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

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Articles This Issue

Real Life Action Heroes
Through struggles and pain, the Mitchell family has learned to cope with JA by taking action. Read their story.

Why 2013 Was An Important Year for Juvenile Arthritis
Rheumatologists weigh-in on the important news regarding JA medications, treatments and genetic discoveries and explain what it could mean for your child. Read more.

Know Your Limits When Parenting a Child with a Chronic Illness
Learn how to manage the challenges of parenting a child with a chronic illness, and find balance. Learn more.

JA Conference Scholarship Applications are Here!
Arthritis Foundation scholarships offer families ‘golden tickets’ to this year’s JA Conference. Find out how to apply.

Local JA Teen Walks to Cure Arthritis
Meet Claire, a teen with JA who is this year’s National Walk to Cure Arthritis youth honoree. Hear her story.

Pediatric Transitions: Starting Down the Road to Independence
The Arthritis Foundation launches a new resource to help families transition their child to adult care. Learn more about it.

How Can You Make a Difference in Washington for Children with JA?
Three advocacy priorities aim to make change. Learn how to join the fight.

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

 

 


 

Real Life Action Heroes

Through struggles and pain, the Mitchell family has learned to cope with JA by taking action. 

 

Mitchell familyFamily Name: The Mitchell Family of Sandy, Utah
Carson and Meghan, Siobhan (8), Audrey (6), Will (5), Ethan (3), and Baby #5 coming in July!
Location: Sandy, Utah

Q & A with Meghan Mitchell of the Mitchell Family (pictured at left with daughter Siobhan and Rudolph at the Jingle Bell Run/Walk)

What is Siobhan’s story of JA diagnosis?
Siobhan (pronounced Shi-vaughn) was diagnosed at age 5 ½. I noticed in April of 2011 that Siobhan’s left knee was very swollen. I kept asking her if she was in pain, but she always said that she felt fine. She never mentioned an injury or falling or having any trouble at all. But the swelling just wouldn’t go away and, in fact, got worse. We went to her pediatrician who knew exactly what was going on (thank goodness) and he diagnosed her with Juvenile Idiopathic Arthritis (JIA) in both knees and both ankles.

Has Siobhan had any challenges or ups and downs since diagnosis?
We struggled at first with getting the right medication to help Siobhan. We started on a daily anti-inflammatory along with steroids. When that didn’t seem to be helping, we moved on to another medication which didn’t do what needed to be done fast enough. In August of 2011, Siobhan had her first joint injection in her left knee and right ankle. Eventually, Siobhan would have more joint injections, some negative side effects from her medication and we chose to put her on a gluten free diet. Siobhan was able to achieve remission with medication. Unfortunately, Siobhan is now back on medication as she has flared up again.

Siobhan has been very lucky. While we struggled with a few aspects of medication and getting the disease under control quickly, we did have an easier time getting diagnosed than most kids and for that we are extremely grateful. Siobhan has stayed overwhelming positive and is very comfortable sharing her story with friends, family and acquaintances. JA has definitely made her a stronger little girl and has brought our family together as we rally around her and fight for the cause of finding a cure for JA!

How did you first get connected with the Arthritis Foundation?
Our first connection with the Arthritis Foundation came in June 2011, just two weeks after Siobhan was diagnosed. We had the privilege of putting together a team and participating in our first Walk to Cure Arthritis in Salt Lake City. It was amazing to see so many families and community members come together for the event. It was very inspiring for our family.

What were some of the ways the Arthritis Foundation initially supported your family?
The Arthritis Foundation gave us a place where we could really feel like we were making a difference. By getting involved as volunteers at the Foundation, we feel like we are helping to get everyone that much closer to a cure. We’ve been involved in fundraising for several events and seeing that hard work be put to use in the form of programs and research has given us a sense of belonging.

Additionally, if I have ever felt that I needed information about my daughter’s disease, I’ve always been able to find an answer or the resources to find the answer that I needed from the Arthritis Foundation. I’ve become great friends with the staff at our local Foundation and I have always felt that they sincerely care about my daughter’s well-being.

What are some of the Arthritis Foundation programs and events in which you have taken part?
We have been a part of several JA Family Days which have given us a lot of relevant information including how we could prepare our daughter for issues in school, how to help her through some anxiety issues, as well as research that is currently going on in our area. We have participated in many quotefundraising events including the Walk to Cure Arthritis and the Jingle Bell Run/Walk for Arthritis. All of these events have increased our understanding of the disease and have given us more tools to help our daughter.

What is one of your favorite JA program experiences?
My favorite JA program experience was the first JA Family Day that we attended in September 2011. This is where we first started to make connections with the staff at the Arthritis Foundation, which is awesome! Our eyes were widely opened to all of the aspects that we needed to think about during our daughter’s journey with this disease. That information included how to set up a 504 plan, the fact that remission was a real thing that was possible, and how we could help her transition when she gets older. It was our first real introduction into life with the disease and it was very eye opening!

Why should other JA families become involved with the Arthritis Foundation?
As a result of being involved as a volunteer at the Arthritis Foundation, I feel like I’m dialed into the arthritis community more so than if I was trying to do this all on my own without support. And like I said before, I feel like we are really engaged in the fight and our family is really able to see the extent that the Arthritis Foundation helps those who suffer from the various forms of arthritis. And when you have a child with JA, being a volunteer gives you ownership over the fight!

How can kids with arthritis and their siblings tell their stories as part of arthritis advocacy?
We had always worried about what would happen when Siobhan’s classmates found out about her disease or gave her a hard time on the off chance that she couldn’t keep up on the playground or in PE class. We found that the best way to combat that was to arm those students with as much information as possible. In talking with her teachers over the years (she’s now in second grade), we decided that the best way to do that was by giving her class presentations about her disease. We put together PowerPoint presentations where she describes her disease, what it means, how it’s treated, and what it means for her in the long run. The kids have all seemed receptive and she has never experienced any negative feedback.

Siobhan has also had the chance to be involved in various events as well. In December 2011, Siobhan was the Youth Honoree at the Jingle Bell Run/Walk for Arthritis and she had the opportunity to tell her story to that audience. Additionally, this past year, at the Jingle Bell Run/Walk 2013, Siobhan was involved in the planning and even got to introduce her doctor who was being honored as the medical honoree.

Has your family’s experience with arthritis advocacy helped you speak out on other issues related to arthritis?
In April of 2012, Siobhan and I had the opportunity to attend the Arthritis Foundation Advocacy Summit in Washington, DC. While there, we were able to speak to several lawmakers about the importance of funding arthritis research and about patients’ access to treatment. These issues are very important to us and we will always do our best to advocate for our daughter. I have also had several opportunities to discuss with people the importance of communicating with their schools and knowing their rights in regards to what a school needs to do for their children.

What else would you like to share with families?
This fight is not easy. Nobody knows that better than the kids and parents who deal with it on a daily basis. But for us, it has been made easier by our involvement at the Arthritis Foundation. We feel the support of the staff and we see how much good they do.

 

Find out more:

Find the local ways that you can get involved at our Volunteer Resource Page.

 

 


 

Why 2013 Was An Important Year for Juvenile Arthritis

Rheumatologists weigh-in on the important news regarding JA medications, treatments and genetic discoveries and explain what it could mean for your child. 

 

Reprinted from KidsGetArthritisToo.org / By Kelli Miller, ELS

girl with balloonsDuring 2013, there was a lot of news regarding the treatment of juvenile idiopathic arthritis (JIA). But navigating the news – and understanding the research – can be complicated and time-consuming, particularly when you’re caring for a child with arthritis. We asked pediatric rheumatology experts how new drug approvals, advances in drug delivery and other treatment-related news could impact your child’s outcome and care.

“There is a great deal of excitement regarding a wide spectrum of juvenile arthritis treatments that are helping more and more children with JA have improvement and experience remission of their disease,” says Ann Reed, MD, chair of the department of pediatrics and adolescent medicine at the Mayo Clinic, Rochester, Minn.

Here’s what you need to know.

A Boom for Biologics

Biologics continue to have a meaningful impact for many kids with juvenile arthritis. In 2013, the U.S. Food and Drug Administration approved two biologics for children with JIA and studies involving a third have shown promise.

  • Canakinumab(Ilaris) is the first biologic to be approved specifically for kids with active systemic JIA (sJIA), an uncommon but especially severe form of childhood arthritis. Canakinumab blocks interleukin-1 (IL-1), a protein that helps trigger inflammation. The drug’s May 2013 approval came after studies involving sJIA patients aged 2 to 19 showed significant symptom improvement in most of those who took the drug. "To have effective therapies that control systemic features is a huge breakthrough,” says Daniel Lovell, MD, associate director of the division of rheumatology at Cincinnati Children's Hospital Medical Center and professor of pediatrics at the University of Cincinnati in Ohio. “Despite advances [in treatment] for other types of JIA, we really don't have good treatments for sJIA, the form that is most severe and associated with the highest mortality."
  • Tocilizumab (Actemra) received FDA approval in 2013 for kids with polyarticular JIA. (It was already approved for kids with sJIA and adults with rheumatoid arthritis [RA].) It blocks an inflammation-provoking protein called interleukin-6 (IL-6). How will this new drug fit into your child’s treatment regimen? Some pediatric rheumatologists say the verdict is still out. “Most pediatric rheumatologists will continue to use tumor necrosis factor (TNF) inhibitors as the first-line biologic treatment for JIA, because of their years of experience and comfort with them. But tocilizumab is definitely an option for a child whose arthritis does not improve enough with TNF inhibitors. “The overall impact of tocilizumab on the treatment of polyarticular JIA, in general, may not be huge, but for the individual child who is not doing well with the other biologics, it could be life changing,” says Timothy Beukelman, MD, a pediatric rheumatologist and associate professor of pediatrics in the division of rheumatology at the University of Alabama at Birmingham School of Medicine.
  • Rilonacept (Arcalyst) is another drug that blocks IL-1. Research presented in 2013 showed that, for kids with sJIA, it works and it is relatively safe. But, it is experimental and not approved by the FDA as of January 2014. Dr. Beukelman says “despite being effective and safe, rilonacept is unlikely to have a huge impact on the overall treatment of sJIA in the near future, because it does not appear to be significantly different from the currently available IL-1 inhibitors,” which include canakinumab (Ilaris). A potential drawback for this drug: Rilonacept is a weekly injection, instead of a monthly one like canakinumab. That means more frequent shots for your child.

Less Painful Methotrexate Shots
A new delivery method for methotrexate may give kids with arthritis a less painful way to take the medicine. The FDA approved a single-dose auto-injector form of methotrexate (Otrexup) in late 2013 for adults with RA and kids with active polyarticular JIA a who cannot tolerate or do not get better withquote first-line therapies, including nonsteroidal anti-inflammatory drugs (NSAIDs). “[The auto-injector] provides a quicker shot. That should be less painful and scary for kids,” says Donald Miller, PharmD, professor and chair of the pharmacy practice department at North Dakota State University in Fargo, N.D. Another thing that makes Otrexup different than existing methotrexate injections: It’s pre-filled. That means parents no longer have to draw up a syringe and fill it from a multi-dose vial.

Aggressive Treatment Is Best
Children with JIA who are aggressively treated with multiple medications soon after the disease appears spend more time without symptoms than kids treated with a single drug or who start aggressive treatment later, according to research presented at the American College of Rheumatology 2013 Annual Meeting. This finding upholds an earlier study showing that early, aggressive JIA treatment works better than regimens that start slowly and step up to stronger therapies over time. In the studies, the aggressive therapy involved the combination of methotrexate, entanercept (Enbrel) and prednisolone.

New Guidelines for Treating sJIA
The American College of Rheumatology (ACR) released updated treatment recommendations in 2013 for kids with sJIA. The changes add informationtreatment recommendations in 2013 for kids with sJIA. The changes add information on canakinumab (Ilaris), tocilizumab (Actemra) and rilonacept (Arcalyst), which were not included in the 2011 guidelines. The new guidelines also recommend anakinra (Kineret) as a first-line treatment option for children with active systemic features, such as fever and rash, along with inflammation of the joint lining (synovitis) or macrophage activation syndrome (MAS). The update also helps guide the treatment for kids with sJIA and synovitis who are at risk for MAS. “If your child has JIA and has changes in blood counts or liver tests, ask his or her doctor about the possibility of MAS, which is common in sJIA,” advises Dr. Reed. Ask your doctor how the new recommendations affect your child’s treatment plan.

Knee Implants For Kids
Knee implants in young people with JIA are durable – but they don’t last quite as long as implants used in older patients with arthritis, according to results from a multicenter study. About 90 percent of knee replacements last 15 to 20 years in adults – but in kids, only about 75 percent of knee implants last that long.

JIA Genetic Link Breakthrough
The largest study-to-date of genetics and JIA has linked 14 new genes with the disease. The international study team also confirmed the link between three other genes and JIA. The breakthrough discovery will help researchers better understand what causes JIA and how the disease progresses, which could open new areas of research and treatment. The research appeared online in Nature Genetics in April 2013.

“The power of these studies is to take this information and merge this with other new biological data. Taken together, this data is extremely powerful in helping us improve diagnosis and treatment options,” says Dr. Reed.

 

 


 

Know Your Limits When Parenting a Child with a Chronic Illness

Learn how to manage the challenges of parenting a child with a chronic illness, and find balance. 

 

dad and childParenting a child with a medical condition like Juvenile Arthritis can be challenging and draining. For parents, it helps to have good communication and boundaries when raising a child who battles a chronic illness. Every family member must cope with the diagnosis and learn how to effectively deal with the daily struggles.

If you're a parent in this situation and want to learn some ways to manage these challenges, you can find some helpful tips in this article by Andrea M. Risi, LPC on GoodTherapy.org:

Read the article: Know Your Limits When Parenting a Child with a Chronic Illness

 

 

 


 

JA Conference Scholarship Applications are Here!

Arthritis Foundation scholarships offer families ‘golden tickets’ to this year’s JA Conference. 

 

JA conferenceGreat West Region Scholarships
The Arthritis Foundation, Great West Region is hosting the National Juvenile Arthritis (JA) Conference from July 3-6, 2014 in Keystone, Colorado!

We are pleased to announce the availability of a limited number of scholarships for families or young adults wishing to attend this national conference.

Scholarship recipients must agree to attend the entire conference, become an active volunteer with the Arthritis Foundation, and serve as an Arthritis Advocate / spokesperson for their local Arthritis Foundation office. Your local Arthritis Foundation office will work with you to define your role in this capacity.

If you are interested in attending the JA Conference, please apply!

Download the scholarship application here. 

Return your completed application to:

Arthritis Foundation
Katie Levine
P.O Box 8113
Missoula, MT 59807

Or email your application to Katie Levine at klevine@arthritis.org.

Your application must be received by April 1, 2014.

Learn more about the JA Conference.

 

Volunteer at the National JA Conference
Make a difference by volunteering at the 30th Annual National JA Conference in Keystone, CO, July 3-6! The JA Conference is life-changing for families in need of support and information. It is the only opportunity for families, across the nation, affected by juvenile arthritis to come together for up-to-date medical and research information, to connect with other families who share similar experiences, and to let families, siblings, and youth with arthritis know they are not alone.

There are many options available to aid in the success of this conference and impact children living with Juvenile Arthritis and their families. To learn more about opportunities, please visit the JA Conference Volunteer Page.

 

 

JA Facebook

 

 

Have you LIKED the JA Conference page on Facebook? Get connected to this vibrant page for JA families to receive all the latest news on this year’s National JA Conference – speakers booked, entertainment updates, tours of Keystone, Colorado and much more!

www.facebook.com/JuvenileArthritisConference

 

 

 

 

 

 


 

Local JA Teen JA Walks to Cure Arthritis

Meet Claire, a teen with JA who is this year’s National Walk to Cure Arthritis youth honoree. 

 

honoree videoClaire Brennan, from Denver, Colorado, is this year’s National Walk to Cure Arthritis honoree. Though life with arthritis can be a struggle, Claire is active in Arthritis Foundation events. She attends her local juvenile arthritis camp, is a guest writer on the Kids Get Arthritis Too website, and raises funds for both Jingle Bell Run/Walk and Walk to Cure Arthritis. Claire fundraises for a cure and hopes that one day soon she’ll be arthritis-free!

Find out more about Claire’s story, learn about her team and watch her video story.


About the Walk to Cure Arthritis
The Walk to Cure Arthritis raises funds and awareness to fight the nation's leading cause of disability. We aren't just helping the millions of people who live with arthritis pain; we're funding research that's getting us closer to a cure. We'll have information about arthritis and fun activities for the entire family. WTCA logoLet's walk together, support each other and raise funds to find a cure for arthritis!

Why Walk?
When participants join these events, they feel empowered to make walking part of their lifestyle. Walking decreases joint swelling and pain associated with arthritis, builds muscles around the joints and increases flexibility and endurance.

Teams and individuals raise funds in their community to honor loved ones living with arthritis and to help the Arthritis Foundation deliver its mission to improve the lives of the over 52 million Americans affected by arthritis.


Find your local Walk to Cure Arthritis

 

 

 


 

Pediatric Transitions: Starting Down the Road to Independence

The Arthritis Foundation launches a new resource to help families transition their child to adult care. 

 

transitionIt’s never too early to start thinking about the inevitable transition from pediatric to adult care. As parents, there are ways to encourage your child to build the skills needed to manage his or her health independently as early as age 12 (or earlier). As kids and teens, there are tasks you can start working on as well as questions to ask yourself to help you become independent and reach your goals.

Because it’s never too early to start preparing for transition, we are excited to announce the launch of our online Pediatric Transition toolkit and website to the JA families of the Arthritis Foundation, Great West Region. After recognizing the importance of and the preparation that must go into transitioning from a pediatric to an adult rheumatology provider, the Arthritis Foundation decided to create a program to address the needs of adolescent patients with rheumatic diseases. The objectives of this program are to:

  1. Provide young patients with the tools they need to make the transition.
  2. Educate pediatric and adult rheumatologists so that they can better assist their patients with the transition.
  3. Facilitate the sharing of young patients’ experiences and provide emotional support through the creation of social interactions.

The website has two components: A resource library with links to health information/resources for teens and families and a Transition Toolkit including a transition-readiness assessment and customized skill-building guide.

We have received enthusiastic feedback about the website from teenagers taking part in our local JA programs as well as pediatric and adult rheumatology providers in Northern California and now it’s your turn to take part!

toolkitPlease visit www.JAtransition.org and let us know what you think. Explore topics such as going to college, getting a job, creating a health summary, scholarship information, managing stress, and much more in the resource library. You can also create an account and take the transition-readiness assessment to build your own customized transition toolkit. With so many great links all in one place, we hope this becomes your go-to guide for transition.

We are also excited to announce that the Pediatric Transition program will be launched at the National JA Conference this summer in Keystone, Colorado. Plans include parent, teen, and young adult breakout sessions on this topic as well as a young adult social gathering. Help us make this a success by visiting the site in advance so you can share your thoughts about it with other parents and Arthritis Foundation staff. This resource is for YOU and YOUR children, so help us make it the best it can be!

 

 

 


 

How Can You Make a Difference in Washington for Children with JA?

Three advocacy priorities aim to make change. 

 

Driven by our advocates’ feedback, the Arthritis Foundation is focused on three federal priority issues this year and our success depends on a strong army of educated advocates who are ready to take action. Join the ranks of our Arthritis Advocates and learn more about how you can help. 

End Discrimination Against Specialty Medications - Pass the Patients Access to Therapies Act
Learn more: http://www.arthritis.org/advocacy/advocacy-priorities/high_costsharing/
Listen to the Issue/Expert Briefing: https://arthritis.webex.com/arthritis/lsr.php?RCID=fd3350fac4d8f7ea9f5e67f16c828cae

Increase Access to Pediatric Rheumatologists
Learn More: http://www.arthritis.org/advocacy/advocacy-priorities/pediatricrheumatologist/
Listen to the Issue/Expert Briefing: https://arthritis.webex.com/arthritis/lsr.php?RCID=e3bd1b51f9eb3a9dec4595c6dec50c91

Fund Arthritis Research at the Department of Defense
Learn More: http://www.arthritis.org/advocacy/advocacy-priorities/dod-research/
Participate live in the Issue/Expert briefing Monday, February 24, 2014 (6:00 pm Mountain/5:00 Pacific/4:00 Alaska)
Click to Register

We’re counting on you!

 

summit

 

The Arthritis Foundation Virtual Summit is coming soon.  Stay tuned for details! 

 

 

 

Bonus! Are you interested in state issues too? Do you want to become more engaged in state-level advocacy? Contact Johanna Lindsay (jlindsay@arthritis.org), our regional Vice President for public policy and advocacy to learn more about state initiatives and opportunities.

 

 

 


 

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

 

site visit

 

Some of the members of the JA Conference planning committee met in Keystone, Colorado to explore the Keystone Resort, site of the 2014 JA Conference.

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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