Become a Lyme Advocate, Register for the 2022 Lyme Fly-In

Funding Requests

For those who have never participated before, the Lyme Fly-In provides a unique opportunity to get face time with legislators and their staff. With over 200 people already registered, you can join a group of dedicated advocates requesting more federal funding for Lyme disease research.

This year there are 7 specific asks for funding across a variety of federal agencies which include:

1. Fully fund the Kay Hagan Tick Act. + $30 million
2. Support the Lyme X Innovation Accelerator by matching the Cohen Foundation’s grant by funding personnel and programming. + $5 million
3. Create new centers of academic excellence by increasing the NIH budget to fund universities around the country. + $100 million 
4. Allocated a portion of ARPA-H funding to focus on developing therapeutics and clinical trials networks for Lyme disease. + $50 million
5. Continue to increase CDC funding for prevention and public awareness bringing the total $30 million. + $6 million 
6. Bring total annual NIH Lyme Disease Research budget to $121 million. + $40 million
7. Fund CDMRP Tick-Borne Disease research program. +$9 million 

An Advocate’s Experience

Even if you are a novice advocate you can still participate. The Center for Lyme Action team will host a training session on February 15th, one week before the Fly-In to review the above asks and give you time to practice with other advocates. 

To make advocate’s experience more streamlined, Center for Lyme Action has contracted Advocacy Associates, who have developed an app and webpage to give participants all the information they will need. Grouping advocates by state and representative, you will have a list of who is in your group prior to joining any session. CLA will appoint a group leader who has experience conveying these complex topics, but everyone is encouraged to participate. Bonnie Crater suggests that at the beginning of each session each person takes 30 seconds to 1 minute to introduce themselves and share their Lyme story. These first-person accounts are usually even more impactful than running through a list of funding requests. 

Future of the Fly-In

The future of the Lyme Fly-In is to be determined. While in-person advocacy isn’t available right now, if it becomes possible again in the future Bonnie agrees it can sometimes make an even bigger impact. However, the benefits of going virtual cannot be overstated. More people than ever before have been able to participate in advocacy from the comfort of their homes. Previously expensive trips and lodging costs for advocates from out of state are eliminated, making the process more equitable and providing a voice to patients who may be too sick to leave their beds. 

If you have not yet signed up to participate in the Fly-In, Project Lyme strongly encourages that you do. The experience will make you feel empowered and you will be helping to create progress for the entire Lyme community. The deadline to register is February 10th.