Tag Archives: Arthritis Foundation Volunteer

From Patient to Patient Leader: Every Voice Counts

We are spotlighting two people this month who are sharing their experiences as members of the Arthritis Foundation’s Patient Leadership Council (PLC). Learn how to apply to join the PLC at the end of this post.

By Sarah Cloud | Sept. 1, 2021

An arthritis diagnosis can be one of surprise and acceptance or one of absolute fear. It all depends on what words precede the word “arthritis” and how your health care provider may explain and support your diagnosis.


The doctors in our rural area hadn’t seen a patient like our son. I didn’t know another parent on this journey for over two years. In the years that followed I found an amazing group of moms on Facebook who helped us along our journey, and we became heavily involved in the Arthritis Foundation.

One night, I was reading a newsletter and there was a link for a newly forming Patient Leadership Council (PLC). The Foundation was looking for people to apply, but I almost didn’t. I had talked myself out of it. Why? Who wants to hear from a school bus driver in the middle of nowhere who has no letters behind her name? I didn’t have any formal education and no connections to the Foundation, as there was no local Foundation office. We joked at national events and online that we lived in “No Man’s Land.” We lived in Hurricane, Utah, located 16 miles from Arizona and about 40 miles to Nevada. It’s often known as “Land of the National Parks,” but not much else.

Eventually, a few good friends told me to apply because the worst they could say was no. Imagine my surprise and shock when I received a call and an email inviting me to sit on the Inaugural panel of the Patient Leadership Council — me! Little ole me, the uneducated school bus driver from the middle of nowhere me.

Being a member of the PLC has allowed me to express my voice as a mom, but especially as a rural mom, when it came to what we needed and what was considered. The care my son received was so vastly different from the care our friends in Salt Lake City received. We had the same doctors but different access. If we had a problem, it required a six-hour drive each way and a hotel room if we could afford it.

Most the time we couldn’t afford a new set of tires for the car to make the trip, let alone to stay the night. This meant that many times our son had to receive care once every six months or by phone. If we had problems, I had to email pictures to the doctors in Salt Lake City, then they would tell us what to check for and what to do. Think: pre-telemedicine. I couldn’t just schedule him for clinic. Scheduling for clinic meant a day off work, having to find a substitute, arranging transportation, gas, meals and entertainment for a then-preteen who hated car trips.

To be able to voice what was different from our perspective gave voice for every rural family the foundation serves. It allowed us as patients to say: “Nothing about us without us.” We have been asked to weigh in on many things, from the direction of events to targeted market research studies. We never know what will come our way to study and voice feedback on.

I have loved my time on the PLC. I have formed friendships with people I probably wouldn’t have met. With these friendships and support and encouragement, this mom went back and earned a college degree in patient access and we have since moved to rural southwest Missouri, where, Ironically, we face many of the same challenges with lack of resources and care, but this time I know I have a voice and resources to change that.

If you’re like me and don’t think your little voice matters, you’re wrong. Your experiences and voice are needed to shine light on what we as a collective community can do to change the access and outcomes for people everywhere.

If you’re interested in joining us, apply. The worst they can say is no.

Interested in applying to join the Patient Leadership Council (PLC)? Applications are currently open! You can applyHERE. Deadline for application submissions is 11:59 p.m. Oct. 15, 2021. If you are selected for next steps, we will notify you by early to mid-November. Thank you for your interest! And spread the word!

alex jacobson

Climbing Mountains to Conquer Arthritis

People climb mountains for many reasons. For some, it’s a test of physical strength and endurance. For others, it’s for the rush and exhilaration. For Alex Jakobson, it was to prove to himself that he can overcome the pain and limitations of arthritis.

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Amy and Kylie McCormick

Champions of Yes: Amy and Kylie McCormick Form a Dynamic Duo to Tackle Juvenile Arthritis

When you meet Amy McCormick and her daughter, Kylie, of Hauppauge, New York, you instantly feel as though you’ve known them for years. They both consistently greet you with warm smiles and joyful hellos, chatting about their love ofHamilton, the arts and their newly adopted rescue puppy named Autumn.
Continue readingChampions of Yes: Amy and Kylie McCormick Form a Dynamic Duo to Tackle Juvenile Arthritis

Louisiana Walk To Cure Arthritis

Volunteer Kick-Starts Successful Louisiana Walk To Cure Arthritis Event

出生于7月4日的杰夫和萨拉·莫斯兰把红头发的埃勒里称为他们的“鞭炮”,但19个月大的时候,只有埃勒里的膝盖发炎了。They soon discovered the reason:juvenile arthritis(JA).

埃勒里的母亲萨拉·莫思兰德(Sara Morthland)说,我感到很无力。“我无法让它消失。”

The Baton Rouge, Louisiana resident turned emotion into action and searched for a fundraiser supporting an arthritis cure. When she discoveredWalk to Cure Arthritis, Sara was elated—only to learn Louisiana did not have a Walk.
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Debra Lappin Arthritis Foundation

Spotlight on Debra Lappin – Patient, Advocate & Volunteer

关节炎基金会非常幸运地拥有一个由敬业的志愿者、参与的选民和忠诚的董事会领导人组成的网络,帮助我们向前推进我们的使命。2022足球世界杯比赛回看今天的焦点集中在一个对基金会非常特别的人身上,他具备上述三点。Debra R. Lappin, JD是关节炎基金会的前国家主席,目前是美国国立卫生研究院(NIH)加速药物合作伙伴关系的患者倡导者。How Debra came to be involved with the Arthritis Foundation is quite the story –
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Arthritis Foundation volunteer Joe Barnes

Volunteer Spotlight: Oregon Volunteer Is No Average Joe


“The passion Joe has for helping the Arthritis Foundation is contagious,” says Scott Weaver, Arthritis Foundation vice president of volunteer development.” For over 10 years, he has provided ongoing support to the staff of the Oregon office and is always on site at events to help spread awareness. He makes everyone he talks to want to be a part of our mission. Every office would benefit greatly if they each had their own Joe Barnes.”
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David Fortanbary Mt/ Ranier

Until There’s a Cure, We Climb – David Fortanbary Takes Commitment to a Whole New Level

If you ask him, David Fortanbary has always been an “outdoorsy person,” and when you talk to him, you can hear his ambition and zest for life ringing loud and clear. Couple those things with the impact arthritis has had on his immediate family, and you’ll understand the makings of one of our most passionate volunteers.

David is all too familiar with just how severe arthritis can be. His father passed away in 2013 due to complications from arthritis. As David recalls, “He got a hip replacement that went bad because of progressive arthritis. When he went back in for a revision procedure, he didn’t make it out of surgery.”

While the loss was obviously a significant and devastating one for David and his family, he took it as an opportunity to make an equally significant commitment to his father’s legacy and the arthritis community as a whole.
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Dina Gilmore Champion of Yes Massage Therapist

Meet Champion of Yes: Dr. David Covall

David Covall, MD, is a board-certified orthopedic surgeon in Atlanta who has become aDr-Covall-StoryChampion of Yes for all we do at the Arthritis Foundation. Besides his staggering fundraising work for the organization – for example, he’s a corporate chair for theWalk to Cure Arthritis, helped raise $61,000 (at press time) and secured $40,000 in sponsorship for the event – Dr. Covall has been a valuable volunteer for theScience pillar.

Dr. Covall became a Science volunteer last year and quickly jumped in to offer his services for the group. Earlier this year, he joined the 2015 Scientific Discovery Advisory Committee (SDAC) earlier this year, and now represents the SDAC as a speaker at Arthritis Foundation events in the regions. He was a reviewer for the Scientific Strategy and serves as an advisor to the osteoarthritis and rheumatoid arthritis Big Data projects.

Continue readingMeet Champion of Yes: Dr. David Covall