Tag Archives: rheumatoid arthritis

Survive & Thrive: Together in Isolation

It’s game on for Rob Gronkowski and Matt Iseman on the Live Yes! With Arthritis Podcast.

This was not your typical discussion about chronic pain and arthritis. There was laughing. There were singing and dancing. There was even juggling. It was just what we needed to cut through the isolation of the new coronavirus world. Former pro football player Rob Gronkowski – known by fans as “Gronk” – teamed up with Matt Iseman, host of American Ninja Warrior and a longtime friend of the Arthritis Foundation who has rheumatoid arthritis, to share their stories and some laughs on the Live Yes! With Arthritis Podcast. Together they will be hosting COVID-19 Celebrity Challenge – Survive & Thrive: Together in Isolation, presented by CBDMEDIC™ to benefit the Arthritis Foundation, on Facebook Live.

Continue reading Survive & Thrive: Together in Isolation

Not Even Arthritis Can Slow Down This Female NASCAR Driver

Natalie Decker holds a fundraiser to benefit others with arthritis.

At the tender age of 5, Natalie Decker knew what she wanted to be when she grew up. Raised in Wisconsin, Natalie’s father, Chuck, ran a motor sports track that hosted the World Championship Snowmobile Derby. Natalie wasn’t much into snowmobiling, but she was mesmerized by go-karts and told her dad that her big dream was to race in NASCAR (National Association for Stock Car Auto Racing).

Today, at 22 and living in North Carolina, Natalie has made her dream come true, becoming one of the top young drivers in the NASCAR scene. Along the way, she has broken records and continues climbing the racing ladder as she aims to achieve more victories and accolades on short tracks across the country. Last year, she was the highest finishing female on a superspeedway in Automobile Racing Club of America competition, taking fifth place. Her biggest dream is making the Cup Series, NASCAR’s top racing category.

What makes her victories even more impressive is that Natalie grew up with childhood arthritis, which she has battled since birth. After keeping quiet about her illness most of her life, afraid of being perceived as weak, she recently revealed her illness to the world and announced on her social media channels the fundraiser she’s doing to support the Arthritis Foundation. She’ll announce it again in person to her fans at the Homestead Miami-Speedway’s NASCAR season finale on Nov. 15.

Fans were able to buy a spot on the hood of Natalie’s No. 54 DGR-Crosley Toyota Tundra. Donations are still welcome, and those who donate will still receive swag that’s exclusive to the fundraiser. The hood will be auctioned off after the race, along with Natalie’s race-worn Fyshe Fire Suit, Arai helmet, racing boots, gloves and a special jacket. All proceeds from the fundraiser will help raise awareness and funds for the Arthritis Foundation’s mission, fueling research for a cure as well as resources and support for those of all ages who struggle with the disease, including life-changing juvenile arthritis camps nationwide.

We recently caught up with Natalie before the big upcoming race.

Q: What was it like growing up with arthritis?

A: I was born with it and was diagnosed at age 2. I had problems with my jaw and other joints. I took a high dosage of a chemo drug once a week for over 10 years. It made me very tired and gave me headaches. I always felt sick and nauseous. When I was young, my arms were locked at a 45-degree angle, and it took a while to straighten them all the way. My knees were always so swollen. At about 12 years old, I went into remission and got off the med.

Q: Were you unable to do certain things?

A: My pediatrician told me he couldn’t believe all I could do as a child. I was doing all these sports, whether it was dance, hockey, soccer, and I was just getting into go-kart racing at age 9. He told me, “I don’t know how you’re doing these things. It should be physically impossible.”

Q: Did you have any past involvement with the Arthritis Foundation?

A: I really wish I did, but I didn’t. I don’t think my parents knew about the Arthritis Foundation and the benefits they provide, and we were always so busy. Arthritis Foundation camps for kids with JA are so cool. Being involved in those camps would have helped me so much. Through this current fundraiser, we want to help more kids be part of that.

Q: What’s most thrilling about racing?

A: Growing up, my family and extended family would travel all over on the weekends to racing events. I loved it. From my first go-kart, I wanted to work really hard to get into NASCAR. It’s been a lot of work but so much fun. Everyone you meet becomes family. Racing is still a male-dominated sport, so it’s really cool to see how that’s changing. It’s no longer weird to be a girl in the racing arena.

Q: Isn’t racing dangerous?

A: With all the NASCAR rules they have and the gear I wear, I feel that racing is really safer than driving on the highway.

Q: What do you say to other girls, including those with a chronic disease like arthritis, to encourage them?

A: Whoever you are and whatever you want to do, do it because you want to and love it. Whatever you put your mind to, you can absolutely do it. Get a great support system. You need to have others supporting you. When you fall on your face, you can pick yourself up with the support of others. It’s so inspiring to tell other girls that they can do anything.

Q: Have you gotten respect in your field?

A: Yes, and I’ve earned it. The easiest way to earn respect in racing is to race your race, race clean and do well. Win races the right way. Be the best you can be and be nice. Be yourself, male or female, and respect others.

Q: You recently flew with the Thunderbirds. What was that like?

A: That was absolutely amazing. I never thought in a million years I would ever do that. I ran into a Thunderbird crew in Daytona, then we connected again in Vegas, and I got to fly with them, which was another dream come true.

Q: Does arthritis affect you today?

A: I came out of remission not long ago. The pain and stiffness now are 10 times worse than when I was younger. I have to take care of myself. When I need to sit down or take a break, I do. Even when you’re racing in your car, for hours at a time in one position, that can be really painful. I have to be really prepared, recover fast and know what I can and can’t do in the gym. This past year, I went to the eye doctor and was told my eyes are drier than someone who’s 80 years old. I’ve gotten a med for that because having dry eyes is really painful. I want to start infusions, like a lot of patients with rheumatoid arthritis, and will start that soon.

Q: Tell us about your arthritis fundraiser.

A: We want to help more kids go to camp and advance arthritis research. I’m so thankful the Arthritis Foundation gives people with arthritis the resources, local programs and support they need, so they can chase their dreams, like becoming a NASCAR driver, and live a full life. I was very nervous about sharing my story for a long time. But I’m so happy I’m finally sharing it to help and be an inspiration to others. Though I’ve learned to work through the condition’s hardships, it pains me to know what these kids go through every day. We need the public’s help, and together we can change lives!

 

Bonnie Simpson Mason

Bonnie Simpson Mason Used to Mend Bones. Now She Nurtures Dreams.

Bonnie Simpson Mason, MD, faces the conference room in a power pose, hands on hips, and the medical students rise from their seats to copy her stance. Poised and confident, genial but firm, she shares her tips for success: “Be an initiator. Be a problem-solver. Be resourceful. Be that person who’s there early, who stays late, who’s always enthusiastic.” Continue reading Bonnie Simpson Mason Used to Mend Bones. Now She Nurtures Dreams.

rheumatoid arthritis research

ELMO1 – More Than Just Your Friendly, Red Sesame Street Character!

Dr. Sanja Arandjelovic has been studying inflammation and arthritis for a while – specifically, how a gene called ELMO1 is related to arthritis symptoms in mice. In 2010, the Arthritis Foundation awarded Dr. Arandjelovic the Philip S. Maaram Esq. Research (Planned Giving) 3-year grant for a project that studied cell enzymes related to joint inflammation in rheumatoid arthritis (RA) in mice.

During this study, Dr. Arandjelovic worked with Dr. Kodi Ravichandran and his research team at the University of Virginia on a related project, examining the process of joint inflammation in RA. Their work may provide clues to why the pain flare-ups associated with RA occur – and lead to new treatments.

Continue reading ELMO1 – More Than Just Your Friendly, Red Sesame Street Character!

No One Should Be in Debilitating Pain, Especially at 3 Years Old

Meet Shannan O’hara-Levi

When Shannan O’hara-Levi was only 7 months old, her mother noticed that she would wake up from naps crying and grabbing at her knees. Mrs. O’hara took her to the doctor, only to be brushed off and told it was just “growing pains” that would eventually go away. Ironically, a few years later at a routine checkup, the pediatrician asked Mrs. O’hara why Shannan wasn’t brought in earlier for her red, swollen knees. That’s when Shannan was finally diagnosed with juvenile arthritis (JA). Continue reading No One Should Be in Debilitating Pain, Especially at 3 Years Old

spotlight on dr dougherty

Researchers on the Path to a Cure – Spotlight on Dr. Edward Doherty

Why is my immune system attacking my joints? What is the cause? If you have rheumatoid arthritis (RA), this is something you have probably wondered at some point. It’s something Dr. Edward Doherty has wondered as well, and is currently studying. Dr. Doherty and his co-investigator, Dr. Pathricia Tilstam are studying key cells that drive inflammation in their 2-year Arthritis Foundation-funded project, “MIF/CD74 signaling as a new candidate for immunotherapy of rheumatoid arthritis”. With autoimmune disorders like RA, something triggers the immune system to malfunction and attack healthy cells, causing inflammation and disease. Dr. Doherty and Dr. Tilstam are looking for some of the triggers to help develop more effective treatments to stop progression and joint destruction.

Continue reading Researchers on the Path to a Cure – Spotlight on Dr. Edward Doherty

andrea avery

Andrea Avery: Composing My Life

Last week at the Conference of Champions, Andrea Avery, author and Arizona-based Foundation volunteer, shared her gripping story, intertwining her love for piano and the reality of her arthritis. Beyond sharing her personal story with hundreds of volunteers in Phoenix, she also met and performed with her inspiration, Byron Janis, master and renowned pianist. See below for an excerpt from her book, Sonata: A Memoir of Pain and the Piano.

Continue reading Andrea Avery: Composing My Life

Winterhoff Scholarship Awardees

Winterhoff Arthritis Scholarship Goes National – Eight 2017 Recipients Announced

Champion of Yes has come to mean different things to different people. To many, it means refusing to let arthritis win – to stand up, push back and say, “Enough is enough. I won’t let arthritis stop me or anyone else from living life to its fullest!”

Continue reading Winterhoff Arthritis Scholarship Goes National – Eight 2017 Recipients Announced