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Giselle Menezes, a Plano 4th grader, soared high on the obstacle course at the National Juvenile Arthritis Conference in Keystone, CO.

Celebrating More Than 30 Years of Medical Advancements, Fighting for a Cure

Juvenile Arthritis is one of the most common chronic illnesses affecting children, yet it often goes undetected or misdiagnosed when symptoms first appear. One North Texas family understands this firsthand and made the pilgrimage to be among other children with arthritis, caregivers, doctors and researchers from across the nation for the Arthritis Foundation’s National Juvenile Arthritis Conference held in Keystone, CO., July 3-6 in conjunction with Juvenile Arthritis Awareness Month. 

Plano 9-year-old Giselle Menezes, who was diagnosed with Juvenile Arthritis (JA) at 18 months, attended the conference along with her parents and more than 1,000 other families and children.. Participants had the opportunity to network with those who share similar challenges and learn about the latest advances in juvenile arthritis research and care.  Conference participants also celebrated the significant advances in juvenile arthritis medication, awareness and treatments since the conference’s founding in Keystone in 1984.

The nationwide conference is held annually for families, like the Menezes family, affected by Juvenile Arthritis and other rheumatic diseases.  Specific educational tracks focused on issues relating to parents, teens/young adults, children affected by arthritis and their siblings.  In addition, the conference offered families a chance to share and learn new techniques for managing juvenile arthritis and other rheumatic diseases. 

“The National JA Conference is a hallmark event of the Arthritis Foundation and a source of hope for families and caretakers coping with juvenile arthritis,” said Susan Carter, Chief Executive Officer, Arthritis Foundation South Central Region. “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 remains paramount. As the Arthritis Foundation marked the 30th anniversary of the National JA Conference, we reaffirmed our commitment to meeting the evolving needs of families with juvenile arthritis and our commitment to fight relentlessly for a cure.”

Arthritis is an umbrella term that refers to many autoimmune and inflammatory conditions that can develop in children ages 16 and younger. While there are many forms of juvenile arthritis, one common thread among them is that they can have a serious, even life-threatening impact on a young child.  It’s important for caregivers to know the signs and symptoms.

“When joint pain, swelling or stiffness occurs in one or more joints for at least six weeks, it may be an early signal of a serious, inflammatory rheumatic disease that requires immediate medical treatment to prevent permanent joint damage,” said Carter.  

Although Juvenile Arthritis is one of the most common, chronic childhood diseases, the symptoms are often overlooked or they miss early detection. Approximately 300,000 children in the U.S. are living with this painful and debilitating disease, including Giselle.  

“The JA conference allowed me, my husband and Giselle to get to know other families in our situation and bond with them,” said Shanthy Menezes, Giselle’s mother.  “These people have become such a great support group all year round.  We find it’s about making the personal connections, sharing our individual stories and getting to know each other.  It is also extremely helpful to get medical updates on JA from the doctors, as well as new medications that are in trial.  I think that is one of the most important aspects I take away from that weekend that I could not get on my own,” she added.

This year, in a continued effort to reduce the heavy burden of juvenile arthritis, disability and cost of this chronic disease, the Arthritis Foundation is offering support for North Texas families by hosting special JA Family Days every three months.

These local family-fun gatherings help parents network with others and give children an opportunity to join their friends for an entertaining outing.  The events allow children to put the challenges of living with arthritis on pause while they engaged in interactive activities allowing kids to just be kids.    

The Arthritis Foundation leads the way in helping people with arthritis live better today and create better tomorrows through new treatments, better access and, ultimately, cures. The organization also hosts additional opportunities for education, interaction and fun for JA families through a series of JA summer and fall camps throughout the South Central Region including Texas, Oklahoma and New Mexico.  The organization will hold its “Camp for All” at Camp KGAT, in Burton, TX Nov. 15-16.  Also, the Arthritis Foundation will host its JA Family Days on September 27-28.  For more  info visit www.arthritis.org/texas.

 

 “There has never been a more optimistic outlook for children with juvenile arthritis,” Carter said.   “Advances in research have produced new treatments that moderate the effects of juvenile arthritis.  Early diagnosis and a proper treatment plan can enable a child with the disease to live an active, full childhood.”

To learn more about juvenile arthritis and resources for families, visit www.kgat.org. The National JA Conference was 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.

About the Arthritis Foundation

The Arthritis Foundation (www.arthritis.org/texas) is the largest and most trusted nonprofit organization dedicated to addressing the needs and challenges of those living with arthritis, the nation’s leading cause of disability. Since 1948, the Foundation has remained committed to leading groundbreaking research for better treatments and a cure; fighting for patients’ access to affordable and effective health care; and providing trusted information and resources to the more than 50 million adults and 300,000 children living with the disease.

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