Heart to Heart PA Gathering – An Educational Family Event
Focus on the impact of Propionic Acidemia on the heart.
Friday, July 21 – Saturday, July 22, 2023
Evergreen Park in Kidron, OH
4434 Kidron Rd.
Dalton, OH 44618
FRIDAY, JULY 21: Registration begins at 3:00 pm on Friday afternoon at the gym building. Dr. Devyani Chowdhury, Bart Bijnens (from Spain), and their techs will have the scheduled free heart clinics all day Friday and 8 am – noon on Saturday. Note*Dr. Chowdhury’s clinics are strictly for research purposes and require registration in advance. She will need consent from you, and she will print a report for you to take along to your doctors, but this should not take the place of regular cardiac care. Also note: If you are scheduled for Dr. Chowdhury’s clinic- they will be set up in the gym building all the way at the back of the park. You can enter at the double doors at the front of the building. If your echoes and EKGs with Dr. Chowdhury are scheduled before then, please know that you are welcome to hang around the park until we open the building. We won’t be serving lunch on Friday, so if you do come early, bring your own picnic lunch. The Kidron Town & Country restaurant (located a 1⁄4 mile away) will be open from 7:30 AM- 2:00 PM. They have good
food for a reasonable price if someone wants to try them out! You can easily walk the short distance- there are sidewalks all the way.
*CPR Training begins at 5:00 in the Gym. If you signed up to take the training or refresher course, please make sure you are there by that time. EMS personnel from Kidron Fire will be assisting you. We have nine manikins, so we will be doing two courses with 18 people in each group. The first group starts at 5:00 PM and will train for an hour. The
second group will begin at 6:15 PM and finish at 7:15 PM.
*CoA Therapeutics, Moderna, Nutricia, HemoShear, and Zoia Pharma will each have a table there with tons of info and free samples to share. They will be there for both days. Please make them feel welcome and ask lots of questions- that’s what they are there for.
*There will be plenty of low-protein food samples, low-protein food lists, Care Notebooks, Emergency Preparedness Guides, and other giveaways.
*Weather permitting, we will be outside enjoying the sunshine, where the children will have plenty of space to play. We’ve scheduled a local food truck to be there for supper. The menu will be barbecued veal burgers, French fries, and veggies and dip.
SATURDAY, JULY 22
8:30 am – 9:00 am Registration and Breakfast – fresh fruit cups, pastries and coffee
* The park is equipped with a large playground area and lots of cement and blacktop.
Your children are welcome to bring bikes, scooters, rollerblades, rip sticks, hoverboards,
jump ropes, etc.
9:00 am: Welcome from Sue Weaver and Jill Chertow, President PAF
Dr. Devyani Chowdhury, Bart Bijinens (from Spain), and their techs will continue with the free heart clinics and hopefully have time to share a few echoes to show us the differences between a healthy heart, a PA affected heart, and a PA carrier heart. Note* Dr. Chowdhury’s clinics are strictly for research purposes. She will need consent from
you, and she will print a report for you to take along to your doctors, but this should not take the place of regular cardiac care. Also note: If you are scheduled for Dr. Chowdhury’s clinic- they will be set up in the gym building all the way at the back of the park. You can enter at the double doors at the front of the building.
9:15 am – 10:00 am: Olivia Wenger, MD, New Leaf Center Pediatrician – Introduction to Propionic Acidemia/Beginning treatment with diet
10:00 am – 10:30 am: Break to visit with exhibitors
10:30 am – 11:15 am Devyani Chowdhury, MD, Cardiology Care for Children, Echo comparisons
11:15 am – 11:45 am Break
11:45 am – 1:00 pm Lunch/small group discussions – A haystack lunch will be provided by Byler’s Barbecue
1-2 pm: D. Holmes Morton, MD, Central Pennsylvania Clinic, “Propionic Acidemia with Cardiomyopathy, Arrythmias & Seizures: How do medications help control metabolism? What does liver metabolism have to do with the heart & brain intoxication? How do metabolic therapies work? What is in a Metabolic Formula? What do amino acids do in a formula? Designing formulas – What could possibly go wrong? Is propionic acidemia a single-gene disorder? The emerging complexity of genetics & metabolism – Exomes and Genetic Medicine
2:00 pm – 2:30 pm Break
2:30 pm -3:00 pm John Clark, MD, Cardiologist Akron Children’s Hospital – Discussion on Heart Rhythms and QTc intervals, etc.
3:00 pm-3:30 pm: Brandon Smith, MD, New Leaf Clinic, Cardiologist, Akron Children’s Hospital – “What is Cardiomyopathy”
3:30 pm – 4:00 pm Questions/Answers -*We will have a question-and-answer session. If you have a question that you would like to ask, but are too shy to ask ☺, write it on a piece of paper and bring it along. We will have a question box and we will try to get your question answered.
4:30 pm Final Comments – Grab ‘n Go meat and veggie subs from Red Tomato, a bag of chips, a cookie, and a bottle of water.
Weather permitting, the children can play outdoors (with the gym for back-up).