This form is ONLY for MLD patients age 13 and older, and MLD caregivers & families.
I am a ...
Please select all that apply
Last - (optional)
Consent to send email updates
I give permission to use my email and other data supplied on this form only in connection with updates and submissions to the MLD PFDD project. We promise to not share or use your information for any other purpose.
Yes, please email PFDD updates. Hidden Consent to send SMS messages (optional)
I give permission to allow the MLD PFDD organizers to message me only in connection with updates and submissions to the MLD PFDD project. We promise to not share or use your phone number for any other purpose. Message data rates apply.
Yes, you may send updates by SMS. Address
No street address ... just city, state/province, country.
Form of MLD in my family
Late Infantile - first symptoms before 3 years old
Early juvenile - first symptoms 3-8 years
Late juvenile - first symptoms 9-19 yrs
Adult - first symptoms age 20 and up Therapies
(optional) Please select any and all therapies you or your MLD loved one(s) has/have had.
Your Story, Desires, and Values
Please feel free to provide a response to all of the following questions, or to focus your remarks in just one or more areas.
Briefly introduce us to your MLD loved one, your diagnostic journey, and their current symptom burden. How has their condition changed over time? What MLD symptoms are the most burdensome? Please explain why and give examples from daily life where possible. What have you done to treat or manage the symptoms of MLD and how has it helped, if at all? include any treatment approach, including prescription or OTC drugs, experimental therapies in clinical trials, non-medical and more holistic approaches, and even lifestyle modifications. Please explain why and give examples from daily life where possible. Until we have a cure for MLD, what would represent an important benefit from a new treatment for you? What risks would you accept for a given new treatment? Please explain why and give examples from daily life where possible. Other comments you wish to share
Please be sure to click SUBMIT to record your response. Thanks!