All posts by Arthritis Foundation

Young Adult Spotlight: Shane Cox – A Voice for the Invisible

A junior at Chico State University in California, Shane Cox might appear like just your average 20-year-old student. But when you take a closer look, you’ll notice something different about him. It’s not the handicapped plate on his pickup truck or the Humira injections he gives himself that really sets Shane apart from his peers. Instead, it’s his dedication to giving other kids with JA hope for their future that really makes him special. It’s his pay-it-forward attitude that made it easy to convince him to be the 2021 National JA Conference chair. And to make it even better, he’s splitting the role with his mom, Jenn.

“I remember being a kid and just feeling invisible,” says Shane. “When my mom found the Arthritis Foundation, and I started seeing that there were other kids like me — who struggled to walk or didn’t know how to even tell people about their disease — I started to come out of my shell. I found a place I belonged, and it helped give me confidence and hope.”

For Shane’s mom, Jenn, she learned firsthand just how difficult it can be to raise a son with a chronic disease. From the years of wrong diagnoses and countless missed school days to the hurtful comments and feelings of exclusion, Jenn has navigated the often rocky road of parenting a child with JA.

“It’s so tough in the beginning,” says Jenn. “We spent so much time just searching for answers. When you finally have them, you feel both relieved and overwhelmed.”

Together, Shane and Jenn are helping other families overcome that initial feeling of worry and fear that comes with a JA diagnosis. In their roles as JA Conference co-chairs, they are each sources of strength for others. Jenn is able to understand how parents are feeling and help reassure them that they are not alone. And for the kids, Shane gets to be the young adult they look up to — feeling hopeful that they, too, will have success, happiness and control over their arthritis.

“I hope that when families see us, they realize that the pain and worry that comes with JA doesn’t have to be the defining thing about them,” says Jenn. “Instead, their diagnosis means they get to be part of a new community, a new family and a new mission.”

 From Parent-Led to Patient-Led
As a mom, Jenn naturally took the lead when it came to Shane’s care. She diligently managed a myriad of pills and medical appointments. She wrote school excuses and made arrangements for makeup tests or missed class work. But as Shane grew into a young adult, managing his disease and all the trials that come with it became less of a tag-team event and more of a solo mission.

“My rheumatologist was actually the one who suggested I begin leading my care instead of my mom,” says Shane. “I was 16 or 17 and I think my doctor knew it would take time to totally transition, so we began the process early.”

Like any mom, Jenn was initially scared at the thought of not being involved in Shane’s health care. But by transitioning slowly, she was able to pull back more easily, one step at a time. And both she and Shane slowly redefined their roles.

“I kept attending appointments until Shane was 18, but he led the discussions with the doctor,” says Jenn. “By the time he was an official adult, he started making his own appointments and going to them alone. It wasn’t easy to let go at first, but I knew I had to. It’s still hard at times, but he’s doing a great job.”

While Shane is now in charge of his own health care, he hasn’t stopped looking to his mom for guidance and support. In fact, he often speaks with her about changes in his care and relies on her input when making decisions.

“It’s a different relationship now, for sure,” says Shane. “But I trust my mom’s advice. She knows a lot more about this world than I do, so I don’t mind asking for her opinion or her help when I need it.”

 Moving Forward Together
Shane and Jenn have been longtime members of the Arthritis Foundation family. For over a decade — since the day Shane was diagnosed — they’ve been familiar faces at camps, conferences, family days and more. As Shane grew up, his relationship with his mom evolved, and his commitment to making the most of life and helping others who are just beginning their journey grew stronger.

Jenn has been Shane’s biggest supporter, helping him learn to take control of his disease and advocate for his health and happiness. As Shane gets ready to celebrate his 21st birthday this summer, his JA diagnosis that brought so many mixed emotions seems like a lifetime ago — but the memories he and his mom have made during his journey will last a lifetime.

“Sure, there are sad moments in our journey,” says Jenn. “But there are so many wonderful ones that we would never have without the Arthritis Foundation. We’ve travelled across the country and met families who have become lifelong friends. And we got to do it together, as a family.”

For Shane, he’s focused on the future. He’ll graduate from college in 2023 as an environmental scientist. And while he knows that he’ll soon transition away from the JA world, he hopes to spend the next couple of years inspiring kids who are just beginning their journey.

“The camps and conferences made me feel like I was just like everyone else,” says Shane. “It’s through these events that I learned to love who I am and to not be embarrassed by my disease. Knowing there are other kids out there who understand what you are going through is life changing. I’m proud to stand up and be that for someone else, because I know how much of an impact it had on me.” — HEIDI BRAGG

 

The Arthritis Champions Scholarship is OPEN!

The Arthritis Foundation is proud to announce that the 2021-2022 Arthritis Champions Scholarship application is open! The Arthritis Champions Scholarship is generously funded by Dr. & Mrs. Walter J. Winterhoff, Dr. Smriti Bardhan and Alpha Omicron Pi.

The Arthritis Champions Scholarship of $5,000 per academic year is awarded annually to deserving students with arthritis or a related rheumatic disease who:

  • Impact the arthritis community, serving as positive role models and leaders
  • Live their best life while empowering others to do the same

Since 2010 the Arthritis Champions Scholarship has supported 51 college students, awarding nearly $570,000 altogether in scholarship awards. Each eligible application is anonymously reviewed by leadership volunteers from across the country. Applications include essays covering challenges and accomplishments despite arthritis, future goals, and arthritis community involvement and impact. Students awarded an Arthritis Champions Scholarship not only strive to live their best life despite arthritis, but also empower others who share similar experiences.

Eligible Scholarship Applicants:

  • Have doctor-diagnosed arthritis or related rheumatic disease.
  • Have and maintain a 2.5 or higher GPA (unweighted).
  • Are United States citizens or legal and permanent residents of the U.S.
  • Are accepted into an accredited undergraduate program, graduate program or medical school in the U.S.
  • Are enrolled full-time each semester.
  • Are engaged Arthritis Foundation advocates, fundraisers, participants, volunteers and/or supporters.

Not all eligible applicants will be selected as scholarship recipients. Eligible scholarship recipients may apply for up to four years total. Funds may be used toward tuition, books and supplies only.

No member of Arthritis Foundation staff, national board of directors, Arthritis Champions Scholarship Committee or their immediate family members shall be eligible for a scholarship award.

Find additional general scholarship details and an online application here: arthritis.org/scholarship 

If you have questions, please contact scholarship@arthritis.org.

 

Arthritis Champions Scholarship

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 can-do spirit. The Arthritis Champions Scholarship program is generously funded by the Walter J. and Kathryn M. Winterhoff Endowed Scholarship Fund, Dr. Smriti Bardhan College Scholarship Fund and Alpha Omicron Pi (AOII).

Walter J. and Kathryn M. Winterhoff Endowed Scholarship Fund
Walter J. and Kathryn M. Winterhoff Endowed Scholarship Fund was created to provide an educational scholarship program for students with rheumatic diseases. Walter and Kay Winterhoff were Tucson residents and had passion for the work of the Arthritis Foundation. This passion evolved from Kay’s own experiences living with arthritis and her refusing to let it get in the way of her love for tennis and golf. This scholarship started in fall 2010 at three public universities in Arizona: Arizona State University, University of Arizona and Northern Arizona University.

2020 Bardhan recipient, Meaghan Victory

Dr. Smriti Bardhan College Scholarship Fund
New for 2020–2021, the Dr. Smriti Bardhan College Scholarship Fund was created to helpthe next generation with arthritis achieve their goals.  Dr. Bardhan lived with boundless energy and a zest for life.  She did not let her rheumatoid arthritis curb her independence, drive and positive energy. Those that knew her best were inspired by her perseverance through the debilitating state of her arthritis.  She was dedicated to her community and as a scientist she was committed to cracking the genetic code to revolutionize treatments for future generations. Dr. Bardhan, like millions of others living with arthritis, strived each day to live her best life.

 

Champion College Scholarship Program
New for 2021–2022, Alpha Omicron Pi is supporting the Champion College Scholarship Program, helping the Arthritis Foundation to grow the number of awards to 20. Alpha Omicron Pi’s International Philanthropy is arthritis and for more than 50 years they have been a proud partner of the Arthritis Foundation. In addition to Champions College Scholarship, AOII dollars support the National Juvenile Arthritis Conference, JA Camps, JA Power Packs, Connect on Campus and arthritis research. Alpha Omicron Pi (AOII) was founded in 1897 at Barnard College of Columbia University in New York City. AOII has over 190,000 initiated members and 141 current installed collegiate chapters, with 158 active alumnae chapters across the United States and Canada. Alpha Omicron Pi is an international women’s fraternity promoting friendship for a lifetime, inspiring academic excellence and lifelong learning, and developing leadership skills through service to the Fraternity and community.

  • Since 2010, the Arthritis Foundation has supported 51 college students, granting $568,750 in total scholarship awards. Nearly 1,000 applications have been received since expanding to a nationwide program in 2017.

Congratulations to the 2020 – 2021 scholarship recipients:

Kayla A.                     University of Miami
Jacob A.                    Penn State University College of Medicine
Ethan B.                     Ohio Wesleyan University
Andrew C.                 Albany College of Pharmacy and Health Sciences
Lauren D.                  Wake Forest University
Anna M.                     Medical University of South Carolina
Brianna M.                 University of California at Los Angeles
Emily M.                      Arizona State University
Olivia P.                      Grand Canyon University
Valerie R.                   University of Mississippi
McKenzie R.               Saint Michael’s College
Emily T.                        Springfield College
Meghan V.                Saint Joseph’s College of Maine
Ashlyn W.                   Ohio Dominican University

The 2021-2022 Arthritis Champions Scholarship program will open in January 2021. Additional details and application will be posted at arthritis.org/scholarship.

If you have questions, please contact scholarship@arthritis.org.

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!

 

 

 

 

Teen Fighting JA Says Knowledge Is Power

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

A Mother’s Fight to Free Her Son From Pain

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

2020 Juvenile Arthritis Conference Banner

Introducing the 2020 Juvenile Arthritis Conference Theme: Family Reunion, Stronger Together

Do you live with juvenile arthritis? Then you’re part of our extended family!

In 2020, we’ll celebrate connections and spend quality time together at a Family Reunion like no other. From across the country, at one EPIC event, JA families will gather to draw strength from each other and become more powerful than ever. For long-timers and newcomers alike, the National JA Conference is the place to be for fun in the summertime! Continue reading Introducing the 2020 Juvenile Arthritis Conference Theme: Family Reunion, Stronger Together

Arthritis Champions Scholarship

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

The 2019 National Juvenile Arthritis Conference Welcomed Almost 1,800 Attendees

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
Renaissance Orlando

 

Houston Kicks Off the 2019 National Juvenile Arthritis Conference Today!

Houston Kicks Off the 2019 National Juvenile Arthritis Conference Today!

 Over 800 kids, teens, young adults and their families from across the country are landing in Houston, Texas, for the first of two National Juvenile Arthritis (JA) Conferences the Arthritis Foundation is hosting this year. This week’s conference will kick off our 35th annual gathering of JA families during JA Awareness Month, and offers a variety of events and informational program tracks focused on education, connecting with others and fun. Continue reading Houston Kicks Off the 2019 National Juvenile Arthritis Conference Today!