The United Leukodystrophy Foundation Support Community connects patients, families, friends and caregivers for support and inspiration. This community is sponsored by the United Leukodystrophy Foundation, an Inspire trusted partner.
The United Leukodystrophy Foundation(ULF) would like to remind visitors and community members that the information, including but not limited to, text, graphics, images and other material contained on this website are for informational purposes only. The purpose of the ULF group on this website is to foster broad consumer understanding, knowledge, and discussion of the various Leukodystrophies. It is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health care provider with any questions you may have regarding a medical condition or treatment and before undertaking a new health care regimen, and never disregard professional medical advice or delay in seeking it because of something you have read on this website.
Contact
224 N 2nd Street
Suite 2
DeKalb, IL 60115
Phone: (800) 728-5483
Fax: (815) 748-0844
office@ulf.org
ulf.org
Community Leaders
We are excited to announce that the new Inspire Android app is available and ready for download. Now, Android users can connect with other patients and caregivers from our convenient, easy-to-use app ... Show more
Hello! My name is Steph Shuff, and I am a writer working here at Inspire. Every month, I help to write, edit, and publish our Monthly Dose newsletter, a monthly email that highlights articles from ac ... Show more
Dear Members, Many of us have been involved in clinical trials, or have considered enrolling in one, or have supported someone who has. At Inspire, we believe that all of us, as patients and caregiv ... Show more
Please help my friend and colleague's ten year old son who has a rare bone marrow disorder and is in need of a transplant. See his story below. Please consider donating via #bethematch . Matt was ... Show more
I happened to see a Joe Rogan - Mel Gibson interview, where he (Mel) took his 91yo father to Panama for the therapy and it improved alot of his functions. He lived 10 more years. The company, Stem ... Show more
I need some kind of hope... anyone? An example of a child diagnosed with a high Loes score >= 19 that had something positive happen... please inspire me!
Have you looked at your member profile lately? We’ve made changes to make it easier to customize your profile, and you can be the first to try it out! Note: These changes are o ... Show more
Just a quick reminder to all of you that the ULF's annual conference will again be held virtually on Friday, June the 25th and Saturday June the 26th, There will be a host of topics you can watch an ... Show more
Dear Members, This morning we launched our COVID-19 vaccine dashboard, and I invite you to explore it here: http://www.inspire.com/covid19vax All of us at Inspire are encouraged and deeply thankf ... Show more
I have read that in ALD mothers, the disease is a disease of the spinal cord. I have also read that many mothers are no longer able to walk by the time they are 60 years of age. I haven't read anyth ... Show more
