Recommended
- By Walter · Posted June 20, 2008
- Journal · 24 recommendations
- Hi everyone. We added a new feature today that you can use to support your groups and the organizations that sponsor them, and get the word out about the causes that are important to you. If you visit ...
- By Walter · Posted May 5, 2008
- Journal · 8 recommendations
- Hello everyone. We just added a new feature to help you follow the conversations that you are participating in. You will now get a notification whenever someone replies directly to one of your replies ...
- By Walter · Posted June 1, 2008
- Journal · 7 recommendations
- Hello everyone. I'm writing to let you know about some long overdue improvements that we'll be making to this site's messaging system later this week. The messages section is the most frequently visited ...
- By Walter · Posted June 10, 2008
- Journal · 6 recommendations
- Hello everyone. Just a quick note to let you know that the improvements to the message system that I wrote about previously are complete. You can check them out now. You'll notice that we've grouped your ...
- By revdocwlk · Posted April 17, 2008
- Discussion in Living with a leukodystrophy · 6 recommendations
- Hello! Welcome to this new section of the ULF web site. I am Bill Kintner, ULF Vice-President and a parent of a child with MLD(now deceased). With my wife, Colleen, we have been the vice-presidents of ...
- By Tasha · Posted June 12, 2008
- Journal · 5 recommendations
- Greetings from TeamInspire! I'm your friendly neighborhood designer, here to tell you about some new features. You might notice that today we revamped your member homepage - https://www.inspire.com/member-home.pl ...
- By cubsportgal21 · Posted September 12, 2008
- Journal · 4 recommendations
- Graduating from high school in 2006. I came to face a disease i knew nothing about. It brought me to my knees, and doctors had no clue to what was going on with me. Until my mom stood her grounds and ...
- By DarrenB · Posted September 2, 2008
- Discussion in Undiagnosed - White matter disorders of unknown origin (UND) · 4 recommendations
- Hi my name is Darren, We live in the Chicago area and have a 4yr old daughter Sarah. She was given the title of undiagnosed Leukodystrophy in November 2005. For those that have been to the ULF conferences ...
- By Sarina · Posted May 12, 2008
- Discussion in Alexander disease (AxD) - Adults · 3 recommendations
- If so please contact me at let me know what your symtoms are? Ther testing me for it and try to figure things out. WAS diagnosed with Leukodstrophy. Thanks Sarina ...
- By BMA · Posted July 25, 2008
- Discussion in X-linked adrenoleukodystrophy (X-ALD) - Female carriers · 2 recommendations
- I am almost 50 years old. I have a son who discovered he had ALD June 2004, his 4th year of college. We discovered he had Addison's disease when he was 13 years old but was never tested for ALD. It seems ...
- By wenALD · Posted May 17, 2008
- Discussion in X-linked adrenoleukodystrophy (X-ALD) - Female carriers · 2 recommendations
- This would be nice if we could support one another and maybe give each other information that might help alleviate some problems. I have four grown children. My sons, 33 and 28 were diagnosed in 1986 ...
- By KateNDalton · Posted October 22, 2008
- Discussion in Adrenomyeloneuropathy (AMN) · 1 recommendation
- My dad has AMN and has been in a wheelchair for a few years now. He steadily progressed to having to use the wheelchair. He started showing signs in his 20's and is now 64. He still has his stubborness ...
- By anedelk · Posted August 14, 2008
- Journal · 1 recommendation
- WELCOME TO HOLLAND by Emily Perl Kingsley. c1987 by Emily Perl Kingsley. All rights reserved I am often asked to describe the experience of raising a child with a disability - to try to help people who ...
- By asnyder · Posted June 5, 2008
- Journal · 1 recommendation
- my son has had trouble with motor development and weight gain since he was born and recently we went for an MRI that came back abnormal, the neurologist seems to think his symptoms and MRI is most consistent ...
- By JAMIESBUSY · Posted May 19, 2008
- Journal · 1 recommendation
- My mother always told mt that "life is what happends to us while we are making other plans." boy now I know what she was saying. I never planned for my children to be faced with this disease, i never ...
