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AFamilies
News for kids and young adults affected by juvenile arthritis and their families
Spring 2014

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Articles This Issue

New JA Powerpacks are a Must-Have for Families
Find out how you can get one of these new JA resource kits. Learn more.  

Seven Ways Teens Rock JA
Having JA doesn't exactly give you super powers, but living with it can put you in a class by itself compared to other teens. Read more.

The National JA Conference – Early Bird Registration Ends Soon!
Find out the latest information about this Keystone, Colorado event and how it can help your family better manage arthritis. Discover how.

JA Families Support Walk to Cure Arthritis Events
Hundreds of local families affected by JA made a difference at Walk events this spring. Learn more.

Juvenile Arthritis Camp to be Hosted in Alaska
CampARCTIC will offer a unique, fun camp opportunity for families affected by arthritis. Find out more.

Camp Sign-Ups are Here 
Are you registered for your local JA Camp or an upcoming JA Family Day? Find out more.

Shape the Future of Local JA Programs
Complete our JA program survey and give us your feedback on how we can make our JA resources meet your family’s needs. Begin the survey. 

Photo Postcards

Community Connections

Connect with Us

 

 


 

New JA Powerpacks are a Must-Have for Families

Find out how you can get one of these new JA resource kits.

power pack logo

 

A diagnosis of juvenile arthritis (JA) can turn life upside down and make you feel powerless. You may not know what to expect, what treatment options are available or what to do. You may be worried and have a lot of questions.

The Arthritis Foundation understands and cares. That’s why we offer our JA Power Pack – a toolkit with useful information and tools to assist newly-diagnosed children and teens, as well as their parents. These resources were designed to give you and your family the POWER to make living with JA easier.

Knowing what to expect and how to deal with it is the key to better living with JA. Our JA Power Pack will help get you started. Now the power is in your hands!

Register for your FREE JA Power Pack today! 
(For families living in Alaska, Northern California, Colorado, Idaho, Montana, Oregon, Utah, Washington, and Wyoming)

 

 

 


 

Seven Ways Teens Rock JA

Having JA doesn't exactly give you super powers, but living with it can put you in a class by itself compared to other teens.

 

1. You use your super powers

friendsHaving an unpredictable condition like JA, with its flares and remissions, requires a lot of flexibility in attitude and schedule. It puts a lot of pressure on kids your age. Yet the teens who manage JA the best seem to find a way and embrace a go-with-the-flow attitude that helps ease inevitable disappointments. When JA flares up, they are prepared for extra doctor visits, medications, and limited activities. When the disease eases, they’re ready for school-related activities, whether they are planned or spontaneous.

“My JA will always be with me and I've learned to embrace rather than fight it,” Gabrielle B. says. There are times when I will have good days, weeks, months, years, and then there are times when I will not have my good days. But that doesn't stop me from doing what I love and going to school.”

2. You’re really tuned in

If you’re learning to drive or are a new driver, you know how you have to be aware of everything that’s going on in, out, and around the car. The same goes for being tuned into your body when you have JA. It’s the barometer for your disease and your health.

As you get older, you’ll get more and more attuned to the signs that you’re about to have a flare or are on the mend. You’ll know when to rest and when to alert your parents or doctors about a symptom.

3. You play the courage card

You face difficult treatments with a brave face, even when you hate them, like Sydney H. does. “[Needles were] my biggest fear, but I had to get over it in order to feel better,” she says. “gamesOnce I got over the fear of needles, they seemed like nothing. Now, the swelling in my joints went down a lot and I feel much better,” she adds.

When kids laugh at you at school you’re brave: “I go to summer camp center for courageous kids,” says Claire S., 13. “It helps remind kids with illnesses like me [that] you’re not alone, so do not give up. It does not matter if people make fun of you or you feel left out. Just don't give up.”

4. You’re a planner and a problem-solver

Maybe you’re going to need help getting your books from the car to your locker. You’ll make a plan. Maybe it’s better to go out for a sport that has one practice a week rather than three. You’re on it. Stiff joints hurt in the morning? You’ll warm them up and go to school an hour late. JA teens learn to “make it work.”

See Your School Action Plan for More Ideas

5. You talk like an expert

If you’re like many JA teens, you’ve been dealing with JA for so that you’ve become a true expert. You can toss around the names of the drugs that you’ve tried. You know what worked and what didn’t work. As time goes on, every tidbit you learn about your disease and how it’s treated will help you manage it by yourself later.

Being empowered means understanding what your disease is, its name, how it works, and how to help yourself feel better. The more you know, the more you do for yourself, the better you feel!

Learn How to Be Your Own JA Advocate

6. You deal with the “why me” but still hold your head high

Sometimes JA makes kids grow more slowly. Sometimes the disease makes you walk funny. Most kids know that it's hard any time that you are different – whether it’s biggest, smallest, or being the one with the puffy knees. Being different means you have to work harder at being strong and being proud and having hope for a better future. Learning about your disease and how to handle it (both the practical matters and how it makes you feel) can make you grow up a little faster.

friends“I tell other kids that have [JIA] to always keep your head up,” Caitlin R. says. “Someday they’re going to find a cure. So until then, keep your life going the way you want it to and you can find a way around obstacles in your life.”

Talking about your disease and meeting other JA kids helps you if you’re feeling lonely or mad about having JA – and it’s fun! “I talk about what it’s like to have JA and to raise interest and funding to help kids with JA. By getting out in front of people, I can explain the disease and help others understand what the pain is like,” says Ry B., 14,who spoke to Congressional leadership during an Advocacy Summit in Washington, D.C. “And, it has helped me meet other kids with JA.”

7. You have big dreams

It took years for Erin M. to finally receive a diagnosis as one of the youngest patients with osteoarthritis, she says. After that, there was nothing stopping her. “My doctor was able to get me back into soccer, karate, skiing, and biking. I've had six other surgeries since then to clean my knees out and repair the dislocations, but ultimately my doctor is trying to buy me time because I need knee replacements. I have the body of a 75-year-old woman, but I still go to school, work, and play sports.”

Erin is now a pre-med student in college. “I want to go into orthopedics so I can get another athlete back in their game like my doctor did for me. I live in constant pain but I learned to use it as fuel for my journey. Like the old saying goes, "Do not fear pain, for as long as you feel it you know you are still alive. Well, I'm alive and pain has become not only a major part of my life, but it’s a motivator to push my body to the limits every single day.”

 

 

 


 

The National JA Conference – Early Bird Registration Ends Soon! 

Find out the latest information about this Keystone, Colorado event and how it can help your family better manage arthritis.

 

ja conference logo2014 Juvenile Arthritis Conference
July 3-6, 2014
Keystone, Colorado


The Arthritis Foundation’s 30th annual Juvenile Arthritis Conference offers the unique opportunity to meet other families going through similar challenges, share stories, learn new ways to manage JA and most of all, have fun! Early bird registration and hotel reservation deadline is May 28, 2014.

 

What makes the JA Conference so unique?

You can:

  • Make new friends and catch-up with other JA families
  • Learn the most up-to-date information on JA, research and treatments from the top experts in the field
  • Benefit from activities targeted to help kids with arthritis and their siblings 
  • Network with countless other parents/caregivers whose children face the same challenges
  • Have great, family fun 
  • Enjoy the beautiful summertime weather in the Colorado Rocky Mountains

 

JA Conference Early Bird Registration Ends May 28

JA Conference early bird registration ends on May 28. Be sure to lock-in your registration savings and register you and your family by that date!

registrationschedule

 

 

 

 
 
 
 
 
 
 
 
 
 
 
 
 
 

 

 

 
Volunteer at the Conference

Volunteers are a key component to the success of the JA Conference and volunteering is a wonderful way to “give back” for all the Conference provides for its attendees. If you would like to volunteer for a few hours while attending the Conference please visit http://snipurl.com/jaconfvolunteer for the various days, times and opportunities to help!

If you have questions regarding volunteer opportunities at the JA Conference please contact either Steve Smith, Volunteer Committee Chair, at smithfamilyzoo@cox.net or (703)203-6007 or Jill Lysengen, Arthritis Foundation Staff, at jlysengen@arthritis.org or (720) 644-4398.

 

Follow the Fun on Facebook

LIKE the JA Conference page on Facebook to see all the latest happenings on the JA Conference. Recent sample posts:

 

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JA Families Support Walk to Cure Arthritis Events 

Hundreds of local families affected by JA made a difference at Walk events this spring.

 

WTCA logoWhat’s in a name? The Arthritis Walk is now the Walk to Cure Arthritis. It emphasizes that the Arthritis Foundation raises funds to support research to find a cure. Juvenile arthritis is one of the three focus areas of the research; the other two are osteoarthritis and rheumatoid arthritis.

Kids with arthritis and their families are an important part of the success of the Walks, either as Youth Honorees representing the public face of juvenile arthritis, or as the focus of a team of family and friends. In raising funds for research, everyone can be a star!

This year many kids in the Great West Region publically put a face on arthritis:

Bellevue, WA – Natalie, diagnosed at 1; now 6 ½
Natalie wanted to hold her birthday party at the Walk to Cure Arthritis. She reasoned that arthritis hurts kids and her friends wanted to know more about arthritis and how they could help find a cure. Natalie’s family attended KAT-FISH Family Camp in Washington last year.

Colorado Springs – Isabella, diagnosed at 2; now 4
Bella and her family joined the Walk to Cure Arthritis to raise awareness that kids get arthritis too. Like many kids with arthritis, Bella has endured pokes, prods and procedures that hurt. Isabella’s family chose the theme “Be Brave with Bella” for their team since they feel everyone can learn about bravery from her example.

Denver – Claire, diagnosed at 2; now 12 (also National Youth Honoree)
Claire and team worked hard to raise as much money as possible to fund research to find a CURE for Arthritis one day soon! Claire never lets her arthritis get her down, but that is sometimes quite a challenge. She receives weekly injections to minimize the effects of her disease, but it is always still with her. Despite her arthritis, Claire is a competitive swimmer and was named to this years' Colorado All Stars swim team.

Claire was also the National Youth Honoree for the Walk to Cure Arthritis, representing the 300,000 kids throughout the United States who have been diagnosed with JA or a related rheumatic disease.

San Francisco – Katie, diagnosed at 10; now 15
Katie says she has JIA, but it does not define her. Even though some days are very hard, she is still able to enjoy volleyball, cooking and her dogs. She advises other kids with JA to remember that arthritis is only part of who they are.

Vancouver, WA – Reidyn, diagnosed at 1; now 3 ½
Reidyn is a good example of how the right treatment, even if it sounds awful, can make a world of difference. The day after doctors screwed a plate in her knee to help it grow correctly, Reidyn was doing somersaults. Reidyn and her family enjoyed Camp JAM in Oregon last year.

Tri-Valley Walk - Lina, diagnosed at 3
The Tri-Valley Walk to Cure Arthritis was dedicated to the memory of Lina (Angelina) who was the Youth Honoree in 2011. Diagnosed with sJIA at age 3, the Walk to Cure Arthritis was an important occasion for Lina. Each year, on the day of the walk, arthritis wasn’t the defining factor that set her apart from others in a negative way. 

We honor the memory of Angelina "Lina" Robinson with the Robinson Family and team Angelina's Angels.


heroesIn the past years, boys and girls of all ages have served as Honorees at the Walks to Cure Arthritis and the Jingle Bell Run/Walk. What they have in common is a desire to speak out about rheumatic disease in children and raise money for research.

If you (child and family) would like to declare “I am the Face of Arthritis” and nominate your family member as an event honoree, please contact your local Arthritis Foundation office.




You can show your support of these great Youth Honorees by making a donation to their team or to their local event. Donations are still being accepted!

Find your local Walk to Cure Arthritis.

 

 

 

 


 

Juvenile Arthritis Camp to be Hosted in Alaska

CampARCTIC will offer a unique, fun camp opportunity for families affected by arthritis.

 

campersThis summer, the Arthritis Foundation is partnering with the Healthy Alaska Natives Foundation and Southcentral Foundation to host CampARCTIC. The camp will take place from June 5-7, 2014 at Camp K on Kenai Lake in Cooper Landing, Alaska. CampARCTIC (ARthritis Can’t Tame my Independence and Courage) is an annual camp created specifically for Alaskan children with juvenile arthritis and one parent or caregiver. CampARCTIC provides an opportunity for families to meet, build community, and create connections that will last far beyond the weekend at camp.

“The connections JA families make at camp are priceless… they contribute immensely to each camper’s health and well-being by helping them build a support system to use throughout the year,” says Katie Levine, Program Coordinator at the Arthritis Foundation. “We are so excited to continue building our partnership with Healthy Alaska Natives Foundation and Southcentral Foundation to serve families in Alaska.”

camperThis year, numerous activities such as archery, canoeing, swimming, arts and crafts, and even a sauna will be offered to help campers build a network of friends and relax over the fun-filled weekend. Healthcare professionals from Alaska Native Medical Center and Seattle Children’s Hospital will also share information about arthritis and resources available from the Arthritis Foundation. Every meeting, meal, and activity will be a chance for families to share their personal experience with the disease, connect with people who understand their situation and come to a better understanding of juvenile arthritis.

To learn more about CampARCTIC or to be added to the waiting list, contact Katie Levine at 406-203-3019 or klevine@arthritis.org.

 

 

 


 

Camp Sign-Ups are Here

Are you registered for your local JA Camp or an upcoming JA Family Day?

 

JA Camps 

campersJA Camps exist to 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!

Visit the JA Camp Event Pages below to learn more about each program.

 

arctic logoCampARCTIC - Cooper Landing, AK
Kids with JA (ages 5-18) and one parent/guardian 
June 5 - 7, 2014
Camper registration is full. Contact Katie Levine to be added to the waiting list. 

 

Camp MilagrosCamp Milagros - Livermore, CA
Watch the Camp Milagros Video 
Kids with JA ages 8-13
July 14-18, 2014  
Volunteer
Camper registration is full. Contact Mary Elise Cooper to be added to the waiting list. 

 

JA Camp circle

JA Camp - Estes Park, CO
Kids with JA ages 8 - 16
July 19-24, 2014
Volunteer
Camper registration is full. Contact Pam Snow to be added to the waiting list. 

 

KAT FISH camp

KAT-FISH Camp - Stanwood, WA
Kids with JA ages 0-18 and families
July 25-27, 2014  
Volunteer
Camper registration is full. Contact Andrea Aho to be added to the waiting list. 

 

 

Camp JAM

Camp JAM - Canby, OR
Kids with JA ages 0-18 and families
August 8-10, 2014
Register or Volunteer

 

 

LimberlimbsCamp Limberlimbs - Gold Creek, MT
Kids with JA ages 6-17
September 19-21, 2014
Register or Volunteer

 

 

JA Family Days

family programJA Family Days are fun-filled days for the whole family! Kids and teens enjoy activities and games while parents participate in educational sessions facilitated by pediatric rheumatologists and other health professionals.  Educational sessions address topics such as disease management techniques, updates in medication and treatment, parent support, family dynamics, transition and school issues.

JA Family Programs offer the opportunity to meet other families who face similar challenges and to get your questions answered by a health professional in a relaxed, non-clinical setting.

Utah JA Family Day
Saturday, October 11, 2014
Loveland Living Planet Aquarium
12033 S Lone Peak Pkwy, Draper, Utah 84020
10 AM – 1:30 PM
Snacks and lunch will be provided
Register now

Colorado JA Family Day
Save the Date: October 25, 2014

Idaho JA Family Day 
Fall 2014

 

 

Teen Retreat

Teen Retreat

The Teen Retreat is for teens, ages 14-18 and in high school, with juvenile arthritis. The program gives teens information on self-managing their arthritis at a time when independence, self-reliance and peer pressure become important parts of a teenager’s life.  The retreat helps teen develop lifelong skills in many aspects of life, including self-management of their disease.

Teen Retreat
October 17-19, 2014
Nature Bridge, Golden Gate Recreation Area
Sausalito, CA
Learn more

 

 

 

 


 

Shape the Future of Local JA Programs

Complete our JA program survey and give us your feedback on how we can make our JA resources meet your family’s needs.

 

survey

We want to know you better! Please take a few minutes to fill out our JA Family Survey. We want to offer programs and services that meet your needs, so we’d like to hear from you what we’re doing well, what we could improve upon, and how we can partner together in this fight against arthritis!

 

Complete the JA Survey

 

 

 


 

Photo Postcards from Across the Region

 

 

advocatesArthritis advocates Beth and Yolanda Barnes, from Boise, Idaho, spoke at the Arthritis Foundation’s Advocacy Summit in Washington D.C. in March. Beth is affected by juvenile arthritis and the mother daughter team spoke about the challenges of living a long way from the closest pediatric rheumatologist.


Find out more about this year’s Advocacy Summit:
http://www.arthritis.org/washington/about-us/advocacy/advocacy-summit/

 

Have your own JA photo postcard?
Submit it to wbalmer@arthritis.org

  

 

 

 


 

 Community Connections

 
 community connections

Find upcoming Arthritis Foundation juvenile arthritis programs in your area, resources, books, brochures and ways to connect with other families. Learn more.

  

 

 


 

 KGAT

Connect with Us

Contact Andrea Aho for more information about JA programs and services throughout the Arthritis Foundation, Great West Region.

Andrea Aho
aaho@arthritis.org
888.391.9389 / Option 7 / Ext. 101

 

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