Over 15 years of Accomplishments

RESEARCH

Awarded a $32,912 new research grant to Oleg Shchelochkov, M.D. and Charles P. Venditti MD, PhD, National Human Genome Research Institute, National Institutes of Health, Bethesda, MD “Diversion of Isoleucine and Valine Oxidative Pathway to Reduce the Propionogenic Load in Propionic Acidemia.” See summary  (2018)

Awarded a $43,645 New Research Grant to Dr. Hilary Vernon, McKusick-Nathans Institute of Genetic Medicine, John Hopkins University,  Maryland (see research page for more information)   (2017)

Awarded a $50,000 New Research Grant to Dr. Nicola Brunetti-Pierri, Fondazione Telethon, Italy (see research page for more information) (2017)

Sponsored research on propionic acidemia by minority students – Summer 2017 – summary

Launched The PA International Patient Registry in 2012 to provide a way for PA patients and families worldwide to improve the understanding of the disorders and accelerate research by reporting information about how the disorder affects them.  The Registry is itself an IRB-approved research project and the data collected will help characterize the condition of people living with PA. You can find out more on www.paregistry.org

OUTREACH

Education Conferences are hosted by PAF to bring families, medical providers and researchers together to learn from each other. PAF Exhibits at Meetings to increase awareness of propionic acidemia and PAF, network with providers, and increase knowledge.

PAF will host the Warrior Wisdom Conference October 19-21st, 2018 at the Nationwide Hotel and Conference Center, Lewis Center, Ohio

Launched the Warriors Birthday Club in memory of Jordan Franks with Deerfield High School Students in 2016.   Oak Lawn-Hometown Middle School took over in 2017 and continue to bring smiles to the faces of children with propionic acidemia and their siblings.   Warm Wishes Lead to a Partnership

Attended and exhibited at 2018 Genetic Metabolic Dietitians International meeting- Orlando, FL

Attended and exhibited at 2018 Society for Inherited Metabolic Disorders meeting- San Diego, CA

Participated in a Panel for Evening with Genetics – “Partners in Progress: Parents and Scientists Catalyze Research in Rare Disease”  – Houston, Texas – Evening with Genetics 11-15-17

Attended and exhibited at 16th Abbott Nutrition Metabolic Conference (2017) Summary of the conference.