PA/MMA Family Education Conference Rezumat
Pe 4 martie, 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, familii din 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.
Dr. Prada and Baker gave an overview of Propionic Acidemia and Methylmalonic Acidemia. Madi Hankins, un consilier genetic, gave a presentation Risk Assessment and Family Planning. She explained the probability of having a child with PA/MMA, diferite opțiuni pentru testarea in utero pentru a determina dacă un făt are PA, opțiuni de reproducere asistată, și adopție.
La prânz, Carly Abate, un specialist în viața copilului, led a breakout session on Caring for the Caregiver. Within small groups, participanții au discutat despre îngrijirea de sine și sfaturi & trucuri pentru a trata PA/MMA. Unele dintre îngrijirea de sine pe care indivizii le-au menționat ca ajutându-i să facă față stresului au fost: a conduce o motocicletă, tricotare, alergare, sănătate mintală, și yoga.
Carolyn Serbinski, a genetic counselor gave an overview about Registries and Clinical Trials. Ann Kozek, un dietetician, a susținut o prezentare despre Nutriția în 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, fratele lui Aidan cu PA, a putut să ofere tuturor o imagine de ansamblu asupra prototipului mic de pompă de alimentare pe care îl dezvoltă.
Suntem recunoscători pentru sprijinul CoA, Modern, 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
