January 2014
SERVING JA FAMILIES AND SUPPORTERS   
April 2014

Nerd Herd 4 pictures  

What is your team name, and how did you come up with it? 

(Jacob) The name of my team is the Nerd Herd.  I thought it would be a catchy name, especially because I think I am kind of nerdy.

Jacob holding a mud pie.   

 

Why did you sign up for the Walk to Cure Arthritis?  

(Jacob) I signed up for the Walk because I was feeling a little sad after I was diagnosed in September of 2013 . I have not been able to play outside as much as I used to. I miss riding my bike, my scooter or my skateboard. This gave me something to be excited about.

  

Jacob getting blood drawn  

 

What are you looking forward to most at the Walk?

(Jacob)  I look forward to meeting other kids my age with arthritis.  I know it may sound crazy, but I really think that we can find a cure.  Greater things have happened. I wish I could win the lottery to find a group of researchers from all over the world and just find a way to get rid of this.  It's not fair that people, especially kids, have to live with this.  I want to be able to run, skate, ride my bike, play baseball and water polo again. 
Jacob wearing a football jersey.  

 

 

What are your top three tips for families to fundraise?  
(Jacob)  My mom has been helping me by using social media like Facebook, Twitter and Instagram.  I have been talking to friends and schoolmates about it. Last, we plan on going to all of our local fire stations and talking about arthritis, and how it has affected my family and me. Hopefully we will get some new team members and raise some funds.  

 

Jacob wearing a hat and smiling Name a great way to keep your child involved with fundraising.

(Mom) Jacob is very competitive, so that in itself has been his driving force.  He is always checking the site, always reminding me to post on Facebook, and looks forward to talking to all of his dad's workmates at the local fire stations.
  

Why is it important to participate in the Walk to Cure Arthritis?   

(Mom) It's important to raise funds first and foremost, but honestly, I look forward to meeting other parents and kids.  I have felt very much alone because not many people seem to understand what rheumatoid arthritis is.  

 

Why is it important to fundraise?  

(Mom) The only way that all of these great programs will continue is with fundraising... It's not just about the research aspect of it, but everything else - website, information, literature, support, camps, conventions, etc. None of this would exist without raising money!  

 

 

What do you say to potential donors to get them to donate/join your team? 
(Mom) Honestly, I have to brag a little bit right now.  Jake is a pretty awesome kid.  So many of our friends and family have been devastated by the news of Jacob's diagnosis. There has been little to no hesitation to help this kid out.  We have reached out to our Fire Community. Jacob's Dad has been with Cal Fire for over 20 years now, so reaching out to firefighters and their families has been nice. 
 
 
 
CofE

 

JULY

July 3-6

National Juvenile Arthritis Conference

Keystone, Colorado

 

OCTOBER

October 12

Young Adult Retreat

Wellness Reinvented -

Living Well with Arthritis

Burbank, CA

 

JUVENILE ARTHRITIS CAMPS

 

JUNE

June 3-8

Camp Cruz

Arizona

 

JULY

July 6-11

Joint Adventure Camp

San Diego

 

July 9-14

Camp Esperanza

The Painted Turtle

Lake Hughes,CA  

 

AUGUST

August 11-14

Camp Sol

 Nevada

 

August 29-31

 Camp Mana'olana

Hawaii

 

SEPTEMBER

September 12-14

Camp Esperanza

Teen Leadership

 Southern California

 

OCTOBER

October 24-26

Fall Family Camp

The Painted Turtle

 

October 17-19

Camp ILA

Arizona

 

WALK TO CURE ARTHRITIS

APRIL

April 26

Santa Barbara

ccarthritiswalk.org 

 

MAY

May 3

Phoenix

azarthritiswalk.org 

 

May 18

San Luis Obispo

sloarthritiswalk.org 

 

May 31

Los Angeles

 laarthritiswalk.org 

 

JUNE

June 1

Orange County & Inland Empire

Anaheim

ocarthritiswalk.org 

 

Sacramento

sacarthritiswalk.org 

 

Honolulu

 hiarthritiswalk.org  

 

June 7

San Diego

sdarthritiswalk.org 


JA Resources Blue

Websites

Kids Get Arthritis Too 

AF Pacific Region 

AF Youth Programs 

 

Social Media

JA Conference Facebook 

AF Pacific Region Facebook 

AF Pacific Region Twitter 

 

JA Program Contacts

Allie Avishai: Arizona and Nevada

aavishai@arthritis.org 

 

Jennifer Ziegler: California and Hawaii

jziegler@arthritis.org 


Editors

Alllie Avishai, Vickie Fung,

Teri Lim and Jennifer Ziegler

 

Design & Layout:

Nacor Villavicencio

2014 Arthritis Foundation,

Pacific Region. All rights reserved.

 

2014 JA Conference 

 

 


JA STORIES WANTED

Contact Allie Avishai or Jennifer Ziegler if you would like to share your story in 
'Child Spotlight' in a future issue of JA HEADLINES.
Highlights
Camp Pic April 2014
Walk To Cure Arthritis Logo
2014 JaConfAd
Make new friends and memories at
Find a WALK to CURE ARTHRITIS near you.
The "can't miss" event of the year for JA families.

Ask the Doc

Denise and Child
Denise A. McGinley
RN, MSNAd   
Director
Center for Orthopaedic Innovation
St. Luke's Medical Center, Phoenix

Please tell us about your background. Why you are so passionate about the Arthritis Foundation?

After a 30+ year career as a Trauma/Flight RN, I was forced "wheels down" by osteoarthritis.  Little did I know I would end up visioning the future of arthritis care as the Director of the Center for Orthopaedic Innovation at St. Luke's where my days are spent focusing on prevention, treatment and cure. But there is a lot more to my story and the passion I have for the Arthritis Foundation. I raised two boys with Ehlers Danlos Syndrome. At the time they were diagnosed, we were the thirteenth known family with the type of EDS they suffered. There was literally nobody to guide me through the many medical issues they encountered along the way - no one to be my advocate - no one to be a support system - and very few physicians with enough knowlege to manage their illness.  I have stood in the shoes of every parent of a child with JA and related disease, and have seen and heard the innermost fears and struggles of my own children. When I lost my boys eight years ago, I promised them that all that I had learned from their lives would be used to improve the lives of others. The Arthritis Foundation (AF) allows me to fufill that promise each and every day. 

 

Why is Camp so important?

Camp is one of the most important things we can offer our kids with JA. It is a struggle for them to be truly engaged with other kids because of their limitations. It's hard for other kids to realize that something as simple as staying up too late or being emotionally stressed before a test can result in so much physical suffering; it taxes friendships and pretty soon, our JA kids find their schoolmates jumping ship or distancing themselves. But the kids at JA camp are all in the same boat. Their lives are intertwined and their friendships are built on understanding. Instead of pulling away, they push closer, and when those dark times come (and they will), they stand along side each other.  As parents we want to believe that we can stand in the stead of friends, but our kids truly need each other to grow up healthy.

What would you say to a parent who is nervous about sending their child to camp?

As a parent of a kid with JA, you have probably struggled with the medical system for the simplest of things. You often feel that if you were not constantly pushing and fighting, their care would fall completely through the cracks. So it is natural to be nervous sending them to camp. You are 'frozen' when you are not able to watch over their care.  The Arthritis Foundation has ensured the best possible medical care for our JA kids. Most of the medical staff are are consistent year to year so we know both you and your kids.  There is a lot of communication - with our parents, our physicians and the folks at the AF - to ensure that they are safe and healthy.

 

What is the best way that parents can help get their kids ready for camp (medically speaking)?

The best way to medically prepare your kids for camp is to ensure that they understand, as much as is possible, what their routines are. Encourage them to check in with the medical staff when they don't feel right. Remind them how their flare-ups usually look when they start. If your camper is a teenager, remind them that camp is a much needed vacation from their every day stresses, but not a vacation from treatment. Remind them to keep to the plan. Most importantly, make sure you give us a good snapshot of these things so we are prepared to act on your behalf.  

 

What is your favorite Camp memory?

It is really  hard to pick a single camp memory because there are so many, but if I had to choose just one, I'd have to say it was this past year's 'senior graduation'. It was a 'rite of passage' when our older teens were recognized as 'graduated' from campers to future counselors. The sheer joy was breathtaking. Their smiles said, "I made it through because you have been my friends", and that gift is precious -to know that you are strong - to know that you are not alone - and to know that you have something to give back because of all you have been through together.