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AFamilies
News for kids and young adults affected by juvenile arthritis and their families 
Winter 2015

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Articles This Issue

A Legacy of Helping Children Gain Control of Arthritis
Colorado’s JA Camp begins a new era as its founding leaders retire. Learn about their legacy.

Form a JA Family Team Today at the Walk to Cure Arthritis
Learn how your participation can earn you free registration and lodging at the 2016 JA Conference. Get the details.

Meet Walk to Cure Arthritis Honoree Ellie Kunze
Youth honorees lead the charge at Walk to Cure Arthritis events.  Be inspired by Ellie.

Learn More About JA Family Days
Have you heard about “JA Family Day” and are you wondering what to expect?  Read the FAQ.

Confused about Medication Cost?  Guidance Now Available
Learn more about important access-to-care resources. 

Come Together this Summer to Meet, Learn and Play
Two national conferences provide opportunities to connect with others with arthritis. Discover more.

Photo Postcard

Community Connections

Connect with Us

 

 

 


 

A Legacy of Helping Children Gain Control of Arthritis

Colorado’s JA Camp begins a new era as its founding leaders retire.



Roger and Joan

For over 30 years, hundreds of children affected by arthritis have spent a week of their summer at Juvenile Arthritis (JA) Camp in the Rocky Mountains learning about their arthritis. They’ve met other campers with similar challenges, taken part in camp activities adapted to everyone’s abilities, and very often made friendships that last a lifetime.

As Dr. Roger Hollister prepares to retire from his pediatric rheumatology practice and from leading the camp he founded with his wife Joan (pictured together left) in 1984, he shared memories of camper experiences, barbecues, crafts, and the occasional bear sighting.

Dr. Hollister has been practicing pediatric rheumatology since 1974, the last 38 years at the Children’s Hospital Colorado. In that time he has provided specialty pediatric rheumatology care to thousands of families across and beyond Colorado, Montana, Wyoming, South Dakota, and New Mexico. He’s built an adoring patient and fan base over his decades of medical care, published dozens of research articles, educated countless new physicians entering the field and has been deemed a Master of the American College of Rheumatology, one of the field’s highest honors.

Thirty years ago, Dr. Hollister and his wife Joan launched JA Camp, a six-day camp program for children with arthritis. JA Camp takes place at the YMCA of the Rockies, a recreational summer camp facility nestled next to Colorado’s Rocky Mountain National Park. 

“We thought it would be valuable to gather children with arthritis from across the region to meet others with arthritis," Dr. Hollister explained.  "We hoped that it could reduce the feelings of being alone and the isolation that most children with arthritis feel because of the rarity of their disease.”

JA Camp has grown and flourished over the years, from a three day camp that served 15 campers in its first year to a six day program that serves up to 45 campers annually. Children between the ages of 8 to 16 with arthritis, lupus, spondylitis and fibromyalgia are invited to attend camp. JA Camp’s staff members are all volunteers, many with a background in education or medicine.

Many of JA Camp’s activities are designed to incorporate the landscape, beauty and resources of Rocky Mountain National Park including boating, horseback riding and hiking.

camp quoteEducation about juvenile arthritis is an important element of JA Camp as well, and there are fun and unique educational games or discussions that take place each day. Dr. Hollister and his colleague Dr. Jenny Soep devote time to campers so that they get one-on-one answers to their questions or concerns about arthritis.

“Campers seem to really enjoy the camp program,” Dr. Hollister said. “There was one young man who said that he looked forward to JA Camp each year more than Christmas.”

“We have tracked results from camp that shows its impact,” Dr. Hollister shared. “A few years ago we conducted a survey with campers before camp, at the end of camp, and six months later to measure their self-esteem and locus of control. Locus of control refers to the extent to which individuals believe they can control events affecting them. If you have an internal locus of control you feel like you are the captain of your own ship. If your locus of control is external you attribute successes or failures to outside influences.”

He continued, “The results showed that campers’ self-esteem had increased and that their locus of control often shifted from external to internal.” 

“We also see changes in patients’ compliance with taking their medications after camp. It can make a positive difference if campers see that their roommate is taking the same medications,” Dr. Hollister added.

Dr. HollisterDr. Hollister announced his retirement from practicing pediatric rheumatology this past summer. He saw his last patients in November of 2014, but is still teaching at the University of Colorado Hospital/Children’s Hospital Colorado until July 1, 2015. Two new pediatric rheumatologists will take his place later this summer.

His retirement marks an appropriate time to step back from leadership of JA Camp as well. “It was time to turn the program over to other people,” said Dr. Hollister. “My wife, Joan, and I started the camp 30 years ago and we felt it best for younger people to take over.”

Dr. Soep will be the new medical director at JA Camp. The Arthritis Foundation, alongside a core group of volunteer leaders, will provide camp planning, scheduling and promotion and the Foundation will administer camper and staff recruitment, registration and management.

“The Arthritis Foundation has been fantastic in supporting camp,” said Dr. Hollister. “If families couldn’t afford to attend camp the Arthritis Foundation provided them with scholarships.”

As for the future, Dr. Hollister firmly believes that JA Camp will continue for many years to come. “Ten years from now or beyond, I hope that Camp still exists and that it is still as helpful to families. That would be an appropriate legacy.”

 

 

 

 


 

Form a JA Family Team Today at the Walk to Cure Arthritis 

Learn how your participation can earn you free registration and lodging at the 2016 JA Conference.

 

walk to cure arthritisThe Walk to Cure Arthritis is a fun and easy way to help raise funds and awareness to fight the nation’s leading cause of disability.

All JA family teams who raise at least $5,000 for the Walk to Cure Arthritis, Jingle Bell Run/Walk or an Arthritis Bike Classic event in 2015 will earn FREE registration for their entire family at the 2016 JA Conference (a $250 - 350 value)!  Raise at least $10,000 for one of the events and you will also earn two nights’ free lodging in the conference hotel (minimum $650 value)!

To qualify for these incentive awards, be sure to register as a JA family team online through your local site. To help your family register follow these instructions.

1. Go to www.WalkToCureArthritis.org, click on your state, and select the event where you would like to participate.

2. Click on the REGISTER button and agree to the waiver.

3. Select Start a Team, then New Team Under Group, and click on JA Families from the drop down menu:
 
sign-up

4. Complete the rest of the registration form with your team name and fundraising goal!

5. Start inviting friends to this FREE event and raise money for a cure!



Find Your Local Walk to Cure Arthritis

Livermore, CA
May 16, 2015
www.TriValleyArthritisWalk.org

San Francisco, CA
May 30, 2015
www.SFWalktoCureArthritis.org

Denver, CO
May 17, 2015
www.DenverArthritisWalk.org

Bellevue, WA
May 16, 2015
www.BellevueArthritisWalk.org

Vancouver, WA
May 16, 2015
www.VancouverWalktoCureArthritis.org

Medford, OR
October 3, 2015
http://www.arthritis.org/oregon/events-in-your-area/walk-to-cure-arthritis.php








 

Meet Walk to Cure Arthritis Honoree Ellie Kunze

Youth honorees lead the charge at Walk to Cure Arthritis events.

KunzeYouth honorees serve as the face of a fundraising event—sharing their arthritis story with the public, inspiring friends with their perseverance, motivating other JA families to form teams, and asking everyone to become involved in the fight against arthritis by raising funds for a cure. Families tell us that participating in their local Walk to Cure Arthritis event empowers them to make a difference in their child’s life by actively FUNDING a cure for arthritis.

This year, Team Ellie in Vancouver, Washington is stepping out in honor of Ellie Kunze (right), the 2014 Vancouver Walk to Cure Arthritis Youth Honoree.

Manda, Ellie's mother, writes about their journey battling arthritis:

My daughter, Gabriella “Ellie” Grace Kunze was 18 months old when she was first diagnosed with polyarticular juvenile idiopathic arthritis (JIA). As her mother, people ask me all of the time, “How did you know when she was only 18 months old?” The truth is that it took me a while.

For many days I thought I noticed her limping in the mornings, but by afternoon, she was fine. One day I lifted her out of her crib and set her down on the floor. She went from a standing position to her knees buckling out from under her and she could not get back up. She just cried and cried.
 
I took her to the doctor and they referred me to a pediatric rheumatologist, who suspected it was JIA. After having consistent symptoms for six weeks, he confirmed that it was, in fact, JIA.
 
Our first attempt at curbing the symptoms was through corticosteroid joint injections. She had them in her fingers, wrists, toes, ankles, elbows and knees. The doctor told us that best case scenario, the symptoms will not return, and in the worst case scenario, the effects of the injections will last about six weeks. Ellie was the worst case and at approximately six weeks and one day, every joint was inflamed just as bad as it was prior to the injections.
 
With the failure of the joint injections, we began a different medication, which was injected. There was very slight reduction in inflammation. At that point, we were faced with the tough decision to put her on biologic medication. Ellie began injections of a biologic medication coupled with her other injections and the results were nearly miraculous! Within weeks, she was “normal” again. All of the visual swelling was gone, and her joints moved and bent like they were designed to move.
 
After two years with no flare-ups, we assumed she was in remission on medication, and attempted to wean her off of the biologic medication. Six weeks later, without injections, her knee swelled up to the size of a softball, one of her elbows completely locked up at a ninety-degree angle, and worst of all, her temporomandibular joint (TMJ) locked up and she could not open her mouth more than four millimeters. To try to correct the horrible side effects of NOT being on the medication, we had to put her back on her biologic medication, plus six months of a steroid before things got back on track.

After half a year everything was back to normal except for the TMJ. She has about six millimeters of movement in her jaw now, but has regular pain. She has had to have three joint injections in that one site and because of the inflammation, there is slight growth stunting on the left side of her jaw. Ellie still gets two shots every Sunday night and a joint injection in her jaw about every six to nine months. Other than that, she is a happy, healthy girl!
 
Ellie has had a team at the Vancouver Walk to Cure Arthritis for four years in a row and has attended Camp JAM (a camp for kids with arthritis) for five years in a row. What makes Ellie stand out as an ambassador for arthritis is that she perfectly blends in with her peers. She knows her limits and is not afraid to say when something hurts or that she needs a break, but she does not treat her disease as a handicap. To her, arthritis is just a regular part of her life. She tells people she has arthritis on a "need to know" basis, but she doesn't use it as a crutch. She is the middle child of five, with two sisters and two brothers. She is very independent with a laid back, go with the flow attitude. She does her chores and is very organized when she puts her mind to it. She just celebrated her ninth birthday in August and is starting the fourth grade. She is a Girl Scout, loves to swim, ran track last year, and loves to sing. Her favorite trait is her sense of fashion - she loves to be glitz and glam all the way!
 
Our family is committed to supporting the Arthritis Foundation's efforts to bring awareness about arthritis to the public and participate in fundraising activities to help find a cure for this debilitating disease. Team Ellie is ready and excited to be at the Walk to Cure Arthritis for our fifth year, and we hope that you will come walk with us!







Confused about Medication Cost? Guidance Now Available

Learn more about important access-to-care resources. 



pillsNow available online are three new Arthritis Foundation guides. http://www.arthritistoday.org/arthritis-treatment/getting-medical-care/paying-for-care/

The guides list pharmaceutical company programs that help lower the cost of medication; ways to get help paying for Medicare and prescriptions; and financial aid organizations that help pay for medications. The drug-specific resource list is unique, because it focuses exclusively on arthritis medications.

“When it comes to treating arthritis, out-of-pocket costs can put medications out of reach for some patients,” says Arthritis Foundation President and CEO Ann Palmer. “We have become increasingly concerned about changes in the health care environment that restrict the coverage of arthritis medications, causing people with arthritis to often pay full price, or a large portion of it, for the medication they need. This can cause some families to make very tough decisions.”

The new resources available:

Pharmaceutical Company Programs That Help Lower the Cost of Medication
The Arthritis Foundation guide to prescription co-pay support and financial assistance for specific arthritis drugs.

Get Help Paying for Medicare and Prescriptions
The Arthritis Foundation guide to private and government programs that help with the cost of Medicare Part D coverage and Medicare prescriptions.

Financial Aid Organizations That Help Pay for Your Medications
The Arthritis Foundation guide to private groups that give financial assistance for arthritis and other medications.

 

 

 

 

 


 

Learn More About JA Family Day

Have you heard about “JA Family Day” and are you wondering what to expect? 

 

What is it?
dadandsonJA Family Days are fun-filled events for children and teens with rheumatic conditions and their families. Join us to learn about arthritis, meet families who have similar concerns, and enjoy a day of fun activities!

Who plans it?
Arthritis Foundation staff collaborate with volunteers and local health care professionals to plan a fun and educational event for your family. We review evaluations from previous events to help us plan an outstanding program that meets your needs and provides a great experience for your whole family!

Who can attend?
In order to serve as many JA families as possible, attendance is reserved especially for kids and teens with arthritis and their immediate family members, including siblings. Anyone under the age of 18 must be accompanied by an adult. In special circumstances, we can accommodate extended family members or significant others who directly care for your child with arthritis.

How do I register?
The JA Family Day registration process is quick and easy. Enter your contact information into our online registration form and answer a few simple questions about each family member. Your family will be registered in no time!

How much does it cost?
The cost to attend JA Family Day is $5 per person for early registration and may increase in price after the initial deadline. Payment can be submitted, safe and secure, through PayPal during the online registration process.

Are scholarships available?
We know that prescription medications, travel to multiple doctors’ offices and more JA-related expenses can all put a strain on your wallet. Scholarships are offered to anyone who needs them and the application (which contains one simple question) is built into the online form.

Can I sponsor a scholarship for another family?
Yes! During the registration process, you’ll be asked if you’d like to sponsor a scholarship. The Arthritis Foundation is able to offer scholarships to any family who requests one due to our very generous donors, like you!   The value of a JA Family Day scholarship for a family of four is approximately $250.  Sponsor a scholarship now!

What should I expect when I arrive?
We try to choose venues with free and ample parking. If there are any special directions or extra fees associated with attending JA Family Day, we’ll do our best to send out information beforehand to let you know. As you arrive, look for signs pointing you towards the Arthritis Foundation’s check-in table and you should soon find some warm, friendly faces of volunteers ready to greet you! You’ll receive an agenda for the day and any special information you need to know.

Will there be food?
Occasionally, we are able to offer snacks or a light meal at JA Family Day. We ask about dietary restrictions on the registration form and will try to accommodate your needs the very best that we can. You are always welcome to bring snacks for your family members. We know that full stomachs = happy kids! Please don’t bring food products with nuts due to allergies.

What types of activities/education take place?
Kids and teens will be assigned to a particular group and volunteer chaperones will lead them in their activities for the day. Activities vary each year by location. Your child may participate in age-appropriate “Talk With a Doc” sessions, arts and crafts activities, Minute to Win It challenges, scavenger hunts, or a unique activity based on the pizzapartyvenue. Our goal is to provide an opportunity for your kids to have fun with others—siblings and kids with arthritis—who understand what they’re going through, and to learn a little about arthritis along the way!

While the kids are off having fun together, parents and caregivers have a chance to learn from healthcare professionals and network with each other. Presenters cover popular topics such as coping with chronic disease, transitioning to adulthood and adult rheumatology care, nutrition, education, and pain management (to name a few!). Sometimes, parents/caregivers are divided into small groups and given a conversation prompt to allow them to dive into deeper conversations. Throughout the day, there are plenty of opportunities to ask any question, no matter how big or small. We want you to have time to connect with other parents/caregivers and gain new tools to help your family live well with arthritis!

How are kids assigned to groups?
Kids are divided into groups based on age/grade so they can get to know their peers. We try to accommodate requests for kids to be in the same group as their friends. Our number one priority is safety and appropriate child/adult ratios. Kids ages two and under will stay with parents. Special teen programming is offered for ages 13-17.

When and how many times per year is JA Family Day offered near me?
Each year, JA Family Days are offered at different times and locations, depending on a number of factors. We consider JA family interest, venue availability, local volunteer support, healthcare provider availability and staff travel funds. We work hard to offer at least one family program (family camp, family day or family gathering) in major metropolitan areas, once per year. Currently, we are proud to offer varying types of family programs near Seattle WA, Portland OR, Anchorage AK, Salt Lake City UT, Boise ID, Denver CO, and Missoula MT!

We send out email announcements to let you know that registration is open for a JA Family Day (and other events!) near you. Please subscribe to receive AFamilies publications and JA announcements from the Arthritis Foundation.

How can I get involved as a volunteer?
JA programs are not possible without the steadfast support provided by our awesome volunteers! Opportunities will be included in the email announcement and the registration process is quick and easy. Common positions include:

Chaperone - minimum age is 18 - assigned to one group of kids
Registration - no minimum age - help out at the registration table before and during the event
Assistant - no minimum age - help out as needed
Planning Committee Member - no minimum age - collaborate with staff members to plan the event

Upcoming JA Family Days- Register Today!

California JA Family Day – March 14 in San Leandro, CA

Idaho JA Family Day – April 17 in Boise, ID

Utah JA Family Day - October 10 in Salt Lake City, UT



We hope this helps answer your questions about JA Family Day. If you have any additional questions, please contact Andrea Aho at aaho@arthritis.org.

 

 


 

Come Together this Summer to Meet, Learn and Play

Two national conferences provide opportunities to connect with others with arthritis.  

 

 

JACNational Juvenile Arthritis Conference: Jet Set to Orlando!
July 23-26, 2015

The Arthritis Foundation’s National JA Conference is an unforgettable annual family event, where more than 1,000 kids, teens and young adults with arthritis, parents and siblings come together to meet, learn and play. This year, families from across the nation will gather in Orlando, Florida from July 23-26, 2015. Once there, they will  meet other families going through similar challenges, share stories, learn about the latest JA treatments and research, and learn strategies for managing daily activities and developmental and social issues.

Learn more and register here.





Arthritis Introspective Annual National Gathering Conference: Milwaukee in May!
May 22-24, 2015

AIA partner of the Arthritis Foundation, Arthritis Introspective (AI), serves young and middle-aged adults living with arthritis and rheumatic diseases through wellness education, empowerment and support groups.  AI’s annual conference called “The National Gathering” will take place in Milwaukee, Wisconsin from May 22-24 and you’re invited! The National Gathering offers health and wellness education sessions, motivational speakers, and social opportunities for young and middle-aged individuals
with arthritis and their loved ones. 

Learn more and register here.








 



 


 

Photo Postcard



Long




Young adult with JA, Alyssa Long, rubs George Washington’s nose for good luck! Long testified in front of the Washington State Senate Health Committee as part of her volunteer work as an advocate. Listen to Long’s testimony and sign up to be an advocate today. 

  

 

 

 

  

 


 

 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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