for five years to invest in solutions. For herself, her daughters, her mother, and the millions who continue to struggle with this persistent infectious disease, Sherry is actively dedicated to helping accelerate a cure and “making Lyme history.”
If you would like more information about Stand4Lyme or Catalyst 4 The Cure Concert, you can find it here: www.Stand4Lyme.org
Read the interview below to find out more about Sherry.
Why did you found the Stand4Lyme Foundation, and what do you hope it will accomplish?
My husband, Laird, and I founded the Stand4Lyme Foundation to expedite a cure for Lyme disease, which has been woefully underfunded worldwide. We are highly motivated, as not only have I been continuously struggling with lingering symptoms and side effects after treatment for Lyme disease, but both our daughters are also presently undergoing extensive IV Lyme treatment. And there are millions that remain debilitated with no medical options. This is unacceptable, Lyme is a fixable problem, but not without our help. I am dedicated to accelerating a cure for Lyme disease.
What is your personal history with Lyme disease?
A tick bit me in 2005, but as a friend said, “That Tick Bit the Wrong Chick.” I have continued to struggle for a decade. I do hope to draw from my own near-death experience with Lyme disease as a catalyst to accelerate a reliable diagnostic test and a cure, paving a medical path to wellness for patients at all stages of Lyme disease, and “Making Lyme History.”
I became violently ill after being bit, but I was told I was not at risk for Lyme in CA, which we now know is not true after Stanford conducted a tick study in the Bay Area. After one health crisis after another, I saw about 50 doctors, being misdiagnosed with everything from MS to cancer before the DNA of the Lyme-causing bacterium, Borrelia burgdorfori, was found with a positive PCR test. I found myself in the ER going into shock before I started treatment, because I did not believe a tick could make me that sick. (I am a country girl and grew up around livestock.) Long-term treatment was against my belief, but when I stopped, I began heading toward a wheelchair. I wound up staying on antibiotic treatment for years, seven months of which was IV. Before beginning treatment I was a shadow of my former self, dropping down to 93 lbs. But thank goodness my body responded, and after taking an additional year to recover from the treatment I was able to drive and get out again. It has been torment to watch the toll Lyme has taken on my daughters both physically and emotionally, but they are amazingly resilient, having strong spirits and incredible discipline.
My personal Lyme story can be found on SherryCagan.com
How has your personal history motivated you to pursue charitable work?
Although there are few scientific answers and options available, we must make medical help available for all Lyme patients, not for just those who have the resources to bear the exorbitant out-of-pocket costs of treatments. This is unconscionable.
How can Lyme disease patients best be served by advocacy?
Advocacy helps to frame our struggles, and gives them purpose. Our struggles will not have gone in vain if we can help prevent the suffering of even one other person or family from going through what we have had to endure. I encourage others to take a STAND, as we need everyone’s strengths.
Have you recovered from Lyme disease? To what do you attribute your recovery?
Unfortunately, Lyme disease is something I have had to continually manage. Though I am grateful to function at about 75% of my old self, I do not have to look far to see that things can be worse. No fooling, Lyme is not for wussies! Though with treatment I have improved, the current therapeutics do not come without their own host of problems. We must accelerate better solutions. But for now, to stay functioning, I do everything I can to support my immune system and avoid all that may burden it. I do have to go back on antibiotics occasionally to keep the bacterium under control and the symptoms at bay.I have had to adjust my lifestyle, which in many ways is a good thing; it helps keep my focus on what is important.