I had started this in hopes of some answers but sadly we lost my brother 5-27-09 @ 4:10p.m. laid him to rest 6-1-09 it was the sadest thing i have ever seen now all 3 of my brothers are gone, i still have 1 sister and my mom so i will hold on as tight as i can to them my heart goes out to anyone who has, have or know someone with AMN or ALD i have been threw both now, and it's still not any easier the 2nd time around i think it's worse. The baby of the family died in June of 94 he was only 9years old but we took care of him for 3years before he passed his twin was 24 and he seemed to go faster it seemed like it was only a little under a year. God Bless my thoughts are with you all. Meagan

I'm very sorry for your loss, Meaghan, and that I replied too late to your first post to make any kind of difference. Not that anything could have helped I imagine; and that's the toughest thing. I had your "Help Me Please" topic flagged for a long time - I just didn't know what to say. Words seem so useless, but there's comfort in this community (thank you rareshare.org people!). If it's possible for you to do so, for the sake of your family's future preparedness and/or peace-of-mind, I recommend that you all see a geneticist and have yourselves tested for the defect in the ABCD1 gene. My Mum, also a AMN sufferer, insisted that I did (fortunately, my result was negative), and it really has eased our minds (hers, especially) about possible future reoccurences of AMN in our family. (It looks like that, after 3 consecutive generations of heart-breaking disability, AMN has finally been bred out.) I hope your brothers (and nephew?) have found peace and joy and are free from pain and disability in the embrace of the next world. God bless and keep you. Mike

I'am very sorry for your loss. I understand what your going through, my mother had 3 childern who were born with congential adrenal hyperplasia. My sister past away from the disorder 26 yrs ago. My brother and I both have (cah) also. 2 months I had an attack that put me in the hospital for a week. The doctors thought I had ms, but a nureo dr. tested me for amn too. I have a mild form of the disease. I"ll say a prayer for you and your family again I'am sorry for your loss. God has taken your brothers to be in a better place , because god has a much bigger plan for them in heaven. God be with you.

I am sorry for your loss. The Myelin Project has created the Augusto Odone Young Investigator Award for AMN research to encourage young scientists to do leukodsytrophy research and find a cure for this horrible disease. We have to keep our scientists engaged in rare disease research.

Kia ora Meagan, I'm sure I can speak for all of my relatives dealing with disorder that our deepest condolences go out to you, your mum and family. This illness is a nightmare and tragedy all rolled into one. I am an ALD carrier as are both of my daughters. My eldest girl has two sons with ALD, the younger a twin (with a sister) - Daniel has had to undergo bmt to arrest his symptoms and he only turned two while in hospital. We started my older grandson Kavelli (3yrs old) on Lorenzos Oil early (than advised) so that he would get used to drinking it. I'm glad we did now, as Daniel's situation has challenged the 'age of onset' understanding. What I learn from yours, mine and my grandsons experience is that we have come a long way from when the disorder was first recognised, but there is still much much more to learn about X-ALD/AMN. I would gladly give my life up for my grandsons (my future), however, that not being an option, I'm determined to make damn sure their lives are not in vain. I would advise you likewise. Let's get in behind the Myelin Project and any other research institution wherever we are in the world and do whatever we can to eliminate this cruel curse from all our future generations. Arohanui Bxx