Spring Newsletter is now available under resources.
PAF at SIMD – click here
New Guidelines Published – click here
New Grants Awarded
$48,500 grant awarded to Guofang Zhang, PhD, Duke University
“Propionyl-CoA and propionylcarnitine mediate cardiac complications in patients with propionic acidemia” See summary of Project
$33,082.12 grant awarded to Eva Richard, PhD, Universidad Autonoma de Madrid, Spain
“Cardiomyocytes derived from induced pluripotent stem cells as a new model for therapy development in propionic acidemia” See summary of Project
Endpoint Outcomes is working with a biotechnology company to better understand what it is like to live with and care for someone with Methylmalonic Acidemia (MMA) and Propionic Acidemia (PA).
If you are person with MMA or PA or if you are the primary caregiver of a person with MMA or PA, you may qualify to participate in their interview study. See flyer
Fall stories/articles due August 15th. Please email to [email protected] Please contact PAF if you would like to receive the newsletter electronically or update your contact information.
Due October 1, 2019 – For questions, contact [email protected]
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.
PA Family Days
Family Day is an opportunity for PA Families and Friends to get together in a casual atmosphere to share stories and information. If you would like to help plan a family day, please contact [email protected]
If you or someone you know is planning a fundraiser or event please email us and let us know about it. We would love to post it for all the families to see.
Email [email protected]