ADVOCACY, PROCLAMATIONS, & RESOLUTIONS: UNITING THE FIBROMYALGIA COMMUNITY ONE ACTION AT A TIME

In late 2020, Kristal Kent, founder of Veteran Voices For Fibromyalgia and The Fibromyalgia Pain Chronicles, identified the need for collaboration among advocates in the Fibromyalgia Community. Instead of working independently, she aimed to unite non-profit organizations and patient experts through collective efforts. In early 2021, Kristal applied for grants to support these initiatives, leading to the creation of #TeamFibro, a consortium focused on collaborative advocacy and awareness.

Upon receiving grant funding to initiate this new venture in collective advocacy, Kristal aimed to unite patient advocate experts, registered dieticians, and licensed medical professionals to create informational seminar videos. These videos covered a variety of topics including nutrition, functional medicine, patient rights, the unique healthcare needs of veterans, support systems and resources provided by various chronic illness groups and non-profits, as well as participatory medicine between patients and providers. Additionally, Kristal developed informational resources on several key areas: “Building Relationships with Legislators,” educational guides for effectively requesting Governor Proclamations and State Resolutions, and tips on creating a compelling personal account of living with Fibromyalgia, to share with lawmakers, when advocating for funding for specific driven research for Fibromyalgia.

The #TeamFibro initiative united advocates and non-profits throughout the world including Australia, Canada, India, Mexico, Portugal, Taiwan, the UK, Spain, the United States, and many more! They launched efforts to protect at-risk patients in community spaces like grocery stores during the early pandemic years, created online petitions to the CDC and NIH with translations into Spanish and Mandarin Chinese (https://chng.it/htqpMf2xrL), advocating for updated fibromyalgia information on tax funded health-specific websites, and organized free virtual conferences and seminars with topics ranging from patient rights, legislative advocacy, coping with chronic illness, community resources, understanding fibromyalgia and overall health, and enhancing community support. As a result, a new pathway to community advocacy emerged.

This approach fostered collaborative efforts for awareness and advocacy initiatives such as virtual and in person meetings with legislators, free online conferences hosted by organizations such as Being Fibro Mom, Freddy J's Fibro Fighters, Heart, Faith & Strength - Fibromyalgia Awareness, International Pain Foundation, Fibromyalgia National Health Organization (formerly Support Fibro Network), Fibromyalgia Task Force of New York State, Looms4Lupus, Lupus Spoons, The Social Good Conferences, Men With Fibromyalgia, My Several Worlds - Chronic Pain and Disability Awareness, Today With Tally, aka "The Tally Team" and Veteran Voices For Fibromyalgia, in conjunction with The Fibromyalgia Pain Chronicles, #TeamFibro informational videos, patient-driven research surveys, crowd-sourced resources, and coordinated efforts to obtain Fibromyalgia Proclamations and Resolutions since 2021. In addition, social media awareness and advocacy campaigns were also key elements of cross collaboration amongst non-profits. #TeamFibro's ethos is about community service, emphasizing collective effort, not individual recognition, for meaningful change.

Kristal Kent states: "Team Fibro consists of advocates and non-profits, working in tandem, on outcome driven awareness and advocacy initiatives to support our community and empower patients. #TeamFibro emphasizes teamwork over individual recognition. It’s not about ‘one’ of us, it’s about ‘all’ of us."

ADVOCACY IN ACTION: Watch the short video clip of #TeamFibro advocates meeting with state and federal legislators: https://youtube.com/shorts/6dPZuxIDVj0?si=9gidozZudLb9jvKz

CLICK PHOTO ABOVE TO WATCH ADVOCACY IN ACTION VIDEO

FIBROMYALGIA PROCLAMTIONS AND RESOLUTIONS PHOTOS:

FIBROMYALGIA PROCLAMTIONS VIDEO CLIPS:

2025 Fibromyalgia Proclamations Video Link: https://youtube.com/shorts/afOsSCVoNwk?si=HpVI0NE4ndQm4LnT

CLICK PHOTO ABOVE TO WATCH VIDEO

2024 Fibromyalgia Proclamations Video Link: https://www.facebook.com/share/r/1Db6mqNPGk/

CLICK PHOTO ABOVE TO WATCH VIDEO

Visit the websites below to learn more about the organizations involved in/supporting #TeamFibro

Being Fibro Mom: https://www.beingfibromom.com/

Fibromyalgia - Heart, Faith, & Strength: https://www.instagram.com/heartfaithstrength

Fibromyalgia National Health Organization: Fibromyalgia National Health Organization

Fibromyalgia Task Force of New York State: Fibromyalgia Task Force of New York State

Freddy J's Fibro Fighters: https://www.instagram.com/freddyjsfibrofighters/

International Pain Foundation: iPain International Pain Foundation Power of Pain Headquarters

Looms4Lupus: Looms4Lupus

Lupus Spoons: https://www.facebook.com/lupusspoons

Men With Fibromyalgia: https://www.facebook.com/MenWithFibromyalgia

My Several Worlds - Chronic Pain and Disability Awareness: Feature Stories on My Several Worlds

The Fibromyalgia Pain Chronicles: https://www.facebook.com/FibroPainChronicles

The Social Good Conferences: The Social Good Conferences

Today With Tally: Brian Tally | Motivational Speaker

Veteran Voices For Fibromyalgia: Veteran Voices For Fibromyalgia | Veteran