2004 Family Conference Highlights
Kansas City, Missouri - July 2-4, 2004
The "Fountain of Knowledge" family conference marked the thirteenth biennial conference hosted by the Foundation for Ichthyosis and Related Skin Types. The weekend created wonderful memories for many individuals and families. The conference provided an opportunity to meet others whose lives have been affected by ichthyosis and to speak with medical professionals who specialize in its treatment.
Three hundred sixteen members attended, the most ever for a family conference! International members traveled to Kansas City from as far away as Belgium and Bermuda. Upon arrival, every guest received a bag full of lotions, creams, and other goodies, including a conference T-shirt. A general session on the latest in ichthyosis research was a great way to start the weekend.
Top dermatologists and experts in ichthyosis lead breakout groups on specific disease types and the latest treatment options. Discussion groups for men, women, moms and dads provided the opportunity to talk about fears, anxieties, and successes. A panel discussion with local doctors provided extremely helpful information about eyes, ears, and nutrition issues. Support for unaffected siblings was an added bonus in the weekend activities. Parents and unaffected sisters and brothers learned skills and gained helpful insight about living with someone affected by ichthyosis. Psychologists, professors of behavioral pediatrics, and nutritionists guided sessions with the teens and pre-teens and encouraged them to talk about coping skills, fears, making good choices, and self-esteem.
A field trip to Science City, an interactive hands-on museum, was a great way for the teens and preteens to socialize with one another. Saturday evening's entertainment was perfect for the entire family. Armed with popular dance music, the DJ also offered a game show format, including contestant booths, buzzers and fancy lights.
Breakouts about retinoids treatment, working with your government, school issues, and social security insurance provided valuable information and supportive insight to many of our members. Patients with ichthyosis had access to private sessions with country's leading experts in ichthyosis. These clinical screening appointments were very popular and, for some, it was the first time individuals had been given an accurate diagnosis.
Our closing speaker, John Foppe, reinforced the message that -- "Our only real handicaps are those mental and emotional ones that prevent us from participating fully in life." Our conference members departed from Kansas City with an overwhelming feeling of belonging, caring, and an armful of knowledge. To have the opportunity to spend the weekend with people who look, feel, and struggle with the same experiences, is priceless.