We are here for you

The ULF is dedicated to being a resource for families during all stages of their leukodystrophy journey. Families who are newly diagnosed sometimes aren’t even sure what kind of support they are looking for. When you reach out, we will ask you specific questions to try and determine what kind of resources you would most benefit from right now. Are you just looking for some direction to find emotional or moral support? Are you looking for a second opinion on the diagnosis? Are you wondering how this could impact the rest of our family? The ULF is here for you. 

If you aren’t ready to reach out yet, please explore the website and hopefully you will find answers to questions you weren’t even sure you had yet. Take a look at our “Find a Physician” page and see if there is a doctor near you that could offer some additional insight.

Check out our Annual Conference and see if attending this event could help you see that there are many people just like you searching for answers, and there is a place to come together and find them. 

Remember, you are not alone. And we’re not giving up, because you’re not giving up.

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