Did you know that juvenile arthritis is very common?

Jul 01, 2014 at 09:50 am by bryan


The Bryant Family of Murfreesboro will be among children with arthritis, caregivers, doctors and researchers from across the nation who will convene in Keystone, Colo., for the Arthritis Foundation  National Juvenile Arthritis Conference, held July 3-6 in conjunction with Juvenile Arthritis Awareness Month.

Approximately 1,000 attendees will have the opportunity to network with those who share similar challenges and learn of the latest advances in juvenile arthritis research and care. Conference participants will also celebrate the significant advances in juvenile arthritis medication, awareness and treatments since the conference’s founding in Keystone in 1984. View a schedule of events.

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“The National Juvenile Arthritis Conference is a hallmark event of the Arthritis Foundation and a source of hope for caretakers and families coping with juvenile arthritis,” says Arthritis Foundation President and CEO, Ann M. Palmer.  “While great strides in the diagnosis and treatment of juvenile arthritis have been made over the last 30 years, the need to exchange ideas, network and learn about the latest treatments remain paramount. As the Arthritis Foundation marks the 30th anniversary of the National Juvenile Arthritis Conference, we reaffirm our commitment to meeting the evolving needs of families with juvenile arthritis and our commitment to fight relentlessly for a cure.”

Juvenile arthritis is one of the most common, chronic childhood diseases, yet it often goes undetected or is misdiagnosed when symptoms first appear. Approximately 300,000 children in the U.S. are living with this painful and debilitating disease, including Emma.

Emma is 13 years old and was diagnosed with arthritis in early 2012.  She has attended Camp AcheAway in Nashville for the last two years and has participated in the Franklin Jingle Bell Run/Walk receiving the 3rd Place Award for Top Individual Fundraiser last year.  Emma and Trish, her mother, are looking forward to meeting more families from across the country who struggle with the same challenges.  They are hoping to gain valuable knowledge about arthritis and related issues from the Arthritis Foundation while networking with other families just like them.  This will be the Bryant Family's first time attending the JA Conference and they are traveling on a paritial scholarship from the Arthritis Foundation.

“What I love best about the JA Conference is that it’s for the parents as much as the kids,” explains Meagan Fulmer, Chief Development Officer.   “While the kids and teens are having fun with their friends and learning about JA and how it affects them and their parents are in workshops learning about JA, treatments, research and issues that affect their kids suffering with a chronic illness. The whole family makes lifelong connections!”

In a continued effort to reduce the heavy burden of juvenile arthritis, disability and cost of this chronic disease, the Arthritis Foundation offers support for families here in Middle Tennessee including:

  • Local Juvenile Arthritis (JA) Camps – During the week of July 13-19, children in with juvenile arthritis in Tennessee, ages 7 to 15, will experience a week of fun and friendship at Camp AcheAway outside Nashville, TN.  Camp provides kids the opportunity to meet other kids that are having similar experiences dealing with juvenile arthritis while just being a “kid”.  Activities are designed to help campers build confidence, make lifetime memories and create lasting friendships.  Camp is provided at no cost to families through the generous support of donors.  Sponsorships are available and always needed.
  • Juvenile Arthritis Family Education Days – Several JA Family Education Days are held throughout the year in Tennessee.  The one day events are held in Johnson City, Nashville, Knoxville, Jackson, Memphis and Chattanooga for local families to come together to network, learn and support each other.  Presentations about JA from local physicians and other health professionals are provided for the parents while staff and volunteers lead educational and fun activities for the kids.  All family members are welcome, siblings included because juvenile arthritis affects the entire family.
  • The Power Pack – Newly diagnosed families are sent a backpack full of information and resources from the Arthritis Foundation at their request.  The Power Pack is provided at no cost to the family and contains a book, “Raising a Child With Arthritis”, therapeutic teddy bear, resource lists and more for the family.  The Arthritis Foundation wants each family to know they are not alone; the Foundation is here to support them in their journey.
  • Juvenile Arthritis Advocacy – Eleven states do not have a single specialist to treat children with juvenile arthritis.  Arthritis advocates speak out for federal support to train more pediatric rheumatologists and for more research funding to help children with all forms of juvenile arthritis.

More information:

To learn more about juvenile arthritis and resources for families, visit www.kgat.org. The National Juvenile Arthritis Conference is supported by national sponsors Amgen, AbbVie, Genentech, and Novartis, and local sponsors Anschutz Foundation, Assistance Fund, Wilson Sonsini Goodrich & Rosati Foundation, Triple Bypass/Team Evergreen Cycling and Questcor.

 

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