According to the Centers for Disease Control and Prevention (CDC), Lyme disease is one of the fastest growing infectious disease in the United States, impacting nearly half a million people in the United States every year. Over 25% of that total are adolescents and children.
Lyme disease is a bacterial infection you primarily get from the bite of an infected tick. At first, Lyme disease usually causes symptoms such as a rash, fever, headache, and fatigue. But if it is not treated early, the infection can spread to your joints, heart, and nervous system.
Chronic Lyme disease has frustrated doctors and patients alike for years. The severe, persistent symptoms, such as chronic fatigue, muscle and joint pain, arthritis, or cognitive difficulties, have disrupted patients’ lives and treatments have been elusive.
To make matters worse, — paying out-of-pocket for treatment can be just as painful since insurance companies often don’t adequately cover the treatment. Those firms rely on a statement by the CDC that says Lyme disease is curable with 30 days of antibiotics so that they do not have to pay for more substantial therapies.
Unfortunately, Bay Area parents Phyllis and Scott Bedford faced this issue first-hand in 2008, when their daughter was diagnosed with Lyme disease. Like so many other Lyme patients, she had been sick and undiagnosed for many years prior. The Bedfords were shocked to learn that chronic Lyme disease was not covered by their insurance, leaving them and other families in the same predicament - on their own to battle the disease.
As their daughter recovered, the Bedfords met many parents who were forced to decide between feeding and housing their families or treating their sick children. So, in 2011, they decided to do something about this injustice. Phyllis and Scott, along with another local family who also had a daughter being treated for Lyme, created the LymeLight Foundation.
Unlike many Lyme foundations that focus on research and awareness, LymeLight is the only foundation in the nation with the core mission of funding significant medical treatment grants to adolescents and children suffering from Lyme who cannot afford proper care or medication.
Since 2011, the organization has awarded $7 million to 1,013 families of adolescents and children across 49 states. Wonderfully, 75% of recipients report substantial health improvements. Currently, 60% of applicants are awarded medical grants of up to $10,000 to pay for necessary medications and therapies for Lyme disease. There is still more that can be done. LymeLight distributes grants three times each year – The next application deadline is coming up on Dec 10th! – Click here to learn more about the application process.
RINA is so proud to be associated with such a worthy cause and such wonderful people – we love working with them. The feeling is mutual according to LymeLight’s Executive Director Phyllis Bedford, “The expertise and willingness from Ed Fahey and his team at RINA to meet our needs has benefited our organization immensely. Having critical financial information when I need it, along with a trusted objective opinion, is invaluable.”.
The LymeLight Foundation believes that a significant piece of solving the growing Lyme disease problem is getting those sick well, so they can become part of the solution as the educators of tomorrow. Please visit the LymeLight Foundation website to learn more.