In 2020, the ML4 Foundation once again will conduct natural history at the ML4 Family and Researcher Conference! By teaming up with our colleagues at Massachusetts General Hospital (MGH), we will hold a neurology and rehabilitative medicine clinic on Friday, May 8 and Saturday, May 9 prior to the meeting. We want you and your child there to engage with Dr. Albert Misko and Dr. Brian Wishart!
Natural history data collection is essential to the process of developing a treatment for MLIV. By regularly collecting information from MLIV patients and families over several years, doctors can track how people with MLIV experience the disease over time and how this impacts their function. One of the most important ways that parents and children with disease can help develop a treatment is by contributing to ongoing natural history research.
Using an IRB (institutional review board) protocol from MGH that allows these doctors to see MLIV patients, collect information about them, and collect blood samples from them and their parents. Drs. Misko and Wishart will schedule neurologic and rehabilitative evaluations at the conference for each MLIV patient in attendance. Families will have individual consultations with these experts while also contributing valuable information to MLIV science!
The ML4 Foundation wants to help families with their children attend NeuroClinic so we are offering a stipend for travel expenses and lodging for one parent and MLIV child who fully participate in the neuro-clinic by 1) attending the meeting together; 2) attending your doctor visits with Drs. Misko and Wishart; 3) giving blood samples from the MLIV individual and from MLIV parent; and 4) completing questionnaires about your MLIV child. The ML4 Foundation is offering a stipend of up to $250 for domestic economy travel or up to $500 international economy travel and 2 nights paid at the conference hotel rate of $269.00 (see FAQ for NeuroClinic Participants for more details).
NeuroClinic appointments take place Friday, May 8th and Saturday, May 9th
Plan for around 1.5 hours with Dr. Misko and Dr. Wishart each. When you register, we will contact you and let you know a time for your appointment on Friday or Saturday with the doctors. During the times when you are not meeting with the doctors you are free to enjoy Boston!
You will have time to ask these specialists questions about MLIV. Please take time before the meeting to think of your questions, and of how you would like them to help you! Also, please bring copies of any medical records you have or can get including genetic information, neurological, ophthalmological, orthopedic, or any other medical records. Thank you for joining us in this research!