Shannon Butalla
Shannon Butalla 5 donations

The GFPD Conference, which will take place from July 17-21, 2015, is the most important and influential annual gathering for families affected by Peroxisome Biogenesis Disorder – Zellweger Spectrum Disorder (PBD-ZSD) and the doctors and researchers who treat & study the disorder. The conference encourages the exchange of personal experiences and provides scientific updates about the progress of PBD-ZSD research work and available medical options.

This year’s conference will host internationally recognized physicians, scientists, and professionals including:
• Dr. Gerald Raymond from The University of Minnesota in Minneapolis, Minnesota
• Dr. Nancy Braverman from McGill University in Montreal, Quebec
• Dr. Bill Rizzo from The University of Nebraska Medical Center in Omaha, Nebraska
• Dr. Eric Rush from The University of Nebraska Medical Center in Omaha, Nebraska
• Dr. Joe Hacia from The University of Southern California in Los Angeles, California
• Ann Moser, B.A. from Johns Hopkins University in Baltimore, Maryland.
• Dr. Richard Rachubinski from The University of Alberta in Edmonton, Alberta
• Dr. Michael Wangler from Baylor College of Medicine in Houston, Texas
• Linda Alsop, Director of Deaf-Blind Programs, from Utah State University in Logan, Utah
• Jeffrey Simmons, M.A.,CCC-A, from the Lied Learning & Technology Center in Omaha, Nebraska

The goal of the 2015 conference is to introduce families to professionals who support individuals with PBD-ZSD in the areas of genetics, metabolic specialty, neurology, vision, hearing, physical and occupational therapy, education, grief support, and palliative care. Additionally, families will have ongoing opportunities to connect and support each other through group activities and sessions.

The GFPD is partnering with The United Leukodystrophy Foundation and International Peroxisome Scientists, as they, too, are hosting conferences at The Embassy Suites Downtown/Old Market concurrent with the GFPD Conference. We have planned activities with these groups to facilitate community building and support across the organizations.

Medical appointments are available at Children’s Hospital & Medical Center, which is a big draw to the conference for many participants. Clinic visits with Dr. William Rizzo (Metabolic Specialty), Dr. Eric Rush (Genetics/Bone Density/DEXA Scans), & Dr. Donny Suh (Ophthalmology/OCT Scans) give families access to gifted professionals who treat and study PBD-ZSD.

Please consider supporting the Anderson family in their journey to the GFPD Conference. As children with PBD-ZSD surprise many and surpass ages never thought possible upon diagnosis, it is important for families to have ongoing support - medically and emotionally - to care for their child transitioning to adulthood.

With hope,

Shannon Butalla, President
The Global Foundation for Peroxisomal Disorders

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