Information on this website

MLD Foundation is a non-profit 501(c)(3) organization dedicated to those affected by MLD. We are not medical professionals and do not profess to have absolute knowledge about MLD, however, we represent the collective experiences of many hundreds of families, two decades of experience direct hands-on experience with families, the disease, and many hundreds of relationships and meetings with researchers and doctors knowledgable about MLD. 

The progression of MLD is known to be very different from person to person so information provided by MLD Foundation should be used only as the basis for specific discussions with your family’s medical professional. The information here was gathered carefully but you must always double check and confirm with your loved one’s medical professional(s).

Please feel free to contact us about your loved one’s specific progression and circumstances for the best guidance and perspective.

Information from MLD Foundation’s MLD Family™ Discussion List

The MLD Family™ is an ad hoc group of individuals sharing their personal experiences and information they have gathered. The MLD Family members, while experienced and passionate, are not medical professionals. All of our experiences vary – but collectively there is wisdom, experience, perspective, support, and comfort to be found here. 

Please remember that we are not medical experts, and even the trained experts that occasionally do post to the list are acting only as helpful individuals — diagnosis and treatment is a very personal thing that cannot be done properly via e-mail – be sure to confirm and consult with your local medical professional before taking action on any items discussed on the MLD Family discussion list.

The Internet, Search Engines, Dr. Google, Dr. FaceBook, etc.

The Internet can be both your friend and your foe. Do not take anything at face value that you read on the net. You can find any “truth” that you wish on any topic on the Internet. Missing, dated, correct, and wrong information all look the same. 

The experience of one family does not represent the experience of all families.  Please check with multiple MLD Family™ members and your personal medical professional(s) before taking action based on any information you find on the Internet.

Links to Third Party Sites

We have provided links to certain third party websites as a courtesy. By providing these links, we are not endorsing, adopting or agreeing with any of the content of the linked sites or the products or services of that third party. We do not control the content of third party sites and that content is not part of our website. We expressly disclaim any responsibility for the content of any third party sites linked to our website or the products or services of that third party. We do not make any representations regarding the ongoing content or continued accuracy of materials on third party websites or the products or services of third parties. We urge you to use discretion when you access any third party sites linked from or to our website.

Likewise, the content of links on our site to third party websites can change and disappear at the will of the third party as they update their site.  We do try to keep our external links up to date – if you find one that is not working or goes to inaccurate or inappropriate content please let us know and we will try to fix or redirect it. 

Disclaimer Update History

4/2/2006 – Original content written
8/30/2021 – Minor updates when transferring to the new website platform. Added paragraph about non-functional third party website links.