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

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Articles This Issue

Local Fall JA Family Days
Join us for family education and fun at two upcoming Utah and Colorado events. Find out more. 

Rally your Team for the Jingle Bell Run/Walk!
Fun, festive, family-friendly Jingle Bell Run/Walks are coming up this holiday season. Find your local event!

Meet Annie Viola
Annie Viola is the parent representative for the Great West Region on the National Juvenile Arthritis Alliance Leadership Group. Find out how she plans to make a difference for families.

Boost Your Skills as an Arthritis Advocate
View these handy tip sheets to learn how to be a better teen, parent or state advocate. See how.

Happy Campers in the Great West
Hundreds of campers and families enjoyed JA Camp activities this summer. Read their stories.

Tales from the JA Conference
The 2014 Juvenile Arthritis Conference was a success. Find out through these photo stories some of the ways it helped families.

Announcing the Juvenile Arthritis Power Packs
Sign-up for your free JA Power Pack and get connected to some helpful, cool resources for kids with JA. Learn more.

JA Conference 30th Anniversary: Milestones and Memories Video
View this powerful retrospective of the history of juvenile arthritis over the past decades. See it here.

JA Teen Retreat in California
Learn more about this great event for teens with JA.

AmazonSmile
Shop and make a difference! Find out more.

Community Connections

Connect with Us

 

 


 

Local Fall JA Family Days

Join us for family education and fun at two upcoming Utah and Colorado events.

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

Kids and teens with arthritis and their immediate family members are welcome. Anyone under the age of 18 must be accompanied by an adult. Volunteers are needed, too. 

Colorado JA Family Day

Saturday, October 25
10 AM - 2 PM
National Jewish Health
1400 Jackson Street
Denver, Colorado 80206
$20/family 
Register your family today or apply to volunteer.
For more information, contact Pam Snow at psnow@arthritis.org or 720-644- 4395.

Utah JA Family Day

Saturday, October 11
10 AM - 1:30 PM
Registration will begin at 9:30 AM
Loveland Living Planet Aquarium
12033 South Lone Peak Parkway
Draper, UT 84020
$10 per person, ages two and under are free (includes entry to the aquarium, snacks and buffet lunch)
Register your family today or apply to volunteer.

This great location offers interactive and hands-on fun for the whole family! Kid ages 3-12 will explore the aquarium in groups led by trained volunteers. Teens will get to know one another in our Teen Lounge designed especially for ages 13-17. Kids two years and under are welcome to join their parents and caregivers for interactive discussions with health experts and networking with adults who share similar concerns.

For more information contact Katie Levine at klevine@arthritis.org or 406.203.3019.
 

 

 

 

 


 

Rally your Team for the Jingle Bell Run/Walk!

Fun, festive, family-friendly Jingle Bell Run/Walks are coming up this holiday season.

jbrw list

 

 

 


 

Meet Annie Viola

Annie Viola is the parent representative for the Great West Region on the National Juvenile Arthritis Alliance Leadership Group. Find out how she plans to make a difference for families.

  

Viola familyAll of us have our own story to tell.  Our stories reflect each unique experience we acquire as we journey through life.  Blissful experiences are cherished and remembered through our pictures, journals, and priceless keepsakes.  We treasure these favorite family memories and cling to them, hoping they last through the hardships that are bound to come.
 
I have had many wonderful times on my journey through life, and I clung to them when a large detour took place several years ago. Like many JA parents, I was in complete shock when my little 2 year old was diagnosed with Polyarticular JIA.  I felt helpless, alone, and terrified of what the future held.  But, I stepped with one foot in front of the other. Step by step we made it through extensive testing, steroids, several joint injections, and weekly shots.
 
The first goal was to get my little girl out of pain.  After nine long hard months, she was finally pain free.  Even though her JA journey did not end there, she was finally able to walk without pain.  
 
As we conquered our first JA goal, I reached out to the Arthritis Foundation.  I was excited to hear that the Arthritis Foundation funds research to find a cure for my little girl and the other 300,000 kids with JA.  I knew I needed to be a part of it, and I wanted to help in any way possible. 
 
JA is now a part of my life story.  My daughter is on a JA journey, and I am holding her hand and walking through it with her.  In fact, our whole family is.  We are here to support her, fundraise for a cure, and be there to hold her tight.
 
My name is Annie Viola, and I am a JA mom.  I have been on this journey for over three years now, and I still have so much to learn.  I am accompanied on this journey with my husband of 11 years and four wonderful children.  We live in Salt Lake City, Utah.
 
I am passionate about building relationships and connecting JA families.  We need each other to lean on and help support during the hard times.  I serve as the regional JAALG representative.  Juvenile Arthritis Alliance Leadership Group is another valuable tool the Arthritis Foundation has provided to understand and hear what is on the hearts and minds of JA families.  I am honored to represent all the Great West Region JA families. 
 
My goal for JAALG is to be the voice for the JA parents who are walking through this tough journey and holding onto their little one’s hand (or even carrying them at times).  I want to be the advocate for all the moms and dads that have been where I have been, and are going through the same struggles.  I want to share your stories, your experiences, and your needs because we are all on the same journey – a JA journey.
 
Partnering with the Arthritis Foundation, we can build a better future for our JA kids.  Please share with me your stories, and your ideas of how I can serve you and your family.  Feel free to contact me at GreatWestJARep@gmail.com.
 
Journeying with you,
Annie Viola 

 

  

 


  

Boost Your Skills as an Arthritis Advocate

View these handy tip sheets to learn how to be a better teen, parent or state advocate. 

 

 fundraising tip sheet

 leadership tipsParents 

TipsState 

Advocacy TipsTeen Tips

 

ambassador tips 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 


 

Happy Campers in the Great West

Hundreds of campers and families enjoyed JA Camp activities this summer.

  

campers at lakeThere’s something about summer camp that brings a smile to even the surliest teen’s face. The enticing smell of campfire, the joyous sound of new friends laughing and playing, and the gorgeous summer sunshine allow kids to let their guard down and truly have fun.

This magical summer camp setting is an ideal location for the Arthritis Foundation to connect kids affected by juvenile arthritis (JA) and other rheumatic diseases with other kids who face the same challenges.

A knowing look from another kid who understands that arthritis isn’t “just for old people” can go a long way in helping a child with arthritis feel accepted, less different and happy. A mention of joint injections, infusions, morning stiffness or pain doesn’t attract questioning looks or raised eyebrows… it solidifies the bond between campers. A Camp JAM camper remarked, “my favorite memory at camp this year was meeting new people with my situation.”

Meeting others at camp who have shared the same experiences helps build community and provide emotional relief. Kids learn that they are not alone in coping with JA. The Arthritis Foundation, Great West Region is proud to play a part in creating smiles and facilitating supportive connections among families by offering six summer camps for kids with arthritis (and in some cases, for the whole family).

“The Arthritis Foundation’s JA Camps provide education, networking and fun for kids and teens with arthritis and other rheumatic diseases. They build lasting connections among families,” said Cindy Bishop, Arthritis Foundation Program Coordinator and Director of Camp JAM in Oregon. “Kids and their families leave camp on the final day feeling inspired and motivated to make a difference for others living with arthritis.”

But don’t just take our word for it. See what other parents and kids have to say about our JA camps…

family"This year, as it was last year, camp continues to be a magical place for my family and me. It brings connections that we wouldn't otherwise make, it brings solace in that we no longer feel alone and it brings information and resources to help us plan and make better future decisions. But more than all that, it is a safe place where we are able to be free. All our thoughts, concerns and raw emotions are allowed, accepted and most importantly, understood. Camp is the one place where we are most allowed to be exactly as we are and we are still loved and accepted. [Camp] has given her a time to be free, not to worry about being different. Here she is just a kid."

dinosaur face paint"She has had such a good time, and it has built her self-esteem."

"My child feels accepted and "normal" at camp."

"This camp was very awesome! Made me feel like a “normal” family for the first time since the diagnoses."

"Camp has become the “highlight” of the year for [my daughter]. She loves the friendships she has developed with the other kids with arthritis."

pie and cheese puffsMy favorite camp activity was…
“hanging with the Counselors”
“teambuilding/bonding”
"Campfire!"
"Crafts!"

My favorite memory at camp this year was…
“Seeing friends from past years”

Each year, JA camps are offered to families for a nominal fee, with generous scholarships available for all camps. The Arthritis Foundation is able to underwrite part of the expense of JA Camps through support from community, family and corporate foundations, companies committed to the cause, and generous individual donors. The remaining costs are covered by fundraising efforts held throughout the year.

Please consider making a difference in a child’s life by donating to support JA camps and join us in fundraising through local events, such as the upcoming Jingle Bell Run/Walk nearest you!

 

 


 

Tales from the JA Conference

The 2014 Juvenile Arthritis Conference was a success. Find out through these photo stories some of the ways it helped families.  

 

 emery

 

ja conference montage

JA photo booth

 

ja conference posts

You can view even more perspectives from the JA Conference at:
www.facebook.com/JuvenileArthritisConference


 

Announcing the Juvenile Arthritis Power Packs

Sign-up for your free JA Power Pack and get connected to some helpful, cool resources for kids with JA.

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!

Your FREE JA Power Pack includes:

Raising a Child with Arthritis: A Parent's Guide
Explains the various types of juvenile arthritis, as well as treatment options and medications available

Arthritis in Children
Provides general disease information and addresses child-specific issues such as after school activities, school attendance and laws that may be helpful to kids with arthritis

Buddy D. Bear
A therapeutic fuzzy friend to comfort and provide hot or cold treatment to soothe those aching joints

and much more!

girl with Power 

Pack

Register for your FREE JA Power Pack today or forward this email to a friend / family member with juvenile arthritis.

Please note:  This is a pilot program for families living in Alaska, Northern California, Colorado, Idaho, Montana, Oregon, Utah, Washington, and Wyoming.  Only one Power Pack per child with arthritis.

 

 

 

 

 


 

JA Conference 30th Anniversary: Milestones and Memories Video

View this powerful retrospective of the history of juvenile arthritis over the past decades.

 

 ja milestones screenshot

 

 

JA Teen Retreat in California

Learn more about this great event for teens with JA. 

teens

The JA Teen Retreat provides teens, ages 14-18 and in high school, an opportunity to learn more about their disease at a time when independence, self-reliance and peer pressure become significant parts of life. This program will help teens increase valuable life skills and techniques for self- management of arthritis.

October 17 -19, 2014
Nature Bridge at Golden Gate Recreation Area
Sausalito, CA 94965

Learn more about this great event for teens with JA.

 


  

AmazonSmile

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

 

 amazon smile

  

 

 

 


 

 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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