"Growing up with Lupus"

When: Sunday, June 4th, 2006
Where: Hofstra University, Hempstead, NY
Time: 9:30 AM – 3:45 PM

Come and Join us for a daylong seminar on Lupus and children. All parents of lupus children, and kids and teens with lupus are invited to attend.

Some sessions will be for parents only, and some for teens and kids only, others will be for both parents and kids to attend together. This format will allow children and parents to feel comfortable asking questions they might not want to ask in front of each other.

A light breakfast will be provided, and lunch is available on the premises but is not included in the registration price.

Registration is required through the Lupus Alliance office at 516-783-3370 or 1-800-850-9000.

Topics will Include:

SSI and Disability Information
504 and College Disability Scholarship Information
Raising a child with lupus
Coping Skills
Forging a relationship with your child’s doctor
Lupus and how it affects children

Thanks to many of our parents who took the time to fill out the questionnaires we recently sent out, the topics for this education seminar were chosen due to the comments and questions you sent back. We hope that this day will be informative and useful for both you the parents and the children.

"Growing up with Lupus" Educational Symposium for Kids with Lupus and Their Parents Schedule

9:00 AM
Registration & Light Breakfast

10:00 AM
Welcome
Carol Goldklang - President, Lupus Alliance of America LI/Q

10:15 AM
Morning Keynote Address

Children and Lupus
Dr. Beth Gottlieb, MD
Pediatric Rheumatologist, Schneider Children’s Hospital.

A talk about how lupus affects children. What symptoms are more common in children, dealing with your child’s doctor and how as a parent you can help the doctor manage your child’s lupus.

11:30 AM
Children and Teens Morning Session

A. Growing Up With Lupus
Jennifer Freemont
Christine Miserandino
Paula Goldstein, CSW

An open talk about what it is like growing up with lupus from two young women who were both diagnosed in their early teens. A question and answer session will follow with Paula Goldstein facilitating.

Adult Morning Session

A. SSI, and Children’s Disability Issues
John Antonowicz, Esq.,
Attorney with Fusco, Brandenstein and Rada

Have you ever felt like dealing with your child’s legal issues and paperwork is almost as bad as dealing with their disease? This discussion will help you learn what you need to know about SSI, Medicaid, IEP and 504 school plans and more.

12:30 PM
Lunch
On your own (the food court will be open)
_____________________________________________________
1:30 PM
Afternoon Keynote Address

Using Humor to cope with chronic disease for the whole family
Dr. Robert Phillips, PhD.
Founder and Director of the Center for Coping

Are you aware how humor can help you and your children cope with lupus, as well as other autoimmune diseases? Don’t laugh this off. In this address you’ll learn the impact humor can have on your child’s body and your family.

2:30 PM
Adult, Children and Teens Afternoon Sessions

A. Alternative Therapies for Children with Chronic Illness
Speaker to Be Announced

A talk about alternative therapies that can help children that suffer from autoimmune diseases like lupus. Acupuncture, Reiki, massage and more will be covered.

B. The Psychological Effects Lupus and Auto-Immune Diseases can have on children and their families
Jillian Rose, MSW
Supervisor, LupusLine and Charla de Lupus Programs/Lupus Chat Programs Hospital for Special Surgery

A talk about the emotional toll lupus and other chronic diseases can take on the child diagnosed with the disease as well as the family. Support, coping skills and more will be discussed.

There will be tables available throughout the program with information on:

· Clinical Trials and Research (presented by the SLE and Autoimmune Disease Center of North Shore LIJ Health Systems.)
· Help and information on lupus and autoimmunity in Spanish
· Advocacy both at home and in Washington

Brochures and information on our Kids and Teens Services and Programs will also be included in your workshop materials.