Galactosemia Foundation

Galactosemia Foundation Contact information, map and directions, contact form, opening hours, services, ratings, photos, videos and announcements from Galactosemia Foundation, 350 Northern Boulevard STE 324/1079, Albany, NY.

Galactosemia Foundation is a national, non-profit, volunteer organization whose mission is to provide information, support, and networking opportunities to families affected by galactosemia.

09/29/2026

September is Newborn Screening Awareness Month.

We measure the Galactosemia experience in days.

“I met Harrison at a Galactosemia Foundation Outreach Event. He cuddled and tucked his head right into me. Mom explained that because he is blind it’s a feature special to his life. Vision is what normally pulls a baby's head up.

Meeting parents and hearing stories is so important. He had multiple surgeries due to retinal detachment due to bleeding. He had heart-warming baby cuddles for me. He lost his sight due to galactosemia. The liver produces the enzymes needed for blood clotting but galactosemia can cause bleeding during this critical stage. His story has always pulled at my heart. His mom is a rock star!” – Gillian Sapia

09/28/2026

September is Newborn Screening Awareness Month.

We measure the Galactosemia experience in days.

Multiples; Twins safety

This baby is wearing a wristband that says he has been screened.

He had been. The screen had his twin sister's name on it.

The heel prick samples were swapped at birth. The wrong baby was flagged. Eighteen hours and two hospitals later, the right one was in liver failure.

Their pediatrician had examined both infants that morning and said she'd bet the hospital had it backwards. She was right, and she was right because she had laid hands on the children.

Every other case I've posted this month is about what happened after a result came back. This is the one where the result had the wrong name on it.

A screen is only as good as the name on the sample. Patient identification at specimen collection especially with multiples deserves the rigor of a transfusion check.

💚 A CAMPING OPPORTUNITY FOR GALACTOSEMIA FAMILIES! 💚Looking for an opportunity to connect with other families in the rar...
09/25/2026

💚 A CAMPING OPPORTUNITY FOR GALACTOSEMIA FAMILIES! 💚

Looking for an opportunity to connect with other families in the rare disease community and make some unforgettable memories?

🏕️ Hole in the Wall Gang Camp – Maryland Family Camp is welcoming eligible families for a special three day camp experience filled with fun, friendship, and meaningful connections!

📅 October 23–25, 2026
📍 Queenstown, Maryland

Through its Family Camps, Hole in the Wall Gang Camp provides families with the opportunity to relax, reconnect, and spend time with others who understand the unique challenges of raising a child with a serious illness.

✨ Best of all, camp is FREE for eligible families!
If you're looking for a chance to step away from the everyday routine, meet other families, and create lasting memories, this may be a wonderful opportunity for your family.

📲 Scan the QR code on the flyer to learn more about eligibility and how to apply.

Please share with other families in our Galactosemia community who might be interested!

Research Opportunity: NIH Study on Premature Ovarian Insufficiency (Ages 11–19)The National Institute of Child Health an...
09/25/2026

Research Opportunity: NIH Study on Premature Ovarian Insufficiency (Ages 11–19)

The National Institute of Child Health and Human Development (NICHD) at the NIH is enrolling participants in a study of Premature Ovarian Insufficiency (POI).

POI occurs when the ovaries do not function normally at a young age, which lowers estrogen levels and can affect menstrual cycles, bone health, and overall well-being. POI is common in girls and women with classic galactosemia.

The study, led by Dr. Catherine Gordon, MD, MS, is looking at how hormone replacement therapy (HRT) with estrogen and progesterone affects the health of young people with POI.

Who may be eligible:
- Females ages 11–19
- Diagnosed with POI, or healthy volunteers with no known hormonal or other medical conditions

What the study involves:
- Clinic visits every 6 months for 2 years at the NIH Clinical Center in Bethesda, Maryland
- Visits may include a blood draw, occupational therapy, questionnaires, and imaging

To learn more or check eligibility, contact the NIH Clinical Center Office of Patient Recruitment and refer to Study #002141-CH:
- Phone: 877-888-3332 (TTY users dial 711)
- Email: [email protected]
- Online: go.nih.gov/002141CH

09/24/2026

September is Newborn Screening Awareness Month.

We measure the Galactosemia experience in days.

Before newborn screening, this was the screening program: A grandfather who came home once a week.

Ashley was born in 1984. Nothing flagged her. Her grandfather worked away and came home weekly, so he was the only one seeing her at intervals: more jaundiced each visit, abdomen distending, too lethargic to stay awake.

He kept saying she looked worse. An ER resident considered galactosemia and was right. Weeks in the NICU followed.

Every family in our September campaign has a day number.

Ashley's story doesn't.

Before screening, the answer was weeks, and only if somebody noticed.

The signs haven't changed. They are what should be examined while a screen is pending, because a pending result is not a negative result.

Forty-two years later, Ashley is telling her own story.
Galactosemia Foundation

Support the Galactosemia Foundation!Help us raise funds for research, outreach, and support programs for the Galactosemi...
09/17/2026

Support the Galactosemia Foundation!

Help us raise funds for research, outreach, and support programs for the Galactosemia community — and get something great in return!

Mabel's personalized, waterproof labels are perfect for:
👕 Clothes & coats
🎒 Backpacks
🥤 Water bottles
🍱 Lunch boxes..and anything else that tends to wander off! No more mystery items piling up in the lost and found. 🙌

They even offer special **"no dairy" allergy labels** — such a helpful way to keep little ones safe and give daycare and preschool staff a quick heads-up! 🥛🚫

**How it works:**
1️⃣ Visit **campaigns.mabelslabels.com** and search for the Galactosemia Foundation
2️⃣ Purchase your labels
3️⃣ They ship right to your door!

You get labels, we raise funds. 💛

📢 **Please share this post with your friends and family!** The more people who shop, the more we can raise for this important cause.

09/16/2026

September is Newborn Screening Awareness Month.

We measure the Galactosemia experience in days.

Imagine being told today that your daughter has been flagged for a positive newborn screening but it takes 12 days to confirm a deadly disease.

Google and a family waiting for answers...

The call comes after hours. Switch to soy formula. Go to genetics first thing in the morning.

Then the line goes dead and it's just you, a phone, and a search engine, until morning.

And the question you cannot stop asking is: why did it take this long to get in?

Eleven days earlier they'd been told something flagged. They weren't told what. They were told it was probably nothing.

09/16/2026

September is Newborn Screening Awareness Month.

We measure the Galactosemia experience in days.

A baby was admitted to the NICU on day 9 of her life having lost almost a kilogram. It wasn't until day 17 she was diagnosed with galactosemia.

Three courses of antibiotics because nobody knew what was wrong.

A lumbar puncture. A platelet transfusion. Close to liver failure. Classic galactosemia, confirmed at around two and a half weeks.

Four months later, the doctor who diagnosed her asked the family whether her case could be used to teach other hospitals how to recognise it.

We need partners like this to close the gap.

She turns one this week.

09/15/2026

September is Newborn Screening Awareness Month.

We measure the Galactosemia experience in days.

Day 10

The national goal for a time-critical newborn screening result is day 5 of life.

Ten days is eighty to a hundred feeds.

A baby waiting for a result is not waiting; something is happening at every feed.

09/14/2026

September is Newborn Screening Awareness Month.

We measure the Galactosemia experience in days.

Day 9
"It (lab value) wasn't that far off, so she would not have told me — ‘but since the baby looks sick, report to the NICU.’"

That's what a mother was told about her newborn's galactosemia screen. The value was borderline. It nearly wasn't passed on at all.

Three babies in our campaign got their answer on day 9. One was found by the screen. One was nearly not told at all. One was waiting on a holiday.

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350 Northern Boulevard STE 324/1079
Albany, NY
12204

Telephone

+18669007421

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