When Britney Gifford started complaining about aches and inflammation in her arms, legs and knees at the age of 5, her pediatrician assured her parents it was just growing pains — after all, she was one of the tallest kids in her class. As she grew older and showed zero interest in athletics, her parents assumed it was because she just had different hobbies and interests. Continue reading Teen Fighting JA Says Knowledge Is Power
By Kristine DiDesidero, Mount Sinai, New York
I remember the pain as a child. I complained to my mom about pain in my legs. Some nights I cried myself to sleep. My mom took me everywhere for answers. The doctors told her I had growing pains. I am 4 feet, 11 inches, and stopped growing in fifth grade. The reality is that I’ve spent most of my life with what I now know as a variety of autoimmune diseases. Continue reading A Mother’s Fight to Free Her Son From Pain
November is National Scholarship Month and the Arthritis Foundation is proud to offer the Arthritis Champions Scholarship to deserving students across the country who exemplify the Champion of Yes spirit. Formerly, the Winterhoff Arthritis Scholarship, the Arthritis Champions Scholarship program is generously funded by the Walter J. and Kathryn M. Winterhoff Endowed Scholarship Fund and the NEW Dr. Smriti Bardhan College Scholarship Fund. Continue reading Arthritis Champions Scholarship
Over two long weekends in mid-July and early August, about 1,800 participants made their way to Houston, Texas, and Minneapolis, Minnesota, to take part in the 2019 National Juvenile Arthritis Conference. As in previous years, the Arthritis Foundation offered two JA Conference locations to serve even more kids, families and young adults across the country affected by childhood rheumatic diseases while also welcoming back returning veteran families.This year, more than 40 states were represented, including some families from Mexico and Canada. In both cities, more than half of conference participants were first-time attendees, experiencing everything the four-day conference had to offer. Kids and teens were treated to their own specialized programming, including peer-led activities, educational sessions and fun social happenings.
At the same time, parents choose their own breakout sessions throughout the day — from disease-specific sessions hosted by top doctors and health care experts to topics like educational rights in schools and transitioning from adolescent to adult medicine. Plenty of networking opportunities were available for female and male caregivers to connect and socialize with one another.
Young adults ages 18-25 also participated in their own program throughout the weekend, covering subjects such as mental health and wellness, relationships and patient engagement strategies. Guided by volunteer leaders, young adults were also able to participate in panels and speak to parents and teens, giving a positive glimpse into their own futures. The young adults group planned their own social activities and had a “night in” to hang out and network among their group.
On Saturday at each conference location, JA Awards were presented to a physician, youth leader, parent and health care professional who show exceptional leadership and commitment to the JA community. This year’s winners were: Paige Goehner, Dawn Hafeli Award for Youth Leadership; Staci Scharnhorst, Patti Rettig Award for Health Care Professional Leadership; Dr. Richard Vehe, Earl Brewer Award for Physician Leadership; and DiAnna Wilson, Kathy Angel Award for Parent Leadership.
This year, for the first time, a new award named in honor of Steve and Liz Smith was presented to Michael and Rochelle Lentini of Tampa, Florida, for their many years of volunteer service to the JA Conference and JA community. In 2015, Rochelle chaired the JA Conference in Orlando, and has since helped shape programming for kids and teens. Michael has played an integral role in the dad sessions and onsite support at each conference.
A huge thank you to ALL attendees of the 2019 JA Conference in Houston and Minneapolis, as well as JA Conference Chairs Bob and Jennifer Tonning; special guests Meg Maley, Paige Goehner and Koo Koo Kanga Roo, plus the planning committee, onsite volunteers, subject matter experts, physicians and guest speakers.
Special thanks to National Presenting Sponsor AbbVie; Supporting Sponsors Amgen, Novartis and Alpha Omicron Pi and all exhibitors and in-kind donors.
Jim Salanty, vice president, U.S. Rheumatology at AbbVie says the company’s mission aligns with the JA conference mission: To foster positive experiences for children living with juvenile arthritis and provide access to important resources for disease management and support. “[JA Conferences] also provide these children the valuable opportunity to meet and connect with others who may be navigating a similar journey living with their condition,” he says.
Save the dates for the 2020 JA Conference, where we will have ONE epic “Family Reunion.” We hope to see you there!
JA Conference – Orlando
July 23-26, 2020
The school year is an opportunity to enjoy some of the best memories with friends. But for many kids with juvenile arthritis (JA) and other rheumatic conditions, being in school can sometimes bring feelings of isolation. Many kids with JA have never met a friend with the same diagnosis. They never get to take a break from a serious illness that’s often quite painful, makes the immune system go haywire and can be downright lonely at times.
Summer break, however, is another story! The Arthritis Foundation provides camp programs and our National Juvenile Arthritis Conference in two locations, giving kids with JA the experience of a lifetime and the chance to feel included. Meeting other kids with the same disease fosters courage and strength and teaches them how to advocate for themselves.
That’s why July is Juvenile Arthritis Awareness Month — a time when we put a spotlight on JA, so more people know what living with it is like. We also take the opportunity to encourage parents who suspect their child may have arthritis to consult a pediatric rheumatologist as soon as possible. Early diagnosis and treatment are the best bet for avoiding permanent joint damage and improving the chance of remission.
JA affects 300,000 families
An estimated 300,000 families in the U.S. face the major disruptions JA can cause, making the disease worth acknowledging and doing something about. More children battle JA than do those who have cystic fibrosis, juvenile diabetes and leukemia combined.
Juvenile arthritis and related diseases in kids have some things in common with adult arthritis, but they’re not the same. Typically, there’s joint pain, swelling, redness and warmth. Otherwise, the many types of JA affect different kids in different ways. They can involve the eyes, skin, heart, lungs and gastrointestinal tract.
JA can make it hard to do schoolwork or take part in social and afterschool activities. Many kids with JA feel misunderstood and isolated. Some are bullied. Read one teen’s short memoir about living with arthritis.
What can you do to make a difference?
Your support provides the resources families need to live their best life.
- We host JA camps nationwide to bring kids together who understand each other and no longer have to feel alone.
- Our National JA Conference, being held this year in Houston, July 18-21, and in Minneapolis, Aug. 1-4, will empower hundreds of families to take control of JA.
- JA Power Packs help newly diagnosed children and their families get adjusted and connect with others for tips and support.
- Watch our short video about Conquering Childhood Arthritis, which is among the Arthritis Foundation’s highest priorities. You’ll see what we’re aiming to accomplish through research.
- Join our Live Yes! Online Community, where there’s a special thread for JA families to exchange challenges and tips, plus you can ask health experts your questions.
- Our Live Yes! Connect Groups for JA Parents bring moms and dads together in person to share their troubles and triumphs, with more local groups forming all the time.
- Consider signing for the PARTNERS registry, which needs people from diverse communities to participate in surveys, provide ideas and contribute to projects.
- Clinical trials to advance JA research may be just a short drive away, so check for nearby studies and consider getting involved.
- Watch this research video to learn how clinical trials work and the variety of roles you can play in JA research.
Ways to help raise awareness
Helping get the word out about juvenile arthritis and other pediatric rheumatic conditions will generate more support for research and resources.
- Take to social media using the hashtag #StrongerThanJA. Tell everyone you know that you’re fighting JA and urge them to join you.
- It’s a snap to add your snapshot to our photo pool — and automatically unlock a $5 donation from cheerity.com.
- Share your story about the ups and downs of living with JA, which will inspire others to get behind our cause.
- Dedicate a special JA Awareness Month donation in honor of yourself or a JA Warrior you love and care about.
Below are excerpts from a blog posted on Teen Ink by Lexus Isabel, age 16, of Toledo, Ohio. Her submission about living with childhood arthritis is part of a national site that gives teens the chance to publish creative work and opinions on issues that affect their lives. Soon after it posted, her blog was in the #1 spot for memoirs.
Lexus has supported the Arthritis Foundation for several years, including participation in Walk to Cure Arthritis and Jingle Bell Run. She has also attended JA camps and done media interviews representing the juvenile arthritis community.
Dear Juvenile Rheumatoid Arthritis,
You are the term that has been engraved into my soul since birth. You are genetic and you manipulate my immune system to think there is something wrong with my joints. My immune system attacks me, causing inflammation and pain.
You’re a 7-year-old girl with an innocent face, wincing in pain. You are the smell of antiseptic as she enters the infinite number of hospitals and doctors’ offices. You taste like the toxic medication that chokes the girl twice a day. You feel like the piercing needles penetrating her skin, tears racing down her face, the constant, throbbing pain that stole away her innocence.
Most of all, you are the sounds you cause. You’re the “Mommy, it hurts,” as I scooch down the stairs because I can’t take the pain. You’re a mother screaming, “Tell me what’s wrong with my baby!” You’re the taunts of the children. You are me.
I want to thank you for this. If I was not bound to you, I would not be the person I am. I’ve become a compassionate, stubborn, determined young lady who wears her heart on her sleeve. I want to change the world. I want to help people and see the impact I make. I have this dream because of what you put me through. I don’t want others to be put through this, so I will be a person who guides them through their journey.
Yes, I am grateful to you, but I would never wish you upon someone else. You are genetic. You could have sprung upon one of my sisters. I would gladly balance this burden upon my shoulders for them.
You’ve taught me the importance of family. When you took hold of my life, everyone was scared, especially me. They hid their fear, took my little hands, and we stood against you as a family. When you were finally given a name, my grandmother, Mimmi, dove into research. My aunt helped me with my first injection of medication. My parents were probably hit the hardest by you. I’m so lucky to have them because they have been so supportive along the way.
I questioned my Mimmi about why God would do this to me. I snapped at her, “If God is so great, if he really does love me, then why would he do this to me?” She looked down and grabbed my hand. “Because he knows you are strong enough.” At the time I was just a little girl who had grown up too fast. Now I’m a strong young lady who is still a little scared of the future, but I know I am strong enough. These words have guided me through my life.
Then one day, I heard these words: “I think we can say you are in remission.” I let out a shaky breath and a laugh. My joy spilled out of my eyes. For the first time in years, I felt like I could breathe. I was floating. You were the burden that weighed me down but let me go and allowed me to fly. My parents’ smiles radiated in my direction as we realized all the things that seemed impossible could now be achieved. You are a battle that I will continue to fight because I will always be their little trooper.
You can read the entire blog on Teen Ink.
The Arthritis Foundation is proud to announce that the 2019-2020 Winterhoff Arthritis Scholarship application process opens January 31, 2019. Continue reading Winterhoff Arthritis Scholarship Applications Now Being Accepted
Superheroes Seen in Washington DC – the 2018 National Juvenile Arthritis Conference Begins Today!
Nearly 900 superheroes – kids, teens, young adults and their families – from across the country, have been seen banding together in Washington DC!
DC serves as the second location of the Arthritis Foundation’s signature National Juvenile Arthritis (JA) Conference. The JA Conference is a unique opportunity for families, kids, teens and young adults affected by JA and other rheumatic diseases to connect with others and spend the weekend networking, learning, sharing tips and forming friendships.
Today, approximately 1,000 superheroes – kids, teens, young adults and their families – from across the country, have answered the call and have made their way to Bellevue, Washington.
Bellevue – a city located across Lake Washington from Seattle – is the first location of the Arthritis Foundation’s signature National Juvenile Arthritis (JA) Conference. The JA Conference is a unique opportunity to connect families, kids, teens and young adults affected by JA and other rheumatic diseases who spend the weekend networking, learning, sharing tips and forming connections that can last a lifetime.
Today is the last day to apply for a JA Conference travel award!
In its 34th year, the Arthritis Foundation’s National Juvenile Arthritis Conference has brought kids with rheumatic diseases and their families together for a weekend full of education, inspiration and connecting with others on a similar journey.
For many families managing with a constant stream of medical expenses, it may not be feasible to plan for a weekend conference that, depending on where you may live, might include extensive travel. The Arthritis Foundation is pleased to offer limited financial assistance to families wishing to attend the JA Conference who meet certain criteria.