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Family Support >>> |
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Third International Family Conference
draws 70 people from seven countries - August, 2005 |
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By Patricia V. Wood NBIA’s third family conference, held May 20 to 22 in Gaithersburg, Md., attracted 70 people, including 23 families from seven countries. The size of the group was similar to past conferences, although more countries were represented this year. Participants heard from parents, counselors, educators and scientists. The researchers and doctors were at the same hotel as the family conference, taking part in the Second Scientific Workshop on NBIA. Motivational speaker Brianne Schwantes, who kicked off the conference, described what it was like to live with a rare, chronic disorder. She has Osteogenesis Imperfecta, which causes brittle bones, but went on to earn a college degree and is now a spokeswoman for the National Institutes of Health. Her message was plain: never give up. Schwantes also appeared on a panel to discuss coping skills, along with Brigid Guttmacher, a licensed professional counselor who specializes in helping families cope with illness, life transitions, grief and loss; and Patti Hackett, a parent of an adult son who had life-long disabilities and who is an educator working with young adults with special needs. We had two more sessions on Friday after lunch before meeting with the researchers from the Scientific Workshop. First was a discussion on the important role our BioBank will play in research, and the steps families need to take to participate in future research studies. Then there was a discussion led by NBIA parents Bela Ferreira-Barbiero, Cheryl Lamos and Kris McGourthy who described education programs, leisure activities and work force training available to children and young adults with special needs. The scientists filled us in on their progress and research goals toward finding a cure for NBIA disorders. Many of the families had sat in on the workshop sessions to hear firsthand the scientific information and asked questions from the information they had learned. On Saturday, Genetic counselor Allison Gregory explained the basic rules of genetics and presented the results of the clinical pilot study held last year of 16 PKAN individuals that visited the Oregon Health & Science University where she works. Dr. Susan Hayflick spoke about her team’s work with the mouse model and fruit fly and said the PKAN mouse did not have the movement disorder that humans get. This suggests that human brain tissue is really important to help them with future knowledge of this disease. Dr. Penny Hogarth, associate co-director of the Movement Disorders Program at OHSU, discussed various treatment options available for dystonia. (See story on page 10.) A highlight for the families was the information exchange. The families spent two hours discussing what medications they have tried, what treatments they have pursued — and what roadblocks they’ve encountered to get services for their child. They shared tips and ideas. As usual, many families said they came away from the exchange feeling less alone. Angelika Klucken, president of Hoffnungsbaum e.V. in Velbert, Germany, provided an update on her group’s work to promote awareness and educate the public about NBIA in Europe. She inspired us with the progress they have made in a short time. Time was set aside for socializing, including a happy hour on Friday with some of the scientists who could join and a dessert social Saturday night. It gave the children more time to enjoy each other’s company as their parents became better acquainted. The board laid out its vision for the next few years — to award more research grants, encourage tissue and blood donations to the BioBank, and continue to collaborate with others working on other brain-iron diseases. The board challenged all families to do a fundraiser in the coming year and received feedback from families about what they would like to see at the next family conference. Two suggestions stood out: pairing an NBIA family who has been at a previous conference with a new family to help integrate the new family into the group with introductions and other assistance so they feel comfortable; and build in more “down time” during the conference so families can participate in a social activity together. Sessions that families would like to see in the future include ones on equipment options and future research possibilities. The board will continue soliciting advice for the next family conference with a goal of making each conference better than the last. |
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