Tag Archives: juvenile arthritis

The 2021 Virtual National Juvenile Arthritis Conference Was a Wonderful Success

A big THANK YOU to all JA families, planning committee members and sponsors for making the 2021 Virtual National Juvenile Arthritis Conference a huge success! This year, we welcomed more than 850 total attendees — including 373 first-time participants — from 42 states and three different countries.

The JA Conference offered 71 virtual sessions and gave attendees the opportunity to connect and network with other moms, dads, families, siblings, caregivers and, of course, young adults, teens and kids with JA who share similar challenges and triumphs. Even in these trying times, we showed the world that together we are stronger than JA!

“My daughter was recently diagnosed and had never met any kids with JA. She enjoyed meeting and playing virtually with kids that experience the same things she does. The JA Conference gave her a sense of community and showed her that she wasn’t alone.”

—JA Mom and Conference Attendee

The expanded conference program offered more than 30 live sessions on a variety of topics including our COVID-19 session series and a conference favorite session: a live chat with Natalie Decker, NASCAR driver and arthritis warrior, who joined families to share her inspirational story and answer questions from conference attendees. The JA Conference also introduced an SJIA track to the conference program and provided a variety of sessions for kids and teens including another conference favorite: the Panda Bear Clinic.

Miss any of the JA Conference content? Browse the JA Conference session videos.

 This year, Katy & Bridget Carter of Winnetka, California, received the 2021 Steve and Liz Smith Legacy Award for their many years of volunteer service to the JA Conference and the JA community. Katy and Bridget were honored for developing, implementing and building the sibling program at the JA Conference. Check out the surprise presentation and touching reaction during the closing session. The JA Conference also recognized outstanding volunteer leadership by awarding the 2021 JA Awards of Excellence. The awards are presented to a physician, youth leader, young adult, parent and health care professional who show exceptional leadership and commitment to the JA community. This year’s winners include: Lily Laurent, Dawn Hafeli Award for Youth Leadership; Haley Mapp, Young Adult Leadership Award; Anne Jackson, RN, Patti Rettig Award for Health Care Professional Leadership; Dr. Ashley Cooper, Earl Brewer Award for Physician Leadership; and Bob and Jen Tonning, Parent Leadership Award. Congratulations award winners!

“Thank you, JA Conference! I learned a lot in the sessions about how to make the medical transition smoother. The conference empowered me to know that I have choices in my care!”

—JA Young Adult and Conference Attendee

A huge thank you to ALL attendees of the JA Conference, as well as conference chairs, Jenn and Shane Cox; special guest, Natalie Decker; plus, the planning committee; volunteers; subject matter experts; physicians; and guest speakers. And special thanks to National Presenting Sponsor, Abbvie; Supporting Sponsor, Alpha Omicron Pi; and additional supporter, Genentech.

 Save the dates for the 2022 National Juvenile Arthritis Conference, where we are excited to return to an in-person event. Next year’s event will feature a “Family Reunion” theme and will be held July 14 to 17, 2022, in Orlando, Florida. We hope to see you there!

2020 Virtual JA Camp Banner

We are Camp Stronger than JA, virtually!

This summer may look different, but we will still have opportunities to connect at JA Camp. Our new virtual JA Camp experience brings the magic of summer camp to all campers with JA, wherever you happen to be!  While we cannot replace being in person together, we are excited to give campers an alternative option for connection and fun.

The Arthritis Foundation is proud to offer free, at-home summer camp experiences across the United States for kids and teens with juvenile arthritis and related childhood rheumatic diseases. Juvenile arthritis (JA) camps are sponsored nationally by Alpha Omicron Pi Fraternity and Foundation (AOII), as well as supporting partners Bristol Myers Squibb, Genentech, a member of the Roche Group, and the Saal Family Fund in memory of Jessica Saul. Thanks to sponsorship and donations, virtual camp is provided at no cost to families.

Alpha Omicron Pi Fraternity’s Executive Director Kaya Miller shares, “For many of our members, our support of the Arthritis Foundation Camp program is one of the most compelling aspects of our work together. Chapters and members are especially passionate about fundraising the dollars that help children and youth attend a JA summer camp. AOII understands this passion and is proud to champion this important JA initiative.”

Our Virtual JA Camps will offer a few of the programs and traditions campers are used to at in person camp – mindfulness, movement, arts and crafts, camp songs and more! Campers will interact through live video sessions, giving them the chance to see faces of familiar friends and counselors. All Virtual JA Campers will also be mailed an activity workbook. Through our camp programs, even virtually, campers gain a greater understanding of their own diagnosis and treatment, build strong peer-support networks and develop the skills they need to become effective leaders, advocates and champions in their everyday lives. A camper from our Teen Retreat in California shared, “I felt like Virtual JA Camp really helped me discover options for moving forward with college and independent doctors’ appointments with JA.”

Volunteer co-camp director Claire Peckenpaugh from Camp KODA in Utah shared, “Camp KODA has been a vital resource for our kids living with rheumatic conditions in the Intermountain West region. By moving camp to an online, virtual platform, we’ve been able to safely connect with those from all over our market, Utah, Idaho and Montana, as well Nevada and Wyoming. While online camp isn’t the same as the annual in-person camp, we are thrilled to have kids and young adults connect with one another to discuss challenging topics such as: advocacy, living with chronic conditions and mental health. Thanks to the help of our volunteers and medical staff from Primary Children’s Hospital, we’ve had the opportunity to host 59 kids at our virtual camp this year! The fundraising efforts of both the National and Local Arthritis Foundation chapters have given us this opportunity to provide a safe environment for our kids living with chronic illness to come together and realize there are other kids out there just like them. As we’ve told the kids time and time again, we are stronger together as a community.”

Visit our camp website to register for an Arthritis Foundation Virtual JA camp today. We hope to connect with you online!

 

 

 

 

JA Camps Make a Life-changing Difference for Kids With Arthritis

From Cooper Landing, Alaska, to the beaches of West Palm Beach, Florida, the Arthritis Foundation is proud to host camp programs for kids and teens with juvenile arthritis and related childhood rheumatic diseases. Besides providing a safe and secure camping experience for children and teens, some locations also offer family camps – an opportunity for the entire family to attend together. Continue reading JA Camps Make a Life-changing Difference for Kids With Arthritis

Live Yes! Connect for JA Parents: Q&A with Jessica Ward, JA Parent Facilitator

In 2018, the Arthritis Foundation launched its Live Yes! Connect pilot program for parents of children living with juvenile arthritis and other childhood rheumatic disease. In addition to providing emotional and social support, the program offers educational resources and seminars to help parents improve the quality of life for their children. Jessica Ward, whose 11-year-old daughter Mercy was diagnosed with JA at age 4, is the sole parent facilitator for the JA parent group in Columbus, Ohio. We chatted with her to hear her insights about the parent group, including benefits, future plans and the best ways to get involved.   Continue reading Live Yes! Connect for JA Parents: Q&A with Jessica Ward, JA Parent Facilitator

2017 juvenile arthritis camps

Juvenile Arthritis Camps: Why JA Camp is an Experience You Can’t Miss

From Mobile, Alabama to the shores of Waialua, Hawaii, the Arthritis Foundation is proud to host camp programs for kids with juvenile arthritis and related childhood rheumatic diseases. Camp programs provide a safe and secure camping experience for both children and teens. Some locations also offer family camps – an opportunity for the entire family to attend together.

Katy Carter of Los Angeles says, “When our daughter Rhiannon was seven years old, she wanted to meet other kids with arthritis. She wanted to know that she wasn’t alone, that there were other kids just like her. This was a defining moment in our lives. Of course she wanted to meet other kids. Of course she was feeling isolated. She had this strange disease that none of her friends had ever heard of and didn’t understand. As her mother, I wanted to make everything perfect for her little life and protect her from the reality of her diagnosis. But, I couldn’t be that friend her age that ‘gets it’.”
Continue reading Juvenile Arthritis Camps: Why JA Camp is an Experience You Can’t Miss

Vieau Arthritis Memoir

Turning Pain into Inspiration: Arthritis Memoir Earns an “A”

The assignment was to write a memoir on the most influential moment in your life. As simple as it sounds, for 16-year-old Kimberly Vieau, the task wasn’t that easy.

“We were supposed to pick a happy memory,” said Kimberly. “But I don’t have many happy memories from my childhood.”
Continue reading Turning Pain into Inspiration: Arthritis Memoir Earns an “A”

Marina Gomez Juvenile Arthritis

From Gymnastics Gold to JA: How Gymnastics & Juvenile Arthritis Changed Marina Gomez’s Life

Marina Gomez of Wichita, KS has been a gymnast since she was just 4-years-old. In 2012 and 2013 she won consecutive gold medals at the Junior Olympic National Championship in competitive trampoline. Marina was looking forward to a long gymnastics career but after she was diagnosed with juvenile arthritis (JA) in 2013, her gymnastics career was cut short.
Continue reading From Gymnastics Gold to JA: How Gymnastics & Juvenile Arthritis Changed Marina Gomez’s Life

Art for Arthritis

Art for Arthritis: Getting Creative in the Fight Against Juvenile Arthritis

When a child or teen is diagnosed with juvenile arthritis (JA), they might feel alone or not able to do activities they’ve done easily in the past. Art for Arthritis, an Arthritis Foundation fundraising event being held in three cities in September, gives children and teens diagnosed with JA or a rheumatic disease a feeling of togetherness and creative expression. Through these life-changing events, kids are paired with a professional artist and together, they turn a potentially challenging and painful situation into beautiful and inspiring pieces of art.
Continue reading Art for Arthritis: Getting Creative in the Fight Against Juvenile Arthritis

JA Camp Joint Adventures

From Juvenile Arthritis to JA Camp Counselor – Rachel Hadel Inspires Others

Rachel Hadel was diagnosed with polyarticular juvenile arthritis (JA) in March 2011 at age 14. “When I was diagnosed I didn’t know what I was getting into, it was very overwhelming,” says Rachel. The feelings of being overwhelmed and not knowing anyone else with JA inspired Rachel to become involved with the Arthritis Foundation. Her involvement eventually led her to a role as a counselor at Camp Joint Adventures, a JA camp in the Kansas City area.
Continue reading From Juvenile Arthritis to JA Camp Counselor – Rachel Hadel Inspires Others