Thanksgiving reflections on Lyme disease advocacy
In the realm of Lyme disease advocacy, it’s easy to get bogged down by all the challenges we face. Sometimes, it’s helpful to take note of positive developments.
Thanksgiving is a great time to think about the progress we’ve made and reflect on where that might lead us in the coming year.
Here are some of the things on LymeDisease.org’s 2024 gratitude list.
* NASEM shines spotlight on persistent Lyme disease
For the second year in a row, the National Academies of Science, Engineering, and Medicine held a paradigm-shifting workshop regarding “infection-associated chronic illnesses,” or IACI. The 2024 event focused specifically on persistent Lyme disease. This marked a significant shift after years of “Lyme denialism” by the medical research community. Important scientists and Lyme community members, including advocate Nicole Malachowski, filmmaker Rhisa Parera, LymeDisease.org’s Lorraine Johnson participated. READ MORE.
* “The Quiet Epidemic” shown at US Capitol
On November 20, Connecticut Senator Richard Blumenthal hosted a special screening of the award-winning Lyme documentary The Quiet Epidemic at the US Capitol Visitors Center in Washington DC. READ MORE.
* Center for Lyme Action leads community in advocating for Lyme funding
Center for Lyme Action is a 501c4 dedicated to growing federal funding for Lyme disease in an effort to find a cure — especially for Lyme patients with persistent, debilitating symptoms. Their efforts helped pass the Kay Hagan Tick Act, signed into law in 2019. Every year since then, CLA has helped garner increased funding for Lyme disease research in a number of areas.
In February, you can take part in the CLA’s next Virtual Fly-in for Lyme funding—an opportunity to ask your Congressional representatives for their support. Learn more and register here.
* MyLymeData continues to grow in size and influence
More than 18,000 Lyme patients have joined LymeDisease.org’s MyLymeData registry, sharing information about their personal experience to help find a cure for Lyme disease.
Meanwhile, the project’s reach continues to increase. It has been cited more than 100 times in peer-reviewed publications and was prominently featured at the aforementioned NASEM conferences.
MyLymeData seeks to work with scientists, biorepositories and treating physicians to accelerate the pace of research.
If you haven’t enrolled in the program yet, I urge you to do so. Help us get to 20,000 participants!
* After 10 years of meticulous groundwork, biobank now yielding impressive results
The Lyme Disease Biobank collects and stores human biological samples, such as blood, urine, and tissue, for use in Lyme disease research.
It aims to provide researchers with the necessary materials to develop better diagnostics and treatments for Lyme disease. It collects samples from individuals with early Lyme disease and persistent Lyme disease, as well as postmortem tissue donations. These samples, along with detailed medical histories, are made available to approved researchers working on new diagnostics and treatments. READ MORE.
TOUCHED BY LYME is written by Dorothy Kupcha Leland, President of LymeDisease.org. She is co-author of Finding Resilience: A Teen’s Journey Through Lyme Disease and of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org.
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