In the May issue, I told you about a new fibromyalgia awareness campaign, Ravyn’s Doll. This campaign was just an idea in my head that only took flight with the help of the members of the International Support Fibromyalgia Network. I spoke of them briefly in the Ravyn’s Doll is Spreading Awareness of Fibromyalgia article due to space constraints. However, this fibromyalgia organization deserves more than a few sentences to meet the members and to learn what their mission and programs are developing. Meet the International Support Fibromyalgia Network, the team members, and what their programs aim to do.
[bctt tweet=”Meet the team at #SupportFibro and learn about their mission for the #fibromyalgia community across the globe. #TheFibromyalgiaMagazine” username=”beingfibromom”]
This article first appeared in The Fibromyalgia Magazine, June 2018. Get the digital copy of the magazine from Pocketmags.
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The International Support Fibromyalgia Network (ISFN) is a 501(c)(3) organization as a public charity, or nonprofit organization. This means it receives a substantial portion of its income from the public as a donation. The public can include individuals, companies and/or other nonprofit organizations. These donations support the programs developed by the organization.
Dedicated to educating, informing and inspiring the fibromyalgia community, ISFN is on a mission to bring the fibromyalgia community together through education, research, awareness, and advocacy. Each founding advocate of the organization firmly believes in everyone receiving positive healthcare experiences, updated resources, strong support programs and a collaborative environment.
Meet the International Support Fibromyalgia Network Team
Melissa Talwar, President and Founder
Melissa is a tech and marketing nerd on a mission to increase education and advocacy for the fibromyalgia community. Her passion to advocate for patients with fibromyalgia stem from her own struggle with chronic pain that began in her teens. Like many living with fibromyalgia, it took years of going to multiple doctors and experimentation with various treatments. That struggle took an emotional toll. She started volunteering and advocating in 2002, but never felt like she could do enough. With her health continuing to decline in 2016, she set out on a mini-fibro tour to meet other advocates, doctors and support groups. “After many discussions on the road, a few of the advocates banded together to form the International Support Fibromyalgia Network.” ~ Melissa Talwar.
Brandi Clevinger, Secretary
Brandi Clevinger is also the Families & Fibromyalgia Program Director, and works with Norman on the Veterans & Fibromyalgia program. In 2013, Brandi created Being Fibro Mom and My Fibro Journal with the intent of helping fibromyalgia sufferers become fibromyalgia thrivers and advocating for parents enduring the hardships of fibromyalgia. She hosts a live show each Tuesday called Fibro Live in which she discusses the latest fibromyalgia topics, news, research, and more. In addition, Brandi is a regular writer for the international magazine, The Fibromyalgia Magazine. In 2016, she created a closed Facebook group, Fibro Parenting. The group is focused on any parent or guardian looking for support while parenting with fibromyalgia. “My goals as program director are to create a support group – online and offline – for fibro thrivers and their loved ones as well as working with the other founding advocates of ISFN to establish accurate, up-to-date information regarding fibromyalgia.”
Norman Hanley, of Men with Fibromyalgia, is the Men & Fibromyalgia Program Director and works with Brandi on the Veterans & Fibromyalgia program. In 2008, Norman, a USMC veteran, was a traveling salesman, seeing his sales decline due to fatigue. In 2012, he could no longer travel, so he took a local job. After four months of a part-time position, Norman was bumped to a full-time salaried position that started strong and well, but by early 2013, his production was such that he was in a quit or be fired situation. During this time, he worked with the VA to find a reason for his pain and fatigue. A couple of years and several doctors later, he was finally sent to the Pain Clinic within the VA and diagnosed with fibromyalgia along with a few other comorbid conditions. In 2015, he came to the conclusion that he could no longer work and had to file for SSDI. In seeking out other Men with Fibromyalgia, Norman started his website MenWithFibromyalgia.com and a Facebook support page Men with Fibromyalgia to share his experiences with others. In addition, he is a speaker and well-loved advocate in the Chronic Illness Community. As Norman says, “I feel like Job from the Bible, using my illness, pain and suffering to help others.”
Kristin Sciarappa is the Adolescents & Fibromyalgia Program Director. Kristin has been advocating on behalf of fibromyalgia patients since she received her official diagnosis in 2014. She is the founder of the online support group Fibro Fighters Under 40, which as the name suggests, is a group specifically for young adults and teens who live with fibromyalgia. Kristin uses her love for writing and passion for advocacy on her newly-named blog Living Invisible, where she shares her experiences and opinions regarding fibromyalgia and mental illness. She is also a frequent contributor to the popular website The Mighty.
Rick Malta helps with the Mens and Family programs. Rick is a single dad who has been blessed with a remarkable young man to raise. Together, we go through life one day at a time. “Dastardly Dad is our perspective on family life and how my chronic pain affects our lives. It is our journey as we attempt to move past the loss of my ex-wife (Jack’s mother), coping with my chronic conditions, and sharing some laughs,” states Rick. “We have our moments, both good and bad. We hope to be able to share a piece of our lives with the hopes that we can help others who face similar situations.” Rick started a support group on Facebook called Life as a Single Spoonie Online Support Group. The group “was formed with those in mind who are struggling to cope with a chronic pain condition alone. If you lack a support system that understands what sort of struggles you face, then consider joining this group.”
Melissa Swanson is the ISFN Advocacy Program Director. Melissa is a chronic pain patient, advocate, and author. Through her Fibro Warriors ~ Living Life Facebook page and blog, she offers positive encouragement, medical information, resources, and support. In addition to writing for ProHealth.com she is the author of Ravyn’s Doll: How to Explain Fibromyalgia to Your Child. She is a Certified Fibromyalgia Advisor thru the International Fibromyalgia Coaching Institute. “I understand and try to help others with the struggles of trying to balance family life and work while living with the challenges of fibromyalgia and its evil sidekicks.”
Medical & Health Education
We would like to see all patients in the fibromyalgia community receive quality healthcare. From getting a correct diagnosis, to implementing treatment plans, we feel there is still a need for education. Fibromyalgia advocates and teams of healthcare professionals will be working together to provide updated and accurate diagnostic tools, training manuals and educational seminars in order to create a community of wellness.
Families & Fibromyalgia
There is no easy way for a family to prepare for the diagnosis of a chronic illness. Families go through many emotions and building resilience together is very important. We hope to cut through the fibromyalgia guesswork by establishing programs built to service families directly with resources and expert leadership. Get Fibro Parenting resources.
Adolescents & Fibromyalgia
One condition that’s easy to overlook in children, teens and young adults is fibromyalgia. When fibromyalgia and chronic pain happen at younger ages it can be frustrating and very isolating. Much of the information found online does not apply to children and adolescents or is outdated in light of newer research. Our goal is to clear up this confusion and increase local resources like creating school advocates, providing mentorship and training for parents in advocacy roles.
Veterans & Fibromyalgia
We will be designing medical education material, increasing access to support groups and other wellness resources along with building education programs in VA hospitals on fibromyalgia and chronic pain. Read more about Veterans and Fibromyalgia.
Men & Fibromyalgia
This is a joint effort with the Men with Fibromyalgia community group to improve the quality of healthcare education, medical treatment and increase advocacy training and representation for the men of the fibromyalgia community.
Advocacy & Research
We are currently in the development stages for state and federal advocacy programs, along with working with allied researchers. More leadership team members are needed for these particular areas. We have ambitious collaborative goals when it comes to continued efforts for fibromyalgia. If you have an interest in being involved, please get in touch.
To learn more about the International Support Fibromyalgia Network, make a charitable donation, or sign up to receive the newsletter, please visit the website at www.SupportFibro.org.
Ravyn’s Doll Awareness Campaign