Meet AxD Patients and
Join The Registry!
Science is progressing rapidly not only for leukodystophies, but especially for Alexander Disease. For the first time, a potential therapy is in clinical trials, and others are in pre-clinical development.
Having a comprehensive registry of patients not only creates a larger pool of participants for potential clinical trials, which makes Alexander Disease more “attractive” to pharmaceutical companies, but also gives researchers a more accurate picture of AxD.
That means we can potentially identify patients earlier, gain a greater understanding of disease progression, and achieve better patient outcomes. You can make a difference by registering yourself, or a loved one in the registry.
Get Support
Have you or a family member been diagnosed with Alexander Disease? We understand the information you have received may be new and confusing and it may be difficult to know where to go for further advice and information. This is where we can help and support you.
Please contact us and we will try to help in any way we can, for example by pointing you towards specialists in your area, connecting you with other members of the community, or sharing the latest news or lending an ear.
Meet Valentino
Valentino, the Angel of our lives, is now 4 years old. We eagerly awaited him and he was the most anticipated child in the family until he finally arrived on January 11, 2020…
Meet Isaiah
Isaiah has been a great warrior since before he was born! He clung to life through a very risky pregnancy and was born at 32 weeks weighing just 3lbs 14 oz. Isaiah spent his first 40 days in the NICU. He always reached his…
Meet Lilas
Back home in France, Doctors thought that Lilas’s delay was probably due to being premature without proper care at birth in the orphanage. They weren’t overly concerned and didn’t see a need to explore further at that time. They thought it would quickly improve with light paramedical care, which Lilas started at 2…
Meet Kuno
I was enjoying feeling Kuno's robust movements in my womb, anticipating a celebratory happy moment soon to come. This all changed at GW 36 - I am not sure if one would call it a 6th sense, gut feeling, or intuition, but I felt the urge to be scanned. Out of blue, there was this scary-looking severe…
Meet Christopher
When Christopher was 5 months old, we realized that he wasn’t hitting the milestones that he should have been. He was such a calm baby, he hardly ever cried…
Meet Olympia
Olympia came to this world, together with her twin brother, Albert, as a surprise for us. Olympia was born perfect, no issues whatsoever during pregnancy or birth, she was rosy…
Meet Hailey
Hailey was born perfectly healthy. She was such a beautiful baby, and was hitting all her infant milestones like rolling over and sitting up early…
Meet Aiden
Aidan Drakeley was born in July 2004. Prior to his birth we were informed by his doctors that he suffered from unilateral renal agenesis. He would be born with a single kidney…
Meet Chayse
Chayse is the youngest of three boys and ironically the largest at birth however, it wasn’t long till he showed signs of being a pickier eater than his other two brothers had been…
Meet Megan
Daniel Hughes was born 19 April 2010 in Atlanta, GA. Throughout the pregnancy, Daniel was 2 weeks behind on the body size, and 2 weeks ahead
Meet Daniel
Daniel Hughes was born 19 April 2010 in Atlanta, GA. Throughout the pregnancy, Daniel was 2 weeks behind on the body size, and 2 weeks ahead
Meet David
David was born a healthy and happy baby. He wasn’t a great sleeper and spit up all the time, but babies do that, right? Some of his early milestones were also a little slow in happening but babies develop at their own pace, right?….
Meet Jordyn
In the spring of 2015, Jordyn Conn wasn’t walking yet. She had turned one, the previous December, but her parents were not overly concerned…
Meet Meris
At 9 months old, Meris White was gagging and retching when her parents attempted to feed her pureed baby foods. Still, at her 9 month doctor visit…
Meet Elise
Born in September 2011, Elise Bonsky is a bright, vibrant 8 year old. Early in life, she suffered from a few developmental delays and seizures…
Meet Cameron
Life has thrown some curve balls our way, but through it all I have been blessed and cannot complain. I’m not saying it has all been easy as there have been peaks and many valleys…
Meet Grayson
Grayson lights up a room. I don’t know that there’s anybody who wakes up happier than Grayson…