top of page
Search

2023 Fibromyalgia Legislative Advocacy Day

On May 10th and May 11th, 2023, Veteran Voices For Fibromyalgia Team Members, joined ranks with Fibromyalgia Driven Organizations and Independent Fibromyalgia Advocates, and went to Capitol Hill (virtually) to advocate on behalf of those living with Fibromyalgia. This cross collaboration, led by the Support Fibromyalgia Network, was a coordinated legislative advocacy coalition, meeting with Senators and Congressional Representatives, to advocate on behalf of those living with Fibromyalgia. Specifically:

  • The appropriation of $50 million for purpose driven Fibromyalgia research at the National Institute of Health

  • In addition, the appropriated amount of $50 million for Fibromyalgia research, is ear-marked and given over sight, to ensure the funds are utilized researching the neurological components of Fibromyalgia, so as to properly classify Fibromyalgia in the correct neurological condition category, and identify the appropriate Medical Specialty for treatment of Fibromyalgia

  • Thus, targeted research for Fibromyalgia, will create actionable steps for treatment and pharmaceutical drug development for Fibromyalgia, along with provide up to date Fibromyalgia information for both medical providers and patients

In 2019, Melissa Talwar the founder of the Support Fibromyalgia Network, identified the need for Fibromyalgia legislative advocacy, specifically advocating funding for Fibromyalgia research is allocated to the National Institutes of Health. Since then, Melissa has led the charge, breaking the silos in the Fibromyalgia Community, creating an unprecedented grass roots Fibromyalgia advocacy coalition, of independent advocates and Fibromyalgia specific organizations. Through cross collaboration advocacy, this year's Fibromyalgia Capitol Hill Advocacy Day gained momentum never seen before. Advocates submitted appropriation request letters to Senator Durbin of Illinois, Senator Graham of South Carolina, Senator Merkley of Oregon and Senator Rubio of Florida. In addition, an appropriation request letter was submitted to Congressman Moolenaar of Michigan. Fibromyalgia Advocates, including Veteran Voices For Fibromyalgia Team Members, met with our Senators and Congressional Representatives, sharing our lived experience with Fibromyalgia, and requested their support to ensure robust funding for Fibromyalgia research, is designated to the National Institute of Health, for fiscal year 2024.


As a result of this strategic, cross collaboration of advocacy efforts, Senator Durbin of Illinois committed to adding Fibromyalgia Research Funding as a line-item, through the Senate Committee of Labor, Health, Human Services, Education and Related Agencies. While we are still waiting on the outcome of the appropriation funding requests through the House and Senate Labor, Health, Human Services, Education and Related Agencies Committees, we will continue to engage in collaborative advocacy, rallying our community to contact their legislators, advocating support for Senator Durbin's line-item request for Fibromyalgia research funding. This is an example of how coming together elicits impactful change for the Fibromyalgia Community. This year's Capitol Hill Fibromyalgia Advocacy Day is a shining example of what we can accomplish working together as a team... All of this is what #TeamFibro is all about, because together, WE can make a difference! #GoTeam Thank you to all the Fibromyalgia Delegates and Team Leads, who gave their time and energy on May 10th and May 11th, 2023, amplifying the voices of those living with Fibromyalgia, engaging in actionable proactive advocacy, and positively impacting those living with Fibromyalgia! Go Team Fibro!



46 views0 comments

Comments


bottom of page