Organizations Filed Purposes:
The Global Foundation for Peroxisomal Disorders is dedicated to improving the lives of individuals with peroxisomal disorders by funding research, championing scientific collaboration, and empowering families and professionals through educational programs and support services.
Nearly 400 family members, patients, scientific researchers, physicians and professionals met in Washington, DC July 10th-15th to share knowledge, experiences, and to work together with the goal of pushing ahead meaningful treatments for individuals with peroxisomal disorders. This year, the GFPD offered sessions for caregivers, extended family members, siblings, professionals caring for individuals with peroxisomal disorders, and well as the scientific research community. Feedback from our community highlighted a need for conference sessions targeted specifically to local patient medical and therapy teams, so the 2019 Family and Scientific Conference included sessions on Deaf-Blindness, physical, occupational, and speech therapy and foundational information for new physicians and professionals about peroxisomal disorders. Individual family consultations at the 2019 Family and Scientific Conference were a unique opportunity for members of our Scientific Advisory Board to interact one-on-one with patients and families in small groups. Families were grateful for the access to physicians and researchers that have expertise in peroxisomal disorders and were able to take back information to their local medical team.
The 2019 GFPD Scientific Conference was held July 10th- 15th in Washington D.C. with scientific sessions geared toward potential therapies for peroxisomal disorders. Over 30 speakers as well as 100 attendees collaborated on novel treatment options for peroxisomal disorders. The innovative conference lineup included sessions on peroxisome biology and model systems, small molecule therapies, drug therapies, biochemical approaches to treatment. Sessions also included talks on therapies for hearing and vision loss as well as blood and liver disorders and stem cell and gene therapy approaches. During multiple Scientific Conference sessions, caregivers shared their experiences with disease progression and symptom management.
In 2019, the GFPD supported research funding aimed at getting treatments from the laboratory bench to the patient's bedside as quickly as possible. We continued to support a multi-year project to develop research resources for neurodegeneration and vision loss in peroxisomal disorders. We also continued to promote the retinal gene therapy project that we funded in 2017 and continued to push ahead drug testing of candidate drugs through the use of mouse models, as well as an assay development and screening project at through a postdoctoral fellowship at the National Center for Advancing Translational Sciences, using high-throughput drug screening to uncover therapies for children with PBD-ZSD. Additionally, we funded a study to assess dietary interventions in patients with a peroxisomal disorder, we funded a collaborative research study between Kennedy Krieger Institute, NIH/NCATS, and USC, and Jackson Laboratories to further our gene therapy and small molecule therapy development programs.
Executives Listed on Filing
Total Salary includes financial earnings, benefits, and all related organization earnings listed on tax filing
| Name | Title | Hours Per Week | Total Salary |
|---|
| Melissa Gamble | Executive Director | 40 | $40,195 |
| Jen Kerchoff | Board Member | 1 | $2,200 |
| Meghan Meyers | Board Member | 0.25 | $0 |
| Natalie Clouse | Board Member | 0.25 | $0 |
| Chris Ostertag | Board Member | 1 | $0 |
| Josh Mattefy | Board Member | 1 | $0 |
| Erica Golle | Board Member | 0.25 | $0 |
| Dennis Carlson | Board Member | 2 | $0 |
| Chad Johnson | Board Member | 1 | $0 |
| Mike Collier | Board Member | 0.25 | $0 |
| Kilian Bryce | Board Member | 0.25 | $0 |
| David Lapidus | Secretary | 1 | $0 |
| Brian Tims | Treasurer | 1 | $0 |
| Kelly Dauer-Hubschmitt | Vice Chair | 1 | $0 |
| Corin Chapman | Current Chair | 5 | $0 |
Data for this page was sourced from XML published by IRS (
public 990 form dataset) from:
https://s3.amazonaws.com/irs-form-990/202031989349301333_public.xml