Juvenile Arthritis (JA) refers to any form of arthritis or an arthritis-related condition that develops in children or teenagers who are less than 18 years of age.
Impact of Juvenile Arthritis:
• Approximately 294,000 children under the age 18 are affected by pediatric arthritis and rheumatologic conditions.
• Ambulatory care visits for pediatric arthritis and rheumatologic conditions averaged 827,000 annually.
• Juvenile arthritis is one of the most common childhood diseases in the United States.
• Arthritis and related conditions, such as juvenile arthritis, cost the U.S. economy nearly $128 billion per year in medical care and indirect expenses, including lost wages and productivity.
• In Florida there are approximately 16,000 children with arthritis.
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NEW Juvenile Arthritis Website Launched
The Juvenile Arthritis Alliance has unveiled a new website for kids, tweens, and teens living with juvenile arthritis. Check it out here!
Get Connected on Facebook
“Like” our Arthritis Foundation Florida chapter Facebook Page
Connect with JA Families - Join our Patent Networking Group Facebook Group “JA Families – Arthritis Foundation Florida” to connect with parents dealing with juvenile arthritis. Download our “Arthritis is Unacceptable” flyer to share with others and find out more about what we are doing in Florida to make arthritis unacceptable.
2013 Juvenile Arthritis Conference
Dream Believe Achieve
Anaheim California, July 18-21, 2013
Florida Chapter Scholarships
The Juvenile Arthritis Conference is the Arthritis Foundation's signature, nationwide event for families affected by juvenile arthritis. This year’s theme is Dream, Believe, Achieve. The three-day education event focuses on health, wellness and fun for children affected by arthritis, lupus, myositis, ankylosing spondylitis and other rheumatic diseases. Specific educational tracks focus on issues relating to parents, teens/young adults, children affected by arthritis and their siblings. Visit the conference webpage at http://www.arthritis.org/resources/community-programs/juvenile-arthritis-national-conference/ to learn about all the exciting events planned as well as registration and hotel details for this year's conference. And follow all the details on the Juvenile Arthritis Conference Facebook Group Page https://www.facebook.com/JuvenileArthritisConference?group_id=0
This Juvenile Arthritis Conference offers a chance to meet other families going through similar challenges, share stories, learn new techniques for managing juvenile arthritis and have fun!
"There are no words to describe how it feels to be surrounded by 1,000 people who understand" – Heidi, JA Mom
The Arthritis Foundation Florida Chapter each year offers a limited number of scholarships to the JA Conference. Scholarship applications and information can be downloaded here.
Consideration will be given to applications submitted before June 8th. For more information please contact Susan Cuellar at 800-850-9455 x11; scuellar@arthritis.org.
Check out photos from the 2012 JA Conference on the JA Families - Arthritis Foundation Florida Facebook Group page. And The Florida Chapter was pleased to offer conference scholarships to 19 families.
CAMPS for Kids with Arthritis
Family Retreat Weekend at Camp Boggy Creek
April 5-7, 2013 and September 27-29, 2013
For ages 7-16 (child with arthritis) and their families
For more information and application http://www.boggycreek.org
or call 866-Go-Boggy (462-6449)
Applications for JA Family Retreat are now on the Boggy website
Camp FunRise, Miami
In partnership with Miami Children’s Hospital
June 23-29, 2013
For ages 8-12
Download application here
Camp Boggy Creek, Eustis (NW of Orlando)
Member of The Association of Hole In The Wall Camps
June 18 – 22, 2013 and July 6-11, 2013
TBA For ages 7-16
For more information and application http://www.boggycreek.org
or call 866-Go-Boggy (462-6449)
Click here for helpful information on Boggy On-line Application
Miracle Camp, Pensacola
In partnership with Sacred Heart Hospital
June 13-15, 2013
For ages 8 - 16
Download the application here
Download parent letter here
For many young people, summer camp changes their life, not just for a week, but for a lifetime. The Arthritis Foundation Florida Chapter gives children with arthritis the opportunity to make those lifetime memories.
The week long juvenile arthritis camp focuses on what campers can do, not what they can’t do. Campers are able to learn from others who have similar conditions and experiences. The program is designed to increase campers self-esteem by creating opportunities for them to meet personal challenges
For more information about Summer Camp for kids with Juvenile Arthritis, please contact the Arthritis Foundation, Florida Chapter at 1-800-850-9455 and ask for Susan Cuellar, Vice President of Mission Delivery.
Osceola County School Nurses Learn about JIA – Dec. 7, 2011
Norma Liburd, RN-BC, MN, Clinical Nurse Specialist of All Children's Pediatric Rheumatology gave a wonderful presentation to the very dedicated school nurses of Osceola County. Some of the opics discussed were diagnostic criteria and subtypes of JIA and characteristics of each; school related problems that students with JIA have and intervention strategies; and resources available through the Arthritis Foundation. We appreciate Norma's time and expertise in raising awareness and education of JIA. Click here to view Norma's PowerPoint presentation Part 1. and part 2
JA Family Connect Day – Tampa, Oct 29, 2011 – A Fun Success
A special thanks Hillsborough High School student, Logan Lentini, who volunteered with the Arthritis Foundation, Florida Chapter to host the JA Family Connect Day held on October, 29th. See Flyer Logan wanted to do something for his brother and other kids with arthritis. He understands how alone sometimes they feel because so few understand what it like to be a kid with arthritis. Going to the National JA Conference with his family last summer cemented his idea that he wanted to volunteer more and make a difference. As part of his IB program at school, Logan developed his idea, survey parents for topics, planned the agendas for the parents and kids activities, recruited volunteers and speaker, solicited the donations and managed the logistics. His hard work and dedication was reward with a very successful fun event. Pictures from the event our posted on our Facebook page http://www.facebook.com/AFFlorida
Speakers included:
Melissa Hughey: Arthritis Foundation Fundraising
Information about Arthritis Foundation Events and Fundraising can be found here
Samantha Head, America's National Teenager 2012: Living with JA
A video of Miss Head’s presentation is on her Facebook page - America's National Teenager 2012 Samantha Head
Dr. Renee Modica, UF Shands & Dr. Robert Nickeson, All Children’s: Medications and Research
Click here for Dr Modica’s PowerPoint presentation
Dr. Lise Fox, University of South Florida: Helping Children Cope
Director of Florida Center for Inclusive Communities and Professor at University of South Florida, Department of Child and Family Studies, College of Behavioral and Community Sciences
Click here for Dr Fox’s PowerPoint presentation
websites for resources and information, www.challengingbehavior.org and www.flcic.org
Selina O’Shannon, Disability Rights Florida: 504s/IEPs
Senior Advocate-Investigator, Education Team
Formerly the Advocacy Center for Persons with Disabilities, Inc.
Click here for Ms. O’Shannon’s PowerPoint presentation
www.DisabilityRightsFlorida.org
Kids’ Activities included:
Igi - The Therapy Bear donated by Baxter BioPharm
Ima JA Sib Bear, bears donated by AOPII and book written by Logan Lentini
Balloons and Magic by Mike Jones the Magic Man
Crowns with Samantha Head, America's National Teenager 2012
Tucker Turtle, developed and written by Rochelle and Parker Lentini
And chants, problem solving games and crafts with our wonderful volunteers
Click here to enlarge!
For more information on Florida Chapter programs for kids with arthritis and their families, please call 800-850-9455 or email scuellar@arthritis.org
FLORIDA KIDS WITH ARTHRITIS GET GOVERNOR'S ATTENTION
Kids and Young Adults, 2 to 21 years old, staged a "peacful protest to fight arthritis" in Tallahassee on April 13, 2010 as part of Children's Week at the Capitol. With their families, the Arthritis Foundation, Florida Chapter and supporters, they took their message to Governor Crist and state legislative leaders. Dressed in tie-dye, carrying protest signs and passing out flowers, they want people to know that kids get arthritis and they are fighting not only daily pain and joint stiffness but for a cure and better access to healthcare.
To kick off their day of protest, these young people met with Florida State Representatives Ed Homan and Kelly Skidmore to discuss health care issues and how to be a successful advocate. Pam Haas of Orlando and her two children talked about what it is like for 15 year old Rachel to live with juvenile arthritis. Also present were Representatives Pafford, Murzin, Heller and Krisman. Current advocacy priorities discussed include lack of specialty care for juvenile arthritis. A 75% increase is needed from the 250 pediatric rheumatologists nationwide to meet the needs of the more than 300,000 children current diagnosed with a form of arthritis.
At the Capitol's Courtyard the kids and their families set up their booth, educating kids and adults alike on their issues and the facts about arthritis. They also visited their district offices to tell their stories of arthritis in kids in person. The highlight of the day was meeting Governor Crist on the courtyard and involving him in their peaceful protest against arthritis.
To learn more about arthritis in children and the Arthritis Foundation Advocacy program, please call 800-850-9455 or visit www.arthritis.org
