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CDC Foundation Collaboration with Groups Key: LDA Meeting Report
CDC Foundation Collaboration with Groups
Lyme Disease Association Inc (LDA) Board of Directors Member Jeannine Phillips attended the first virtual meeting of ICUE, the CDC Foundation’s new infectious disease-based initiative, February 8, 2023, which includes Lyme disease. About 40 patient advocacy and community-based organizations from different health conditions were represented in the initial endeavor. Meeting report from Jeannine (picture) follows.
Report
The CDC Foundation website states it is “an independent nonprofit and the sole entity created by Congress to mobilize philanthropic and private-sector resources to support the Centers for Disease Control and Prevention’s critical health protection work…. “a catalyst for unleashing the power of collaboration between CDC and philanthropies, private entities and individuals to protect the health, safety and security of America and the world”.
The CDC Foundation’s new initiative is ICUE, (pronounced IQ), the Infection Associated Chronic Conditions Understanding and Engagement Project. CDC Foundation collaboration with groups is the key– patient advocacy groups, community-based organizations, and the CDC Foundation. ICUE aims to create a public-private partnership which may serve individuals experiencing infection-associated chronic conditions, post-acute infection syndromes, Long COVID, and comparable conditions.
First Meeting
This initial meeting sought to initiate working relationships and facilitate future collaborations of organizations working toward related future community needs. In response to initial meeting guidelines, representing the all-volunteer-run national Lyme Disease Association, Inc, I spoke of LDA’s mission and some objectives in my 5 minute slot touching on collaborations with others including Columbia Lyme and Tick-borne Diseases Research Center, past and present partnerships with researchers resulting in publications in 60 peer-reviewed scientific journals, variety of educational programs, grants, and material sponsored by LDA, and the Lyme-Aid for Kids (LA4K) program which has helped fund medical assistance for children.
Later, when asked, I mentioned, the Lyme community’s need for assistance in educating medical professionals, government, medical institutions and communities in general. They need to be acquainted with a wider view and knowledge of 15+ tick-borne infectious diseases recognized by the CDC. Additionally, knowledge of medical treatment needs to be disseminated to educational institutions, state, county and local governments, public education institutions, and medical groups where wider acquaintance with significant strides in research and knowledge has been lacking. Greater and broader educational efforts supported by CDC Foundation would be welcome with LDA and partners engaging in collaborations in an advisory capacity on these subjects when possible. I emphasized the ability of the Columbia Lyme Center to bring together researchers from various disciplines and venues has had significant positive results in advancing the science.
The meeting ended with CDC Foundation officials summarizing information from the breakout discussion rooms’ participants and plans for the next meeting. This new endeavor marked, perhaps, a shift in philosophy of the greater CDC toward a desire for more collaboration with groups and populations which their organization’s actions and policies affect, and a desire to personally become more aware of patient experiences and needs which could inform decisions, policies and initiatives of the CDC for the future.
Next Meeting
For the next meeting: ICUE leaders hope to brainstorm ideas for future CDC Foundation collaborations with groups. They hope to develop a survey of boards of the various participating organizations to identify commonalities and methods of Public Education and Outreach to enable connections. They strive to promote ideas for communication between healthcare professionals and researchers.
The CDC Foundation ICUE program expects to be posting more information on its website very soon.
(This article initially posted 2.11.23)
For More Information
LDA-Funded Published Research in Journals