Who’s Behind the LymeLight

By wpengine

Guest Blogger: Nora Thomas, LymeLight Program Manager

When I saw the name LymeLight Foundation, I thought, that is a great name. I had recently recovered from a debilitating 5-year battle with Lyme disease which includes symptoms of crushing fatigue, severe widespread pain and memory loss common in many Lyme patients. I was thinking of starting a Lyme nonprofit after leaving my 20-year high tech career to leverage my technical background and give back in a tangible way to those suffering from Lyme disease. I have been honored to work for LymeLight Foundation for the past 2 years. I am the Program Manager overseeing the treatment grants process and have recently become a Board Member. I am rewarded daily by the feedback from our grant recipients and the Lyme community for the work that we are doing.

When our Co-Founders Phyllis and Scott Bedford’s daughter was diagnosed with Lyme disease in 2009, they had no understanding of the arduous and costly journey to restore their daughter’s health or that their insurance would not cover the cost of treatment. Grateful that they could afford the treatment for their daughter, they met many families who were not as fortunate. These families were often forced to decide between feeding and housing their families and treating their Lyme-infected children. As their daughter improved, Phyllis and Scott co-founded LymeLight Foundation based on the belief that this was a choice no parent should have to make.

Lyme disease is the fastest growing infectious disease in the world with at least 300,000 new cases each year in the U.S. alone.[1] Lyme disease is in all 50 states and is 1.5x more common than breast cancer and 6x more common than HIV.[2] Those infected with Lyme disease frequently go undiagnosed for months, even years, while their health mysteriously declines. When finally diagnosed, most families are left on their own to battle the disease often incurring enormous medical debt as most insurance companies do not cover the treatment of chronic Lyme disease.

LymeLight Foundation’s mission is to provide medical grants to Lyme-infected children and young adults who cannot pay for necessary medications and therapies, as well as, educating the public about the perils and prevention of Lyme disease. Our tagline is “Raising Hope for Families with Lyme”. When a child or children are sick, the whole family suffers. We are really offering support to the whole family. The hope that we provide families is equally if not more important, than the financial support. Since our inception in 2011, LymeLight has awarded grants totaling $3.2M to 539 individuals in 46 states.

Most LymeLight team members have Lyme disease. Each of us is passionate about supporting and giving back to the Lyme community. As we like to say, “When you have been touched by Lyme, you are forever changed.” Phyllis and Scott’s daughter, after recovering and graduating from college, brought a caring voice and empathy to our applicant process. She is now in medical school studying to become a Naturopathic Doctor.

Phyllis and Scott discovered they both had Lyme after their daughter’s diagnosis. Phyllis, our Executive Director, volunteers her time working tirelessly for our cause. Scott, Chairman of the Board, guides our team with his business savvy based on 30 years in the financial investment field. Candice Mitchell, LymeLight’s first grant recipient in 2011, has come full circle. Working at the Foundation fulfills her passion for serving others who suffer from chronic illness. Megan Holm finds working at LymeLight a cathartic way to channel her own Lyme journey and support others who are still in the trenches.

Board member Scott Forsgren created BetterHealthGuy.com, a site dedicated to Lyme disease and Mold Illness. We are grateful for his depth of knowledge and deep desire to help families suffering from Lyme. Our only team member who does not have Lyme is Liz Rieke. Her enormous heart and call to give back to the community have been a tremendous asset to our Foundation.

I am grateful to be working on a team that is focused on improving the lives of others. We are united on the promise of hope and healing. We have been honored and inspired to partner with the Cohen Foundation. Their $2M grant (over 5 years) directly funds treatment grants which have allowed us to expand our reach and help more children. Together we are having an enormous impact. Our anonymous survey shows that 80% of our grant recipients are significantly improved after receiving treatment funded by the LymeLight grant.

While I would never wish to have Lyme disease, it has been a blessing in disguise. I would have never thought of nonprofit work or known the true joy and privilege of serving others in such need. Knowing that I have been part of helping over 500 children strive towards better health, continue in school or jobs and regain a life of normalcy, brings me such immense satisfaction and peace. Be sure to check out our Stories of Hope to learn what our grant recipients are saying about their treatment journeys.

[1] https://www.cdc.gov/mmwr/preview/mmwrhtml/ss5710a1.htm

[2] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3976119/