We couldn’t do what we do without the dedication, passion, energy, and time of dedicated volunteers. If you are interested in volunteering your time to Bay Area Lyme Foundation or mounting your own fundraising effort, please send an email to firstname.lastname@example.org.
In addition to the many institutional partnerships and research collaborations, there are countless individuals whose contributions make our work possible. These champions for the cause are often patients themselves or caretakers of those suffering from Lyme disease. They are also advocates, activists, and donors who work valiantly in pursuit of better solutions for the Lyme community.
Colonel Nicole Malachowski – USAF, Ret., Lyme Disease Advocate
Our LymeAid® 2018 keynote speaker really knocked our socks off! Air Force Colonel Nicole Malachowski, the first female pilot ever chosen to fly in the elite Thunderbirds, was the keynote speaker at the 6th Annual LymeAid, benefiting Bay Area Lyme Foundation. She told the audience she will soon be permanently medically retired, due to “damage and ongoing effects of neurological tick-borne illness.” Due to Lyme disease, she is now “unfit for duty.”
“I wish to inspire people. I want someone to look at me and say, ‘because of you, I didn’t give up.’”
Mason Tenaglia – Advisor at Large
Pharmaceutical executive Mason Tenaglia became personally involved in Lyme research after watching his college-aged daughter suffer for years with the disease. Despite living just outside Boston, in the “heart of Lyme country” and among some of the best healthcare resources in the world, the family was shocked to learn how little investment had been put into understanding this debilitating illness and how many unanswered clinical questions remain.
Desperate to find answers their doctors could not provide, the family did their own research and began attending medical conferences to learn more. A chance encounter at a Bay Area Lyme-sponsored conference at Massachussetts General Hospital convinced Mason of the urgency of the cause and revealed an opportunity for him to play an even bigger role in helping accelerate the mission to stop Lyme. He joined our advisory board in 2016 with three goals in mind: (1) increasing visibility within the pharmaceutical industry; (2) facilitating more partnerships with the private sector; and (3) orchestrating more collaboration among a highly fractured Lyme community.
“There is the potential for Bay Area Lyme to really change the game for Lyme. By centralizing research funding in the way that has been done for many other mainstream illnesses, this organization can create capacity for more significant investment. And with Bay Area Lyme’s unique entrepreneurial modus, Bay Area Lyme can set the stage for game-changing breakthrough research and development.”
“It is shocking how many unanswered clinical questions there are and how much research needs to be done. I am excited about the work that Bay Area Lyme Foundation is doing to draw attention to Lyme and help focus research to improve the diagnosis and treatment of the disease.”
Shelby Anderson – Med Student on a Mission
One of these “champions for the cause” is Shelby Anderson, who came to our attention in 2014 when she took on a hero’s commitment to eating limes in a #Lime4Lyme campaign she and her classmates devised to help raise awareness for Lyme disease. The campaign, inspired by the ALS Ice Bucket Challenge, raised more than $4,000 on campus that first year and spread virally across the nation.
Very ill from the age of eight, Shelby suffered an inordinate number of misdiagnoses and then a barrage of symptoms throughout her 19-year battle with Lyme disease. IV antibiotics, PICC lines, and portacaths do not make for a “typical” childhood, but Shelby persevered. Often on multiple antibiotics, Shelby’s family also explored more experimental treatments, such as hyperbaric oxygen, alternative medicine, and umbilical cord stem cell therapy.
Eventually, a complicated treatment regimen got Shelby through school and into medical school. “Today, I still deal with the coinfections related to Lyme disease, and I cannot be sure whether or not Lyme is still in my body. I am thankful that I am healthy enough to have made it here.” Shelby went to medical school with a deep appreciation for the patient experience and a personal understanding of the essential connection between mind, body, and spirit in protecting and restoring health. She plans to use her experience to help listen carefully to patients and search for the clues to what’s really ailing them.
Shelby wasn’t always open to sharing her story. Angry and frustrated, she wanted to put the disease behind her, but she soon learned that sharing her story was important. “Lyme was a big part of why I wanted to go to medical school; and, once there, I saw an amazing opportunity to reach out and educate these future physicians.” Lyme is not like cancer. For many, it is an “invisible illness,” one where the outside appearance often masks how your body is being ravaged inside.
For Shelby, Lyme education is her new mission. Now a Bay Area Lyme ambassador, she wants to encourage doctors to be mindful in their clinical assessments. She hopes to make the public more knowledgeable so that they can recognize symptoms and advocate for themselves or, better yet, take the precautions to prevent infection and chronic illness. “Anybody can get this disease, and it is truly life-changing.”
“My hope is that one day Lyme disease will be treated quickly and correctly.”
Carolyn Margiotti – Community Crusader
Marin resident Carolyn Margiotti came to Bay Area Lyme looking for answers when her own physicians couldn’t provide them. Despite a negative diagnosis for Lyme after having found an engorged tick and suffering flu-like symptoms for months, Carolyn was sent home by doctors telling her there was nothing wrong—”she had always been so healthy so she would be fine.” As an active athlete (and Ironman triathlete!) who had been healthy all her life, Carolyn couldn’t figure out why her diagnosis wasn’t adding up.
Eventually diagnosed and treated, Carolyn began to get better, but she didn’t stop learning about Lyme. She began looking for an organization focused on funding research to find a cure and came across the Bay Area Lyme Foundation. She thought Bay Area Lyme stood out because “everything they do is so intelligent and straightforward—they avoid all the supposed controversy with the disease. It’s just a distraction from the task at hand.” She felt that the mission was right in line with her new goals of advocating within the community to spread awareness, which she believes is needed in order to create reliable diagnostics and find a cure. “There are a lot of good organizations out there, but Bay Area Lyme is data-based and focused. They avoid the controversy and are committed to using innovative tools to make progress.”
Carolyn turned to her community to share her story. “It became important to me that I share with others what I wish I had known. I’m a mom of young boys; I have a dog. I know how important family tick-check protocols are, and I want people to know more about this disease than they do. I don’t want others to have go through what I did.” She became an advocate and a resource in the community, pushing awareness out through mom’s groups and preschool networks and supporting Bay Area Lyme-funded community symposiums and speaker series. “We can’t be in denial. We need people to be aware of Lyme—for prevention and to support the development of a cure.”
“It’s an odd disease that seems to affect smart, active, otherwise healthy people. You’d think it would be easy to diagnose. There is too little awareness and not enough urgency. We need to change that.”
Elet Hall – Athlete Ambassador
The competitive free runner, Parkour instructor, and four-time American Ninja Warrior competitor is probably best known for his prowess on the ANW course, but he is just as passionate about the crusade against Lyme disease. Elet knows first-hand how debilitating the disease can be after struggling with the illness for several years. Extreme fatigue, numbness, nausea, joint pain, brain fog, loss of memory, and even facial paralysis almost sidelined the athlete before he was successfully diagnosed.
Treated and healthy again, Elet was eager to return to his favored training ground—the wilderness outside his door. With greater appreciation for the dangers of ticks and Lyme, he has partnered with Bay Area Lyme to help create more visibility for this often invisible illness and to champion the importance of prevention. The best defense against Lyme is an aggressive offense—one that starts with a commitment to regular tick-checks and vigilance.
“If I can help Bay Area Lyme make progress toward their goal of making Lyme easy to diagnose and simple to cure, that’s one less risk for everyone outdoors.”
Alix Mayer – Patient Advocate
Like Shelby and many Lyme patients, Alix was not always eager to share her Lyme story. Today she is an author and health coach advocate for Lyme patients. But that was not her first calling, Alix came to patient advocacy through a very trying personal journey of severe illness.
Infected in the early 1990s, Alix’s Lyme infection was later aggravated by travel vaccines, causing severe symptoms and eventually a medical leave from her job in high tech. Through years of illness and treatment—both traditional and more experimental—she learned much about this little-known disease and its many, many symptoms. Too ill to return to her former career, she turned to research and writing as a way to ease back in and eventually found it to be a channel for sharing what she had learned about Lyme.
One of the first stories to be featured as part of Bay Area Lyme’s “Faces of Lyme,” Alix also went on to found SpiroChicks, a collaborative blog with other Lyme patients to explore the horror and humor of Lyme disease. “There are many sides to this disease, and not everyone wants to talk about it. I respect Bay Area Lyme for taking those risks and advocating for better solutions.”
“Bay Area Lyme is fearless, willing to investigate novel approaches and even engage controversy when necessary.”