The New Year is here and we at the GFPD have hit the ground running, with lots of work underway and upcoming in the months ahead. As the terms of several of our original board of directors have come to an end, we are looking forward to welcoming new members and have said goodbye to some who have helped grow the GFPD from a small idea to the successful patient support and research foundation that it is today.
In the days before the GFPD was founded, families were just beginning to use the Internet to connect, discovering that other families like theirs were out there. John Harris moderated an email listserv for families whose children’s symptoms were mostly at the moderate or mild end of the disease spectrum and Pam Freeth connected parents of children with the most severe presentation of this disease. In 2010, Shannon Butalla joined with Melissa Gamble to co-found the Global Foundation for Peroxisomal Disorders, bringing together families impacted by peroxisome disorders all along the spectrum, from Peroxisome Biogenesis Disorder-Zellweger Spectrum Disorder (PBD-ZSD) to the related single enzyme peroxisomal disorders.
When the GFPD was incorporated and received its 501(c)3 public charity designation in 2010, we were a small parent support group of approximately 50 families. Just five years later, the GFPD connects more than 300 families from 30 countries and has a Scientific Advisory Board comprised of leading researchers and physicians in the field of peroxisomal disorders. Our conferences have brought together families and professionals from around the world to meet and collaborate on ways to improve the lives of patients with peroxisomal disorders. Family support has always been central to our mission, and we are already planning our next Family and Scientific Conference for 2017, as well as regional meet-ups for families in 2016.
As we’ve grown, our mission has also grown to encompass not just family support, but financial support of research goals in the scientific community. To date, we have supported research to the tune of $140,000 and are proud of our families and friends who have worked so hard to raise those funds though their own donations and fundraising events. The support we provide to the research community is not only financial, though, as we have a world-class team of Scientific Advisors who serve to shape and execute those goals, from developing and enrolling patients in clinical trials, to the recent development of diagnostic and treatment guidelines for PBD-ZSD.
As we move forward, we thank our Board of Directors for their years of service, and look forward to their continued participation in the growth of our organization. We are happy to announce the following Board transitions and updates:
Dr. Mousumi Bose will retain her current position as Medical and Scientific Liaison. We are grateful for Mousumi’s tireless collaboration with our Medical and Scientific community in an effort to promote greater understanding of peroxisomal disorders, as well as aide in the quest to find better treatment options.
In addition to her new duties as Secretary of the GFPD, Pamela Marshall will continue in her role as the Registry and Support Group Coordinator. Pamela has been instrumental in growing our Family Registry over the last five years, ensuring that no family has to face this diagnosis alone.
Heidi Harris will continue in her role as Communications Coordinator, while taking on new responsibilities as Vice-President and Interim Treasurer. Heidi has worked non-stop over the last several years to ensure the growth of the GFPD, taking on several important projects. Heidi designed our new website and keeps our community updated with social media and newsletter correspondence.
We are grateful for the continued support of Board Trustees Geoff Edgar, Woody Woodbury, and Anne Park Hopkins. Woody will be taking on important work as Fundraising Director, and Anne Park Hopkins will be working with Mousumi Bose to coordinate aspects of an upcoming drug screening project at the National Institutes of Health (NIH).
In her role as President during the GPFD’s first five years, Shannon Butalla has acted as a voice for the PBD community, spreading awareness and providing opportunities for families and researchers to engage in activities that support advancements in the medical care and scientific understanding of individuals with PBD. As liaison between the GFPD and other non-profit public charities and companies, Shannon has helped build valuable partnerships with individuals and organizations related to our patient and professional communities.
As we say goodbye to Shannon, who has stepped down from her role as President and Trustee, we thank her for her years of vision and hard work, and look forward to the exciting projects we have upcoming in 2016. The broadening interest in peroxisomes in a growing number of areas of research is exciting and gives us cause to hope for breakthroughs in the near future. Members of our Scientific Advisory Board have recently dubbed 2016 “The Year of the Peroxisome.” The GFPD plans to support all efforts to fulfill that title, and we invite all of you to stay tuned for what we expect to be a productive and exciting year!
Melissa Bryce Gamble
President and Co-Founder, The Global Foundation for Peroxisomal Disorders
Mother of Ginny (8/5/2008 - 4/25/2015)
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