Category Archives: Volunteers

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.

As someone who was diagnosed at the age of 19 with osteoarthritis and then as a mom who heard the phrase, “I think your child has juvenile arthritis,” the impact varied greatly. As time passed, my husband was diagnosed with ankylosing spondylitis and I with rheumatoid arthritis. Unfortunately, what didn’t change was the lack of local resources, information and care. Our son was misdiagnosed and even had an unnecessary emergency surgery before we heard that horrid phrase, “juvenile arthritis,” combined with “We need to send him north to Salt Lake City, 300 miles away.”

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 apply HERE. 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! 

arthritis foundation mini grand prix

Racing for a Cure: Drivers Burn Rubber for Mini Grand Prix Crown

Turning into the straightaway you quickly push the pedal to the floor. The engine roars to life as you accelerate down the track. Up ahead is your next challenge – a hairpin turn that requires carefully calculated breaking and precise steering, otherwise you might spin out and lose your position. Your tires are just inches away from the car next to you. With a little luck and skill, you might outmaneuver the other driver and come out ahead without wrecking.

Tom Boehland can’t get enough of this. He grew up a race fan and for years has known legendary IndyCar driver and team owner Bobby Rahal. Today he roots for Bobby’s son, Graham, who currently competes in the IndyCar Series.

Continue reading Racing for a Cure: Drivers Burn Rubber for Mini Grand Prix Crown

volkenburg brothers arthritis foundation fundraising

Brothers to Swim Across Lake Erie in Honor of their Mother and to Support the Arthritis Community

Competitive swimming is a difficult sport. Athletes spend hours every day going back and forth in a pool with their heads mostly under water honing their skills and techniques hoping to shave tenths of a second off their times.

Continue reading Brothers to Swim Across Lake Erie in Honor of their Mother and to Support the Arthritis Community

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.

Alex was living a great life when arthritis reared its ugly head. He was 35 years old, married to his sweetheart and living in France where he enjoyed a very social and active lifestyle.
Continue reading Climbing Mountains to Conquer Arthritis

2017 Walk to Cure Arthritis National Youth Honoree Mariah

A Dream Come True – Meet Our 2017 National Youth Honoree Mariah Aquino-Truss

When Mariah Aquino-Truss was just five years old, she was in so much pain each day she told her mom, Tory, that she “didn’t want to be here anymore.” Imagine hearing such an admission from your young daughter who was newly diagnosed with a form of juvenile arthritis (JA) known as polyarticular spondyloarthropathy.

Polyarticular spondyloarthropathy is a juvenile form of ankylosing spondylitis, a chronic, long term disease that affects the joints, ligaments, tendons and entheses. Shocked, saddened and ferociously determined to help Mariah and her family, Tory set out to find help – a road that led her to the Arthritis Foundation.
Continue reading A Dream Come True – Meet Our 2017 National Youth Honoree Mariah Aquino-Truss

Walk to Cure Arthritis Young Adult Honoree Kathryn Sundquist

Fundraising is a Family Endeavor for Kathryn Sundquist, Our 2017 Walk to Cure Arthritis National Young Adult Honoree

Kathryn Sundquist is 16 years old, lives in Brainerd, Minnesota and has juvenile rheumatoid arthritis. To say she and her family live active lifestyles would be an understatement. Her mom enjoys yoga, running and participating in triathlons. Her dad is an avid biker. Her adult brothers enjoy 4-wheeling, hunting, fishing, and tennis. They all enjoy any reason to be outside!
Continue reading Fundraising is a Family Endeavor for Kathryn Sundquist, Our 2017 Walk to Cure Arthritis National Young Adult Honoree

Louisiana Walk To Cure Arthritis

Volunteer Kick-Starts Successful Louisiana Walk To Cure Arthritis Event

Born on July 4, Geoff and Sara Morthland called red-haired Ellery their “firecracker,” but at 19 months old, only Ellery’s knees were inflamed. They soon discovered the reason: juvenile arthritis (JA).

“I felt so powerless, Sara Morthland, Ellery’s mother, said. “I couldn’t make it go away.”

The Baton Rouge, Louisiana resident turned emotion into action and searched for a fundraiser supporting an arthritis cure. When she discovered Walk to Cure Arthritis, Sara was elated—only to learn Louisiana did not have a Walk.
Continue reading Volunteer Kick-Starts Successful Louisiana Walk To Cure Arthritis Event

Walk to Cure Arthritis National Adult Honoree 2017

Meet Our National Walk to Cure Arthritis Adult Honoree: Former MLB Pitcher Tom Walker!

Tom Walker, Walk to Cure Arthritis national adult honoree and former MLB pitcher, claims that it’s truly “mind over matter” when it comes to his osteoarthritis (OA) pain. Every day, he rises up and pushes forward, despite the obstacles – like having a harder time walking – that challenge him.
Continue reading Meet Our National Walk to Cure Arthritis Adult Honoree: Former MLB Pitcher Tom Walker!