PAF Warrior Wisdom Conference
October 19-21st, 2018 in Lewis Center, Ohio – see conference tab for more information. Please join us!!!
Pups for Propionic Acidemia
Pups for Propionic Acidemia 2019 Calendar will be available for sale at fall events! If interested in purchasing one, contact Michelle Ellis at [email protected].
PA Runners Update
Training is in full swing for those who are running a half or full marathon in the Fall. The PA Runners team has been working hard during the super-humid summer to add the miles needed to complete successfully the fall challenges.
Current team: Aubrey (PA parent for Jenna and Lauren); John and Amber (PA parents for Sebastian and Grant); Leslie (PA parent for Cadybug); Jen (PA friend for Gabriel); Chef Eve and (PA friend for Gabriel); Lou and coach Mark (PA friends for Gabriel); Marisa and Juan Carlos, team manager (PA parents for Gabriel).
Support the effort to improve treatments and create new therapies for PA or join the team with a distance and race of your choice
All abilities welcome!!!
Contact Marisa Cotrina if interested in joining PArunners or would like more information ([email protected])
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
New Grant Awarded
$32,912 grant awarded 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
Warriors Birthday and Holiday Card Club – time to sign up for 2018-2019.
Spring stories/articles due February 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.