Announcements

PAF awards a  $32,912 grant to Oleg Shchelochkov, M.D. and Charles P. Venditti MD, PhD at

National Human Genome Research Institute, National Institutes of Health, Bethesda, MD

See summary

Privacy Policy

The PAF Privacy Policy has been updated to include EU. The link to the Privacy Policy can be found at the bottom of every webpage.

Grant Applications

Due October 1, 2018

PAF Warrior Wisdom Conference

October 19-21st, 2018 in Dublin Ohio – see conference tab for more information.   Please join us!!!

Warm Wishes Lead to a Partnership – great article about the Birthday and Holiday Card Club

Fall Newsletter Articles due August 15, 2018

Please email to [email protected]     Please contact PAF if you would like to receive the newsletter electronically or update your contact information.

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

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

PAF sponsors research on propionic acidemia by minority students – Summer 2017

Last summer, Propionic Acidemia Foundation (PAF) established a collaboration with Dr. Patricia Schneider from the department of Biology at Queensborough Community College (QCC, Queens, New York) to sponsor a project on the impact of propionic acid in the incidence of autism in Propionic Acidemia (PA) affected individuals. The project was part of the research initiative “Bridges to the Baccaularate”, a National Institute of Health (NIH) funded project that provides resources for a summer research project for minority students. Designed and mentored by Dr. Marisa Cotrina, herself the mother of a PA child, this work investigated the incidence of autism in the propionic acidemia population and the validity of mouse models of autism to study the impact of propionic acid in brain. A unique asset of the project was the utilization of the data collected by the PAF PA International Patient Registry. The authors of the study are currently preparing a manuscript for publication of the results found.

At the end of the project, our student, Sindy Ferreiras, had the opportunity to present her research in the area of Neuroscience at the Annual Biomedical Research Conference for minority students (ABRCAMS) that took place in Phoenix, Arizona last November. Well done, Sindy!

PAF participates in a Panel for Evening with Genetics

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

PAF Awards a $43,645 Research Grant to Dr. Hilary Vernon

McKusick-Nathans Institute of Genetic Medicine, John Hopkins University,  Maryland (see research page for more information)

PAF Awards a $50,000 Research Grant to Dr. Nicola Brunetti-Pierri

Fondazione Telethon, Italy (see research page for more information)

PAF Attends 16th Abbott Nutrition Metabolic Conference

Summary of the conference.

PROP Nutrition Guidelines are now available.   NMG PROP announcement Final

PROP Nutrition Guidelines are now available online.  The Nutrition Management Guideline for individuals with propionic acidemia (PROP) is part of a larger project undertaken by the Southeast Regional Newborn Screening and Genetics Collaborative (SERC) (HRSA Region 3) and Genetic Metabolic Dietitians International (GMDI) to develop nutrition management guidelines for inherited metabolic disorders (IMD).

PA International Registry

The PA International Registry provides 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

Pounding the Pavement for PA

Join the PAF Pounding the Pavement for PA team or start your own!  Run in any race, around your block, or become a “virtual runner” Contact Brittany Smith for more information at [email protected] .  Check out events to follow our progress. 

Deerfield HS Chest 2016 Raises $168,332.35 for PAF

Last September, PAF learned the amazing news that our organization was chosen as the beneficiary of Deerfield High School’s yearly School Chest fundraising campaign! This is a humbling honor, especially knowing the many incredible and worthy charities that were considered this year!

We know that part of the reason why PAF was chosen is because of Jordan’s connection to DHS. To honor Jordan and other children who have Propionic Acidemia, the students, faculty and community of DHS are dedicated to spreading awareness and raising money for PA.