This is topic Major funding activism going on!! in forum Activism at LymeNet Flash.

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Posted by Robin123 (Member # 9197) on :
Hi all - real excited to let you all know that 140 of us participated in a Zoom virtual "fly-in" today to meet with Congressional reps and ask for more funding in FY22 for Lyme and co's!

We made 6 asks -

1) Fund the Kay Hagan Tick Act (passed in 2019) for another 25M (million) to bring the total to 30M, as 5M was obtained in FY21. 10M for research grants through the CDC and 20M for states and tribes for prevention and response.

2) Fund NIAID another 20M (for a total of 83M) for accurate diagnostics and a cure.

3) Fund the DoD for research to benefit military personnel - add 5M to the 7M we already have from FY21. Military is very affected by ticks on the ground, etc.

4) Fund HHS to develop a national strategy for combatting tick-borne diseases. Asking 5M (I think that one is low, given the extent of TBD, but we'll take what we can get)

5) Fund the LymeX Innovation Accelerator public-private collaboration 5M to carry out prize competitions, education and awareness programs and to support innovation for prevention, diagnosis, and treatment of Lyme.

6) Fund the CDC 5M for surveillance of persistent Lyme disease.

May I say, we have a wonderful organizing group with Center for Lyme Action. They are the Wash DC arm of the Bay Area Lyme Foundation which is putting major funds into research. There are a lot of wealthy folks in my area...

The FY22 appropriations cycle starts in Feb and Congressional budget decision is completed by December 21. It's a process of asks, and committee meetings and votes. I can keep people posted here if we need the community to speak up and to whom.

So go ahead and make comments or ask me questions, since we are now kicking off some major Congressional funding for us!

[ 02-26-2021, 02:03 AM: Message edited by: Robin123 ]
Posted by marie (Member # 3980) on :
What were the funds President Trump put in place for Lyme?
Posted by Robin123 (Member # 9197) on :
I'm still learning what has been happening recently re funding. My understanding is that President Trump signed the FY21 Appropriations bill on Dec 30, 2020. And that the bill provided another 36 million in funding! For a total of 91 million - ie adding onto the 55 million from FY 20. So everyone was very pleased with the additional funding.

I'm not sure exactly where the money went to. My guess is that the bulk went to Item #2 described above - I could find out.
Posted by Lymetoo (Member # 743) on :
It's amazing that we finally have some "real" money .. enough to do something with!
Posted by Robin123 (Member # 9197) on :
Yes! We will finally start getting more attention. They pointed out to us that leprosy gets more funding per person than Lyme does! I don't know anyone with leprosy and I doubt that anyone does here.

I attended one of the Zoom trainings - it was great to see so many people ready to speak with their state's Congressional reps!

Last year was the first year, when activists showed up in person in DC. We were told that 4x as many activists as last year were on the Zoom call. They should keep doing it this way to get as many involved as possible.

Some advocates had 5 meetings scheduled in one day!

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