By Melissa Swanson
If two heads are better than one, just image what six determined advocates can accomplish when they put their heads together.
The International Support Fibromyalgia Network(ISFN) is a non-profit movement dedicated to educating, informing and inspiring the fibromyalgia community. Although ISFN is a new fibromyalgia network, the advocates behind it are all well known in the fibromyalgia community. Our founding advocates all have fibromyalgia and represent a wide variety of ages. The advocates will be focusing on six areas of advocacy, including are medical education, adolescents with fibromyalgia, veterans and fibromyalgia, families and fibromyalgia, men and fibromyalgia, and advocacy.
Who are the faces behind the ISFN?
Melissa Talwar, the Founder and President of ISFN, 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 is ISFN Secretary and Fibro & Families Program Director. In 2013, Brandi created Being Fibro Mom and My Fibro Journalwith the intent of helping fibromyalgia sufferers become fibromyalgia thrivers and advocating for parents enduring the hardships of fibromyalgia. She hosts a live show each Friday 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’s & Veterans Program Director. 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 co-morbid 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 Teen & FamilyProgram 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 serves as the Men’s & Family Co-Coordinator. 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.”
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 NFMCPA Leaders Against Pain Advocate and 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.”
“The new chapter in fibromyalgia education and advocacy begins now!” says Melissa Talwar.
Learn more about ISFN at https://supportfibromyalgia.org/ and https://www.facebook.com/supportfibromyalgia/.