News for kids and young adults affected by juvenile arthritis and their families
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Articles This Issue
Young Champion for Change
Ivy Liston’s seventh birthday party became her way of supporting other children with juvenile arthritis like her. Read her story.
Jingle for JA
Show support for your local JA community by participating in a Jingle Bell Run/Walk. Find your local event.
New Year, New JA Camp Dates
Get ready for s'mores and save the date for your local JA Camp in 2015. Find out more.
College Bound? Plan Ahead for the Transition
Discover tips for making a smooth and successful transition to college. Learn more.
Growing Up With JA
A Free Webinar for Families. Learn more.
Give in Your Community this Holiday Season
Participate in local giving campaigns in Alaska and Colorado. Learn how.
Shop and make a difference! Find out more.
Ivy Liston’s seventh birthday party became her way of supporting other children with juvenile arthritis like her.
Ivy Liston is one of five children, and the only member of her family living with juvenile arthritis (JA). Diagnosed when she was a one year-old, Ivy has struggled with the effects of JA for her entire life. At 18 months, this once very active toddler was rendered immobile until she received 21 joint injections and went on other medications to help with inflammation in her eyes.
Today, six years later, Ivy is on a competitive gymnastics team, a veteran attendee of Oregon’s Camp JAM for kids with arthritis, and a young advocate for others with JA.
“Ivy is proud of her arthritis. It gives her confidence. I think it’s because of Camp JAM and the support that she gets from the Arthritis Foundation,” commented her mother, Megan.
Ivy loves Camp JAM. Her family started attending when she was a two-year-old in 2009 and has attended every year since. It didn’t surprise Megan when Ivy announced that she didn’t want birthday presents this year - she wanted to ask her friends and family to donate to Camp JAM and the Arthritis Foundation.
On the day of her seventh birthday party, Ivy waited in anticipation of her friends’ arrivals and hoped that they would bring gifts in support of camp. Guests kept arriving, giving her checks and cards, and in one day, young Ivy raised more than $200. She was so surprised and excited that she couldn’t wait to share the news. She gathered all of the donations and wrote a note to the Arthritis Foundation staff that said, “For my birthday I told them that I wanted them to donate instead of presents, and they did!”
Ivy’s excitement is contagious, and we are so thankful for young supporters like her. Thank you, Ivy! Your support will help Camp JAM grow even stronger.
You can make your own contribution to programs like Camp JAM… here’s how!
Show support for your local JA community by participating in a Jingle Bell Run/Walk
The season of Jingle Bell Run/Walks is here! These festive, fun, family-friendly 5K events take part across the Arthritis Foundation, Great West Region. Each event is designed for the whole family and has games for kids as well as youth fun runs. Funds raised support the Arthritis Foundation in its mission for better research, programs and awareness of diseases like juvenile arthritis.
Participating in the Jingle Bell Run/Walk gives children with JA a chance to feel special and supported, but it also empowers their parents, siblings and whole community to feel like they can take action against arthritis, too.
“We hear so many great stories of families that form a Jingle Bell Run/Walk team and then use it as an opportunity to educate their child with JA’s friends, teachers and classmates about juvenile arthritis,” says Andrea Aho, Regional Manager, Juvenile Arthritis at the Arthritis Foundation, Great West Region. “Instead of making the child with arthritis feel different, it can actually help them feel more accepted by giving their classmates a chance to join their team, come to the event, make team costumes or T-shirts and have lots and lots of fun.”
The Great West Region has an incredible group of youth honorees for this year’s Jingle Bell Run/Walks. Each of these phenomenal kids and teens have great stories to share about growing up with juvenile arthritis, overcoming obstacles and getting their community involved in their Jingle Bell Run/Walk.
There is also an option to join a JA Families team at each event. Once you register, select the “JA Families” team from the drop-down menu. When you do, you become a part of a collective nationwide team of JA Families who will be at each Jingle Bell Run/Walk across the country!
Get ready for s’mores and save the date for your local JA Camp in 2015.
Juvenile Arthritis Camps provide education, networking and fun for kids and teens with arthritis, and in some cases, for the whole family! Campers take part in activities designed to help them increase self-confidence, improve arthritis self-management, and develop leadership and communication skills all while making new friends who share similar challenges. At our family camps, parents/caregivers and siblings get to join in the fun too!
And don’t forget about the National JA Conference in Orlando, Florida from July 23-26, 2015. Our National JA Conference is an unforgettable annual family event, where more than 1,000 kids with arthritis, parents and siblings come together to meet, learn and play. Get more details.
Discover tips for making a smooth and successful transition to college.
We know the last thing teens want to think about during winter vacation is school. But, the lull in classroom and extracurricular commitments can be a great time for parents and kids to start discussing the New Year and new adventures ahead…like college!
Going away to school is a reality for many teens these days. Along with many other changes (like dining hall food and a quirky roommate), parents are not around to provide for their teen’s medical needs. This means that teens need to learn things like: what types of medications they take, how often, how to re-fill prescriptions, and how to make medical appointments. Teens need to learn how to do these things on their own so they can be successful in their transition to adulthood and adult health care.
It’s a good idea to begin preparing your child for this transition while they are still under your direct guidance and supervision. That way, when they make a mistake, you are still there to help them recover and take steps to correct it.
So, if your daughter is eagerly awaiting college acceptance letters to arrive in the mail, take this opportunity to talk with her about taking a greater role in her health care and education. Encourage her to set up her next doctor appointment or to research the disability services available at her top three schools. By taking these small steps now, you’re helping to ensure a successful transition to college.
To help prepare YOU to begin this conversation, we’ve compiled a few helpful resources…
Know Your Teen’s Educational Rights
Students in postsecondary schools are protected under Section 504 of the Rehabilitation Act and Title II of the Americans with Disabilities Act (ADA), but the requirements vary from those that apply to public elementary, middle and high schools. Individualized Educational Programs (IEPs) are not available at the college level. Learn more about the laws that apply to your teen.
Create a Transition Toolkit
Young people with rheumatic diseases have to take on new responsibilities as they enter the world of adult medical care. The Arthritis Foundation Transition Toolkit is designed to help youth and their families develop the skills they need to successfully make the leap to independence. Take a brief health care skills assessment and create a customized Transition Toolkit that meets YOUR needs. Or check out the resource library to learn more about: Communicating with your doctors, organizing your health care, going to college with arthritis, managing stress, eating well, and much more!
Create your transition toolkit at www.JAtransition.org.
Get Tips from a University Disability Services Office
A university disability services director gives tips on making the transition from high school to college and making arrangements for registration, talking with instructors, and setting students up for success in college classes.
Stock Up on Helpful Brochures
This FREE guide for teachers gives an overview of juvenile arthritis and how it may affect your student. Topics range from ways to help with physical limitations and emotional challenges to working with the student’s parents. Order your free brochures today!
Say Thank You to Those Who Support Your Child Now
Consider sending holiday cards to your child’s current teachers to thank them for their ongoing support. You can also use these cards as an opportunity to give them an update on your child’s health. Are they on a new medication? Are they trying new exercises or stretches at home to alleviate stiffness? Share the news with them. Teachers often only hear from parents when there is a problem or crisis. Taking time to send them a note to simply say thanks may go a long way.
A Free Webinar for Families
Juvenile Arthritis (JA) can be a roller coaster ride for kids and the whole family. Learn about the latest in JA treatments, research and more at this free, interactive webinar.
Growing Up With JA
A Free Webinar for Families
Wednesday, December 17, 2014
12:00 p.m. – 1:00 p.m. (EST)
In October, teens gathered for a weekend of fun, team-building and conversations about transitioning to adulthood in Sausalito, CA. Good times were had at the Teen Retreat in Northern California!
Participate in local giving campaigns in Alaska and Colorado.
Support the Arthritis Foundation, Anchorage Office in the Pick. Click. Give. campaign!
Make a difference in the lives of the over 110,000 Alaskan adults and 800 Alaskan children affected by arthritis by supporting the Arthritis Foundation in this year's Pick.Click.Give. campaign. Your support will enable the Arthritis Foundation to provide community education programs for those with arthritis, scholarships for children to attend juvenile arthritis camps, and more. http://tinyurl.com/ArthritisPCG
Colorado Gives Day on December 9
Colorado Gives Day is the perfect chance for you to partner with the Arthritis Foundation and make a big impact thanks to stretch funds offered by Community First Foundation and FirstBank. On December 9, your gift will be stretched when you give through ColoradoGivesDay.org. Colorado Gives Day. It’s more than just a day. It’s a movement that inspires and unites thousands of donors to support their favorite causes online.
Shop and make a difference!
AmazonSmile is a website operated by Amazon.com that lets customers enjoy the same wide selection of products, prices, and convenient shopping features as on Amazon.com. The difference is that when customers shop on AmazonSmile, 0.5% of the price of eligible purchases will be donated to the charitable organizations selected by customers. You can select the Arthritis Foundation as your AmazonSmile charity of choice... simply go to: http://smile.amazon.com/ch/38-3826066.
888.391.9389 / Option 7 / Ext. 101