Organic Acidemia Association Public Page

06/09/2026

💙 Living with MMA or PA? Your voice matters.

The COMPASS Study is an observational research effort exploring what life is really like for people in our community.

✨ No new treatments required

✨ Your or your loved one’s medical records are collected securely

✨ $250 + free access to your or your loved one’s consolidated medical records as compensation for your time.

By participating, you can help researchers better understand MMA or PA and shape the future of care for everyone affected.

[[👉 Learn more and see if you're eligible]] {{[https://go.pic.nc/t6k](https://go.pic.nc/t6k)}}

06/09/2026

Kiss and colleagues reviewed 10 Australian children with newborn screening–identified isovaleric acidemia (IVA).

Initial C5 acylcarnitine levels ranged from ~1 to 64 μmol/L. Higher C5 levels were associated with greater clinical severity, including metabolic instability, hospital admissions, and hyperammonaemia. However, at last follow-up, all 10 children had normal neurological outcomes, including those with markedly elevated C5 levels.

These findings suggest that while newborn screening and early metabolic management are effective, initial C5 levels alone may have limited value in predicting long-term neurodevelopment.

https://doi.org/10.1002/jmd2.70094

Neurological Outcomes of Newborn Screening-Identified Isovaleric Acidemia: A Case Series Exploring Initial C5 Acylcarnitine Levels
Sharmila Kiss, Gary Lazarovski, Maureen Evans

06/02/2026

As discussed during the recent OAA Town Hall, we are hosting this upcoming webinar to discuss and learn more about the clinical trials process.

https://us02web.zoom.us/meeting/register/eRDR24ZZSgWXgMh27RHhlA #/registration

06/01/2026

https://www.silive.com/youthvoices/2026/05/facing-a-rare-illness-this-staten-island-teen-has-turned-adversity-into-inspiration.html

Our children making a difference! Thanks Kyle for designating fundraising funds to OAA! Congratulations on your graduation 👨🏻‍🎓!

"I’m capable of doing whatever I dedicate myself to," said the St. Peter's senior.

06/01/2026

June 2026 OAA Calendar page is a full circle of love for our Glutaric Acidemia Type 1 children! Happy Summer!

05/26/2026

Hi - it’s that time again - graduation season! If you would like to have your child, grandchild included in our OAA graduate collage in the next newsletter - share the photo in the comments or email Raymonde DeGrâce at [email protected]. We love to share our kids successes!

05/26/2026

📣 DON’T MISS OUT! 📣
Time is ticking, everyone! ⏳ The deadline to register for PKU in the Park is officially May 31.
We want to see as many of you there as possible, but you have to secure your spot before the clock strikes midnight on the 31st. Don't wait until the last minute—head over and sign up now!
✨ Why join us?
• Connect with the community 💙
• Fun activities for all ages 🌳
• Great food and even better company!
🔗
https://alliancepkufamilies.org/pku-in-the-park/
Hurry and register before time runs out! Let’s make this the best PKU in the Park yet. 🏃💨

05/26/2026