Propionic Acidemia / Methylmalonic Acidemia Family Education Conference Summary

PA/MMA Family Education Conference Summary

On March 4th, the Propionic Acidemia Foundation partnered with Lurie’s Children’s Hospital for a combined PA/MMA family conference.  We were able to meet in their conference center.  Families from the Chicago area, as well as, families from Wisconsin, Indiana, Missouri, California, and Michigan were in attendance.  Thankfully, the snow that was forecasted did not arrive with the attendees.  During meals and in between presentations families were able to visit with one another.  There was a wealth of information shared among families.

Drs. Prada and Baker gave an overview of Propionic Acidemia and Methylmalonic Acidemia.  Madi Hankins, a genetic counselor, gave a presentation Risk Assessment and Family Planning.  She explained the probability of having a child with PA/MMA, different options for testing in utero to determine if a fetus has PA, assisted reproduction options, and adoption.

Over lunch, Carly Abate, a Child Life Specialist, led a breakout session on Caring for the Caregiver.  Within small groups, attendees discussed self-care and tips & tricks on dealing with PA/MMA. Some of the self-care that individuals mentioned as helping them cope with stress were: riding a motorcycle, knitting, running, mindfulness, and yoga.

Carolyn Serbinski, a genetic counselor gave an overview about Registries and Clinical Trials.  Ann Kozek, a dietician, gave a presentation on Nutrition in PA/MMA.

Brittany Smith, PAF’s Treasurer spoke about emergency preparedness and introduced PAF’s updated Care Notebook and new Emergency Preparedness Handbook for Those with Propionic Acidemia/Methylmalonic Acidemia.

Brenden Pragasam, brother to Aidan with PA, was able to give everyone an overview of the small feeding pump prototype that he is developing.

We are grateful for the support of CoA,  Moderna, HemoShear, and Nutricia for sponsoring the conference.  We were fortunate to have Garrett Austin take photos at the event.  The Penny’s Purpose provided handmade blankets to those in attendance.  Zoia Pharma provided low protein foods that attendees were able to take home with them.  Cambrooke provided low protein chips and pasta.

©Garrett Wade Austin

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