Our Medical Advisory Board is
put together by:
Thomas J.A. Lehman, M.D.
Chief, Pediatric Rheumatologist
New York, NY
Ronald Laxer, M.D.
Chief, Pediatric Rheumatologist
Balu Athreya, M.D.
duPont Hospital for Children
Vanessa Malcarne, Ph.D
Professor, Department of Psychology
San Diego, CA
Kim Striegel, RN, FNP
Pediatric Rheumatology Nurse Practioner
New York, NY
James Seibold, M.D.
Professor of Internal Medicine and Director of the
University of Michigan Scleroderma Program
Ann Arbor, MI
Francesco Zulian, M.D.
Chief, Pediatric Rheumatology Unit
Terry Moore, M.D.
St. Louis, MO
Julie James, CNC
East Village Wellness
Long Beach, CA
Juvenile Scleroderma Network
It is hard enough to face the effects of juvenile scleroderma, but facing them alone can be devastating. We invite families nationwide to become involved and help provide support and friendship to children who have juvenile scleroderma.
What is the Juvenile Scleroderma Network?
We are a unique non-profit membership organization with IRS 501(C)(3) status, that is put together by board members, made up of volunteer parents, health professionals, and people interested in juvenile scleroderma.
Founded in 1999, the Juvenile Scleroderma Network is the only national voluntary organization that works for all children affected by juvenile scleroderma and their families. Volunteers nationwide help to support community education programs and fund raising activities. The Juvenile Scleroderma Network relies on public contributions to provide juvenile scleroderma programs. The JSDN is not affiliated or receives funds from any scleroderma or related diseases organization.
Children who have juvenile scleroderma may experience confusion about their illness, anger about change in appearance and fear of the unknown. For children to deal successfully with the impact of juvenile scleroderma, it is most important for them to have a supportive and understanding familial unit. For parents to be able to help their children deal successfully with juvenile scleroderma, it is important for them to have a support network to exchange information and find emotional reassurance.
The Juvenile Scleroderma Network is working to:
To enhance the public's awareness of Juvenile Scleroderma and related diseases.
Provide educational programs about juvenile scleroderma to help children and their families gain a better understanding of juvenile scleroderma.
Provide comfort and reassurance to families affected by juvenile scleroderma.
To support pediatric research when available to designed to identify the cause and cure of Juvenile Scleroderma.
Connect children afflicted with juvenile scleroderma with each other to help them feel less isolated and less frightened.
Connect families who share the same life situation and help them find new strengths to live better with the impact of juvenile scleroderma.
Getting To Know The Medical Advisory Board:
The JSDN has a very impressive group of Pediatric Rheumatologist and other healthcare professionals who have volunteered to be part of a formal Medical Advisory Board. They all work long hours and are dedicated to making the lives of our children better.
Juvenile Scleroderma Network Programs and Services:
- 24-hour Support Line 800#
- Online Support
- For Kids' Sake Newsletter published by the JSDN
- Family Support Group Meetings
- Fundays and Fund-raisers
- Internet Friends
- Family Outreach Program
- Keypals for Kids and Teens
- Summer Camp Scholarships
- Pediatric Rheumatology Referrals
- Literature on Juvenile Scleroderma
- JSD Database
- National Juvenile Scleroderma Awareness Week (May 1 - 7)
- Ask the Doctor: Q&A
We must remind you that the Juvenile Scleroderma Network in no way endorses any drugs or treatment that we report to you. It is our wish only to keep you informed. We ask you to check any treatment with your child's physician.
It takes a nation to bring an organization together... Together, let's keep the milestones growing until there is a cure!
For more information on Juvenile Scleroderma, contact:
Juvenile Scleroderma Network, Inc.
1204 W. 13th Street, San Pedro, CA 90731
Tel: (310)519-9511 (Pacific Time)
24 Hour Support Line: 1-866-338-5892 (toll-free)
Speak to another JSD parent for emotional and logistical support
provided by home-based JSD volunteers. For medical advice, please
contact your child's physician.
Non-Medical Questions or Comments? Click Here
Medical Questions? The Doctor's In: Q & A