Parents of ALD Newborns | HealthUnlocked

Hello ALD parents, We've had some incidents with my son and I wanted to know if anyone else has been through this. My son started Hydro when he was 1 year old,...

Hello, I am expecting my second child and even though I dont know if she will carry the gene. I would like to store her cord blood in the event that my son,...

A team of researchers at Probably Genetic is working tirelessly to get undiagnosed Adrenoleukodystrophy (ALD) patients diagnostic answers faster. They are...

bluebird bio has launched a new website https://www.navigatingald.com/ to help guide parents through the process of learning that their child has been...

Minnesota ALD Registry Study (MARS) Are you interested in helping researchers at the University of Minnesota learn more about ALD? The Leukodystrophy Center at...

Please consider helping out with this survey. You'll be helping with research for ALD.

I want to know what kind of therapy it will help to my son to cure this adrenoleukodystrophy or what medication i need to do. I watched the movie of "Lorenzo's...

Hello Everyone, The Aidan Jack Seeger Foundation was established to address the need for information and newborn screening with respect to...

bluebird bio plans to host a caregiver advisory board on November 7th in advance of the ALD Connect meeting in Waltham, MA. bluebird is looking for 6-8...

How many of you members will be attending the ALD Connect meeting in Boston next month? I'm looking forward to seeing many of my families and meeting new ones...

My daughters newborn screening came back positive for ALD and we are currently waiting to see a neurologist. I have a son who was October 2017 is there a way I...

We just gifted our second round of Rare Bears for ALD boys. If you haven't got your application in yet, please send a request to join the Facebook group and...

From ALD Connect: Are you a parent whose child has been identified through newborn screening? The Leukodystrophy Resource and Research Organisation Inc. is...

I just wanted to remind you that the United Leukodystrophy Foundation's annual family conference is quickly arriving. It is June 27-29 in Itasca, Illinois and...

Hi everyone 👋 I just stumbled across this during my routine search on the internet for info on ALD. I take care of my twin brother who has Neonatal ALD. His...

Hi, I am a parent of a child diagnosed with ALD. It was found through the NBS and further tests were done to confirm. It is nice to be a part of community of...

Hey Everyone, Kyrie Did His First EEG Test On 2/26/19. She Said It Tested For Seizures. I'm Happy To Say Everything Came Back Good. He Turns 9 Months On...

We are excited to share that the the Minnesota Adrenoleukodystrophy Registry Study (MARS) is open! Please click on the link to enroll your child....

Bloodwork to check for adrenal insufficiency should be done at 4 months and repeated every six to detect AI early. It is easily treated with oral cortisol if...

Does anyone know of any efforts being made to include ALD in the prenatal genetic testing done for moms, which is typically done in the first trimester?

I wanted to give all you parents a heads up that the United Leukodystrophy Foundation will be having their annual conference in Eaglewood, IL. June 27-29. They...

It was recently determined time to begin daily oral steroids for my son. We have been prescribed hydrocortisone, but it only comes in a pill form. There has...

Could anyone share some info on how does the new born screening help in treating the child.

How to diagnose if I am the carrier or my wife is. The doctors just assume that it's my wife. The reason why this is important is because I am getting a bone...

I came here through aldconnect.org. I have two son's. Both of them are diagnosed with ALD. I came here looking for other people's experiences going through...

Necesito con urgencia tratamiento e información sobre la enfermedad

Hi, My name is Jessica. My newborn Child was diagnosed with X-linked Adrenoleukodystrophy back in June 2018. I was devastated and heart broken, all I could...

I am happy to share that North Carolina is following several other states by screening all diseases that have been added to the RUSP (Recommended Uniform...

Here is my story of how I had the news broken to me...let us know your story to help others:) My baby’s pediatrician/ our family doctor’s office called us on...

Hello Everyone! My name is Kerri and my son, Gregory was diagnosed with ALD in thanks to California adding the test to their newborn screening panel in 2016...