PA

Our Kids

Melissa

Our Kids  / Melissa Propionic Acidemia Our daughter, Melissa Leigh reached a milestone this year – she graduated from Wayzata High School on June 5, 2007. This is a remarkable feat for a kid whose ammonia was near 2,000 when

Read More »
Our Kids

Martha

Our Kids  / Martha Propionic Acidemia Two years ago, I wrote an article for this newsletter detailing my experience with PA. At that time, I indicated we had just sent fibroblasts for mutation testing in an effort to help determine

Read More »
Our Kids

Laurenz

Our Kids  / Laurenz Propionic Acidemia Laurenz was born on March 3, 2004, and is now three years old. He truly was the missing puzzle piece in our family. We also have a set of twins, Antonia and Kilian, who

Read More »
Our Kids

Amber and Tiffany

Our Kids  / Amber & Tiffany Propionic Acidemia Hi everyone!!!! First and foremost let me start by saying that I’m just a mom and not a writer, so please forgive me of any errors you may find, just remember this

Read More »
Our Kids

Leah

Our Kids  / Leah Propionic Acidemia Leah is now 8 years old. There have been many changes in the past few years. We moved to a new house, built an in-law apartment for her Meme who watches her after school,

Read More »
Our Kids

Simona

Our Kids  / Simona Propionic Acidemia This is the story of my granddaughter. Simona, born July 1996, came into the world a month early. Almost immediately it was evident that she was not like the other preemies – she didn’t

Read More »
Our Kids

Teegan

Our Kids  / Teegan Propionic Acidemia Note: Teegan’s mom and dad have loved, lived with and cared for this little boy; I get the joy of being his grandma. This is written from my perspective.)   Teegan Keith was born

Read More »
Our Kids

Gabriel

Our Kids  / Gabriel Propionic Acidemia Hi everybody. We are delighted for the opportunity to share our story with the OAA family, hoping that it may help other families to go through a diagnosis of a metabolic disorder. My son

Read More »
Our Kids

Jose

Our Kids  / Jose Propionic Acidemia José Pablo has just seven years old. He was born at the 15 of May of 1996, after a normal pregnancy and childbirth.  Also his period of breast-feeding was normal. The problems appeared as

Read More »

Recent Post

flyer for webinar on GA1 natural history study on February 18, 2026.
GA-1 Natural History Webinar
Rare Disease Day 2026 – OAA Tshirt Fundraiser
Organic Acidemia Natural History Registry has migrated to a new platform!
NIH awards more than $15 million to fund two rare diseases consortia
picture of young noy smiling and holding handmade Rare bear
Abram & Asa, MMA Cbl B
two young girls sitting on a merry-go-round
Elizabeth (age 9) and Morgane (age 7), Propionic Acidemia
blonde haired baby with yellow onsie crawling on a blanket
Ryan, 5 months old, Propionic Acidemia
first page of the august 2025 OAA newsletter
Summer 2025 OAA Newsletter (Digital Version Available Now!)
photo of orange race car with the number 760 on the side driving on race track
Elijah (19), Tyler (22), MMA Mut 0, Liver/kidney transplant
toddler sitting on a knitted blanket next to some pink sunglasses
Emerald, Glutaric Acidemia, Type 1, Age 2
front page of the OAA Spring 2025 newsletter
Spring 2025 OAA Newsletter (Digital Version Available Now!)
flyer for OAA webinar about introduction to ABLE accounts
Intro to ABLE Accounts for OAA Families
Flyer for 2025 OAA rare disease day t-shirt
Rare Disease Day 2025 – OAA Tshirt Fundraiser
2025 OAA Fundraising Calendar Ready to Purchase!
first page of the OAA Patient Assistance program flyer
NORD’s new Organic Acidemia Patient Assistance Program
Nutricia Changes Production of GlutarAde
Jonathan, MMA Mut 0, Age 14
Eli, Glutaric Acidemia, Type 1, Age 3
Mead Johnson Formula Update – October 2024
Mead Johnson Formula Interruption – July 29, 2024
Jackson, Methlymalonic Acidemia, Cobalamin C, Age 9
Eithan, Propionic Acidemia, Age 2 – Ecuador
Luisa, Methylmalonic Acidemia Mut 0, Age 4 – Brazil
Thank you Sponsors!!
Upcoming Zoom Webinar – Meet our newest physician at the NIH!
Hope you can attend the 2024 FOD/OAA Family Forum
Ask Me Anything with flok!
Rare Disease Day 2024 – OAA Tshirt Fundraiser
3D avatar of woman with multicolored jumpsuit and chunky black boots
Update: My Newest Adventure – Michael Clapcich
Karli, Propionic Acidemia, Age 34
Raechel, MMA, Cobalamin C, age 20
Formula Shortage Survey
Holiday Fundraiser – Texas Roadhouse Gift Cards!
2024 OAA Fundraising Calendar Ready to Purchase!
Demo Derby Sibling Honors Brother and others with Organic Acidemias!
Meadow, 3-MCC
Leo – Isovaleric Acidemia, Age 20 months
Summer 2023 OAA Newsletter (Digital Version Available Now!)
Webinar Discussion on Liver/Kidney Transplant with other OAA Families
Join Us for a Dietician Talk-Exclusively for OAA Families
Update on the Rapid Blood Ammonia Testing Instrument
Katie – Glutaric Acidemia, Type 1
Cameron, Methylmalonic Acidemia, Cbl C, Age 6 years
Nolan, Propionic Acidemia, Age 18 months
Winter 2023 OAA Newsletter (Digital Version Available Now!)
Luca, Davide and Simone
Jose
Gabriel
Select Language

Subscribe to our Blog / Newsletter