This is our appreciation corner where we honor special activists and volunteers who have gone the extra mile to help us make a difference with our outreach. We could not achieve our goals without your unflagging commitment and creativity. Thank you!
Cynthia Conklin, Sharon, CT
(March 2010)
Having suffered since 1991 with ill-defined autoimmune symptoms, it wasn’t until 2000 that the symptoms and the lab work combined for a clear diagnosis of neurologic Lyme disease. While Cynthia’s life in nursing and catering had been dramatically diminished due to Lyme, her wake-up call came in the summer of 2009 when a friend accompanied her to a screening of UNDER OUR SKIN. Energized for the first time in years, Cynthia networked with a local movie theater, the Moviehouse in Millerton, NY, for a special screening. With two packed theaters the screening grabbed the attention of the community in an unprecedented way. Cynthia also helped coordinate a screening of the film and speaking engagement by filmmaker Andy Abrahams Wilson at the Hotchkiss School, a prestigious boarding school in Lakeville, CT, attended by 600 students and faculty. Since then, other local organizations are reaching out to Cynthia for her assistance. In addition, Cynthia is receiving tremendous interest from local physicians newly interested in the topic. With the desire to raise awareness “one physician or health care practitioner at a time,” Cynthia is using UNDER OUR SKIN as a tool of awareness in her professional and personal life, and has taken a giant leap forward in raising Lyme awareness in her community.
Catherine Kleine, Denver, CO
(February 2010)
Catherine became involved with Lyme disease awareness when she was misdiagnosed with MS in 2008. After approaching her doctor with information about Lyme disease and despite being told that one cannot get Lyme disease in Colorado, Catherine was eventually correctly diagnosed with Lyme disease. Determined to “pay it forward” to other Lyme sufferers, Catherine, with the help of a long time Colorado Lyme advocate, co-created the Mile High Lyme Support Group. The support group provides free support for anyone in Colorado living with Lyme and receives, on average, up to five new members at each monthly meeting. Catherine’s involvement with UNDER OUR SKIN began the moment she saw the film and decided a wider audience in Colorado also needed to see the film. Catherine reached out to several local theaters and eventually made contact with the Programming Manager for the Denver Film Society, which owns and operates the Starz FilmCenter in Denver. The Programming Manager also saw the importance of the film and agreed to screen the film at the theater for a weekend run in November. Catherine’s also contacted Dr. David Martz, one of the subjects in UNDER OUR SKIN, to see if he’d be willing to participate in a Q&A session after the film. Even more determined to make the screening a successful event, Catherine posted flyers around town, distributed postcards and Take Action pamphlets to the local pharmacy, and various doctors' offices. Catherine went so far as to stand outside her local grocery store for several hours handing out hundreds of UNDER OUR SKIN postcards to customers, urging them to attend the Denver screening. Because of Catherine's efforts, UNDER OUR SKIN and Lyme awareness have gotten a big boost in the mile-high city and in all of Colorado.
Robin Krop, San Francisco, CA
(January 2010)
Robin's Lyme activism began immediately upon her discovery in 2006 that she had Lyme disease, following a known tick bite in Big Sur, California 25 years prior. In 2008, Robin brought a group of Lyme activists to San Francisco City Hall. The group met with the Mayor's office and all Supervisors’ offices, which subsequently led to a board commendation and declaration of May as Lyme Disease Awareness Month in San Francisco. Robin has testified about Lyme disease before the San Francisco Board of Supervisors and continues to do so as more people contract Lyme disease and co-infections in San Francisco.
Robin believes in the power of knowledge and educates individuals about Lyme disease on a daily basis. Robin communicates with local healthcare providers, city departments, and health organizations to stress the importance of Lyme disease prevention. She has also attended and testified at state Lyme Disease Advisory Committee meetings. Robin currently facilitates a monthly support/advocacy group, San Francisco Support, Education and Advocacy for Lyme (SF SEAL).
Robin is a great fan of UNDER OUR SKIN and helped tremendously to publicize the film for the San Francisco Bay Area theatrical run. Robin recently nominated Andy Abrahams Wilson as a “Changemaker” at the Change.org web site, which “aims to identify activists, elected officials, authors, bloggers, actors and thought leaders who have the greatest capacity to spark change on issues of importance.” Thanks to Robin’s creative initiative, Andy’s “changemaker” page (and mission for change) has been viewed more often than Bono’s, Angelina Jolie’s and other well known activist luminaries.
Dorothy Leland, Davis, CA
(December 2009)
Dorothy was thrust into the Lyme world in 2005, when her daughter became severely disabled by the disease. While her daughter slept, Dorothy would often scour the internet, seeking any information that might help.
“I rapidly learned that Lyme wasn’t just a medical problem, but a political one,” Dorothy recalls. “And the politics were harming my daughter’s chances of getting well. It made me feel both angry and helpless.”
In 2006, she learned that UNDER OUR SKIN was in production. “I felt a jolt of electricity go through my body,” she says. “Finally, here was a way to reach the masses, to get the word out about Lyme disease. Instead of feeling helpless, I felt energized.”
She emailed director Andy Wilson that she was “pretty good at using Google,” and offered to help. To her delight, he sent her a research project—sifting through on-line archives for Lyme news coverage. “It gave me great satisfaction to make even a small contribution to this important film.”
She marks that as the beginning of her Lyme activism. She’s now a support group leader in Sacramento and is very involved with CALDA, producing email newsletters, tending the group’s Facebook and Twitter accounts, and writing the “Touched by Lyme” blog.
“Along with other Lyme news, I keep our readers informed about what’s happening with UNDER OUR SKIN,” she says. “It’s amazing to see how this movie continues to inspire. Instead of being mired in helplessness, Lyme patients and their families have a rallying point. This movie is good medicine for the Lyme community.”
Jan Thietje, Forest Lake, MN
(November 2009)
Jan first became familiar with Lyme disease when her niece in Wisconsin became ill in 2005. After months of numerous physician visits and two visits to the Mayo clinic, her niece’s symptoms and testing did not provide a diagnosis. Jan’s persistent investigation brought her in touch with a Lyme literate physician, and a diagnosis of Lyme disease was finally made. Jan became active in the local support group, Minnesota Lyme Action Support Group (MLASG), and has since organized outreach programs that promote prevention and awareness. A film clip from UNDER OUR SKIN was shown to several Minnesota State Representatives and Senators this July and MLASG has been vigilant in creating a physician protection bill for Minnesota. To that end, Jan has developed a legislative committee that is working to educate Minnesotans on how to lobby their state legislators to support this bill that will be presented in the House and Senate in the next session. Jan believes that UNDER OUR SKIN has been the most effective way to bring patients’ struggles to the forefront and uses the film in her advocacy work. While UNDER OUR SKIN was still in production, Jan assisted in fundraising and has actively shown the film throughout Minnesota and Wisconsin for Lyme support and other community groups. Jan worked diligently to coordinate a theatrical screening of the film in Minneapolis. With Jan’s outreach and organizing efforts, UNDER OUR SKIN will screen November 8th through 10th at the Minnesota Film Arts Oak Street Cinema in Minneapolis.
Julia Wagner, North Wales, PA
(October 2009)
An accomplished businesswoman with an MBA, Julia was stricken with Lyme disease in 2005 a few years after moving her family out of Philadelphia and into the Pennsylvania suburbs, ironically, to escape the increasing dangers in their urban neighborhood. Julia's husband, Rev. Andreas Wagner, started talking to parishioners of his new suburban congregation, and what he found was shocking--so many families affected by strange "syndromes" and many with a history of a Lyme disease. Julia and all of her three children contracted the disease and it took almost a year to get a proper diagnosis and a road back to health. Motivated to act, Julia started the Montgomery County Lyme Disease Information and Support Group. Their efforts yielded a new Lyme bill sponsored by Pennsylvania State Senator Stewart Greenleaf. Along with this current legislative effort, Julia has coordinated six communityscreenings of UNDER OUR SKIN in the suburbs of Philadelphia, all with informational panel discussions. She has also been a key activist for the film's theatrica; screening in Bryn Mawr. In addition, Julia is using the film to coordinate in-service trainings for school nurses on the county level, and has an invitation to do so at the state Level. Julia told us, "UNDER OUR SKIN has been the catalyst for connecting Lyme patients with each other and driving change in our states and country. Giving visibility to the invisibleis the most powerful contribution that the film has accomplished. Your contributions have saved and changed many lives; we are forever in your debt.” And we are in debt to Julia's continuing support and service.
Sheila Statlender, Newton Centre, MA
(Sept. 2009)
Sheila is a clinical psychologist in private practice providing counseling and assistance with healthcare advocacy to a number of Lyme disease patients and their families. Sheila’s involvement with Lyme disease derives from difficult personal experience: all three of her children became seriously ill with tick-borne disease, yet it took years to obtain a correct diagnosis and appropriate treatment for them. Her family’s story is one of those included in “Cure Unknown: Inside the Lyme Epidemic.” Sheila has facilitated a number of discussions following UNDER OUR SKIN community screenings (initiated by Massachusetts Lyme disease advocate Donna Castle) which included outreach efforts to legislators and other healthcare professionals. She publicized and organized a series of conversations for the theatrical screenings at the Real Artways cinema in Hartford, CT and she participated in two programs organized in conjunction with the Boston Museum of Fine Arts screenings. These combined events attracted over 200 attendees, and provided the Boston community with vital information regarding Lyme disease and the controversy surrounding it.
Tom Robey, Severna Park, MD
(August 2009)
Tom was diagnosed with Lyme in 2007 and was "inspired to become an activist" when he saw UNDER OUR SKIN shortly after it was released in 2008. Tom lobbied the historic Senator Theater in Baltimore to show the film, and worked with local activists Laurie Gottlieb and Carol and Bob Siegmeister to make the week-long run a success. In addition to tireless promotional work for the film screenings, Tom also organized a Lyme awareness rally that was held outside of the theater on opening weekend.
Tom wrote to us, "Although we did not set any box office records, we were able to generate an incredible amount of publicity for the movie and for the subject of chronic Lyme disease." During the days leading up to and during the run, the film was a feature story on every Baltimore area television station, and received two separate hours of airplay on the local NPR radio station. In the backyard of Johns Hopkins University and not too far from IDSA headquarters in Virginia, the Baltimore theatrical run was strategically important, and Tom was instrumental in making it all happen.
Anne Corazza, San Diego, CA
(July 2009)
A week after the theatrical premiere in New York City, UNDER OUR SKIN opened in San Diego, Los Angeles, Santa Cruz and Washington, DC. Thanks to Anne Corazza and an amazing team of volunteers, San Diego topped box-office receipts from all these cities and the run was extended there for an additional week.
Anne Corazza and Noel Steiner, an "Organizing For America" volunteer, were responsible for getting UNDER OUR SKIN booked in San Diego by contacting the theater and convincing them to show the film. Anne worked tirelessly for weeks before the opening, placing thousands of postcards and flyers in libraries, grocery stores, coffee shops, physicians' offices, pharmacies, and more. She contacted major press outlets to do stories and coordinated a team of volunteers to help. She sent personal email blasts out to hundreds of people urging them to come to the theater and show their support. She also arranged for the director Andy Abrahams Wilson to speak at one of the screenings and scheduled additional speakers as well.
Anne has lived with chronic pain, cognitive impairment and other severe health problems for 30 years before only recently being diagnosed with chronic, late stage Lyme disease. As Anne said in a note to us: “This movie is finally my voice. This movie shares my story. This movie helps me explain to all my friends what I have been going through on a daily basis for a very long time. Most importantly, for the first time in my life I do not feel crazy." Anne wants to thank Noel, Maritza, Ruby, Susie, Emily, Robin, Steve, Diana, Edie, Len & Michelle for all their help in San Diego. Anne's activism is a model for grassroots efforts to promote the theatrical release of the film in communities across America.
Dawn Stept, State College, PA
(June 2009)
As UNDER OUR SKIN begins its theatrical release, we would like to recognize individuals who are going the extra mile to help ensure our awareness tour is a success. Dawn Stept has set the bar high by single-handedly organizing a major community/theatrical event on July 18th in her hometown, State College, PA, home to Penn State. Dawn will be buying out a limited quantity of seats for two of the three screenings at the historic State Theater and distributing tickets to doctors, professors, students and others who are interested. Dawn is committed to helping educate the local medical and academic community about Lyme disease, which is endemic in her community. Suffering for years from the disease, Dawn was forced to give-up her work as a child advocate attorney, university professor and instructor at the National Council of Juvenile and Family Court Judges. We are grateful that she is making the effort to organize this major event despite her struggle with the disease. Please help Dawn by spreading the word to people you know in Central Pennsylvania, or by following her example by organizing a theatrical event in your area.
Lauren Egler, Elgin, IL
(May 2009)
Lauren took local activism to the next level when she personally reached out to her then Illinois Senator Barack Obama in September 2008, encouraging him to attend the Capital Hill "Briefing on Lyme and Tick-Borne Diseases," sponsored by the National Capital Lyme Disease Association and featuring excerpts from UNDER OUR SKIN. President Obama was unable to attend personally, but he emailed Lauren, telling her he was aware of the film and stating that he is a co-sponsor of the Lyme and Tick-borne Disease Prevention, Education, and Research Act of 2007. He wrote: "I understand and share in your concerns regarding the constant misdiagnosis of this serious disease. Tick-borne diseases affect a significant percentage of the population and it is important that the federal government reach out and support preventative efforts." Misdiagnosed herself for years, Lauren was unable to find a Lyme literate physician in Chicago, so is forced to travel out of state for treatment. Lauren started a local support group, ChicagoLyme, and has held 19 community screenings of UNDER OUR SKIN to date. Lauren stands committed to help Chicago-area physicians get necessary Lyme training and patients get necessary treatment. She continues to use UNDER OUR SKIN as a vital means of bringing about this awareness and change.
Lisa Bevill, Nashville, TN
(April 2009)
Lisa is a successful singer from Nashville, best known for Christian radio hits such as No Condemnation, Only a Saviour and Hold On. While recording her latest album, When The Healing Comes, Lisa got sick with Lyme disease. She later joined a local Lyme support group where she was first introduced to UNDER OUR SKIN. Since then, Lisa has been in the trenches promoting the film on her website and in regular media appearances. To date these high-profile interviews have included: KEYL/KXDL with Cliff Cline, Lighthouse Radio with Dave DeAndrea, On The Home Stretch with Debbie Alan, and FOCUS with Anna Marie Ritter. Lisa’s website has an entire section devoted to Lyme disease where she shares her personal story and highlights UNDER OUR SKIN as must-see viewing. At every opportunity, Lisa is plugging for the film and spreading Lyme awareness. Her devotion to our film and her faith are exemplary. In an email to us, Lisa wrote, “I'm just so blessed to have been diagnosed close to when this movie started getting noticed—and I actually had a product in my hand that was proof I wasn't crazy.” We thank Lisa for raising her voice high to help spread hope and healing!
Liz Schmitz, Fayetteville, GA
(March 2009)
Liz contracted Lyme disease in her back yard in 1991. “Doctors told me Lyme isn’t in Georgia and that I had probable MS,” she tells us. “But I knew I was healthy prior to that tick bite.” Her five positive tests from five different labs proved her right. Liz co-founded the Georgia Lyme Disease Association in 1993 and had over 100 calls from Georgia patients that year. Years later she moved south of Atlanta where her husband got two bulls eye rashes after tick bites in their backyard. “Even today, most of our doctors and public health officials still don’t look for Lyme here,” says Liz. “They don’t realize, Georgia was fourth highest in the country for CDC-reported cases in 1989.” When UNDER OUR SKIN was released, she saw it as the perfect educational tool. She has organized eight community screenings in libraries and churches, and is busily booking more. Liz sent a DVD to U.S. Senator Johnny Isakson and met with his staff to discuss his support for Lyme Bill, S-1708, and she has motivated a top official at the GA Division of Public Health to host a screening there. “Everyone needs to see UNDER OUR SKIN. It’s such an important movie. We’ve needed this for years to show folks the number of illnesses linked with Lyme and the shocking lack of response from our public health officials.” Thanks, Liz, for all your work on our and the Lyme community’s behalf. Liz can be contacted at GeorgiaLyme@yahoo.com.
Monte & Gregg Skall, Washington, DC
(Jan/Feb 2009)
Monte and Gregg have been involved with Lyme disease ever since Monte was bitten by a deer tick in 1991. Along with other Lyme patients in the DC area, the coouple formed the National Capital Lyme and Tick-Borne Disease Association (NatCapLyme) in 2001. Gregg, a communications lawyer who worked in the White House under two presidents, serves as legal counsel to NatCapLyme, and brings his knowledge of Washington politics to the job. Monte and Gregg have been fierce advocates for people with Lyme disease and, recently, have championed our film as a way to bring awareness and change to Congress. Last fall, they organized a standing-room only luncheon briefing and film-clip screening in the Russell Senate Building, attended by Congress members and staffers. Through NatCapLyme, Monte and Gregg purchased (at reduced cost) enough UNDER OUR SKIN DVDs to give to every member of Congress! They also sponsored a sold-out, free community screening at Washington’s historic Avalon Theater. We honor Monte and Gregg Skall for their hard work and creative efforts to use UNDER OUR SKIN to bring change to the highest levels of government.
Doug Fearn, West Chester, PA
(December 2008)
Doug is President of the Lyme Disease Association of Southeastern Pennsylvania, an organization he founded in 2003. He was first officially diagnosed with Lyme disease in 1994, but almost certainly was infected long before. Both his wife and daughter have also been diagnosed. He lives in the semi-rural area of Chester County, PA where Lyme disease is very prevalent. In 2004, he designed a study that surveyed the population of a small township in Chester County that concluded that nearly a quarter of the population has been diagnosed and treated for Lyme disease, and a third of those people still suffered symptoms. The results were provided to the county and state health departments and presented at the 2004 ILADS conference. Doug has worked tirelessly as a Lyme activist, giving over 60 presentations to community groups, schools and businesses, and providing testimony to government agencies from the township to state level. Doug has organized five screenings of UNDER OUR SKIN to date--in Pennsylvania, Maryland, and Delaware, and has sold hundreds of DVDs for us. Thank you Doug for your hard work over the years, and for your steadfast support of UNDER OUR SKIN!
Leslie Wermers, Hopkins, MN (November 2008)
Leslie said to me during an interview at a Lyme disease memorial service in Iowa several years ago: "I have lost my life to this disease, but coming here will help me get it back. The strength you get from others--and by God we're getting more and more powerful--I will get my life back. And I will help others get their lives back. If I die tomorrow and I save one life, I'll die happy." Leslie died of complications from Lyme disease on November 2nd, 2008. UNDER OUR SKIN and the entire Lyme community has lost an important hero and friend. The first time I heard from Leslie was in an email several years ago: "You see, I had no will to live. I was so sick, with no answers and just wanted it to end. That was until I saw the film trailer. You have given me so much joy...Your documentary saved my life." Since then, Leslie became our greatest film fan and an activist whose sole goal was to help others avoid a fate she couldn't avoid herself. Leslie's was a familiar voice in our office--calling regularly to tell us how much she appreciated our work, and would do everything in her power to help us. And this selfless help was extended to so many people nationwide who were sick and struggling in solitude with the disease. Leslie and her sister Tracie founded the patient advocacy group Minnesota Lymefighters Advocacy. She would have day-long and late-night conversations with people across the country--many of whom she had never met--offering them words of encouragement, hope and affection. Leslie's passion for life was equaled only by her anger at the injustices wrought by Lyme ignorance and her dedication to help heal. We are eternally grateful for Leslie's support and friendship. See blog and readers' comments about Leslie.
Dan Osipow/iShares, San Francisco, CA
(October 2008)
We first met Dan at the film's premiere at the Tribeca Film Festival, where he was heading up the special film series "Behind the Screens: Conversations about Truth, Clarity and Responsibility." UNDER OUR SKIN was selected as one of three films in the series (and the only documentary) presented at the Director's Guild of America Theater in Manhattan. A marketing executive at iShares (a division of Barclays Global Investors), Dan's vision was to join iShares' business and investment strategy with a broader engagement in the world. Where better than in independent film could these values of truth, clarity and responsibility be modeled? Dan saw in UNDER OUR SKIN a perfect model for these ideas and an important issue that needed broader discussion. So when Dan returned to San Francisco, he organized a private screening for up to 400 employees of Barclays Global Investors, putting into real action the business practices that iShares promotes, and at the same time creating a link with the local arts community. iShares also gave a sizeable grant for the film's distribution and continues to stay engaged in the film's progress. We likewise recognize in Dan and iShares a powerful (yet rare) model for engaging corporate America in the needs and concerns of their communities and constituents, and for truly putting their money where there mouth is. Thank you Dan and iShares!
Kathleen has had Lyme disease since she was 14-years old. Undiagnosed for 20 years, she has suffered with chronic pain, thyroid and gastric problems, dizziness and other neurological symptoms. Labeled with chronic fatigue, fibromyalgia and MS, she finally received a Lyme diagnosis, only to discover her husband and daughter were also infected. In 2006, Kathleen started the Greenville Lyme Advocacy and Support Group. One of her many accomplishments has been to get "Lyme Disease Awareness Month" proclaimed by both the Governor of South Carolina and the Mayor of Greenville. In a state with supposedly no more than about 25 new cases of Lyme per year (per CDC statistics), Kathleen organized a community screening in Greenville, SC where over 100 people attended. Kathleen has been a dedicated suppporter of UNDER OUR SKIN from the beginning. Now, in addition to using the film as a forceful tool to educate her community, she has raised hundreds of dollars in donations for the film's outreach. Kathleen's tireless activist work, and gracious generosity even through illness, has earned her a place in our appreciation corner. Contact Kathleen.