Travel to the 2018 ML4 Family and Researcher Conference for free!
In 2018, the ML4 Foundation will using the ML4 Family and Researcher Conference to conduct natural history research at the meeting! By teaming up with our innovative colleagues in the department of neurology at Massachusetts General Hospital (MGH), we are going to hold a neurology clinic on Sunday, June 24th and Monday, June 25th at the meeting. We want you and your child there to engage with Dr. Florian Eichler and Dr. Albert Misko!
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. Eichler and Misko will schedule neurological evaluations at the conference for each MLIV patient in attendance. Families will have individual consultations with these esteemed rare disease experts while also contributing incredible information to MLIV science!
Dr. Misko works closely with Dr. Yulia Grishchuk and others at MGH on treatments for MLIV. As you know, we can learn a lot from MLIV mice, but it’s time to develop knowledge from your children. Since it’s crucial that as many families with their children as possible attend this meeting, the ML4 Foundation will reimburse travel expenses and lodging for one parent and MLIV child who 1) attend the meeting together and 2) who fully participate in the neuro-clinic at the meeting. (“Fully participate” includes 1) attend your neurological visit with Dr. Misko, 2) give blood samples from the MLIV individual and from MLIV parent carriers and/or siblings. See more details below.)
In 2016, we were honored to have a grant allowing us to extend travel and lodging support to all parents of MLIV patients, without restrictions. Unfortunately, we don’t have this funding available for the 2018 conference and, as such, we need to focus our very limited funding on supporting travel for families who can contribute to this clinical research. We want to make clear, however, that everyone connected to MLIV is earnestly welcome at this meeting. We know that traveling with your child can be a challenge. We encourage all families, with or without children, to attend the meeting, and bring your information, your passion, your warmth and sharing. Every contribution is valuable.
For copy of the IRB protocol or reimbursement questions, please contact Rebecca at firstname.lastname@example.org
For information on the conference and how to book your room at the conference rate, please go to http://ml4.org/ml4-family-conference/
Details of reimbursement:
The ML4 Foundation is pleased to offer conference travel reimbursement in the following situations:
Natural History data collection reimbursement:
Reimbursement for travel and lodging to the ML4 Researcher and Family Conference held in Atlanta, Georgia, June 24-26, 2018 will be made for one (1) parent/primary caregiver and (1) MLIV child. This reimbursement will include travel costs including airfare, as well as hotel charges not to exceed the $139.00/night rate currently offered by the Doubletree Buckhead conference site hotel for Sunday and Monday nights of the conference (international travelers, please discuss options with Rebecca).
Total costs for international travel cannot exceed $2500/family.
Meals at the conference site will be provided by the ML4 Foundation.
Reimbursement will take place after the conference and will depend on participation at the conference in:
- Neurological clinical visit with Dr. Albert Misko or Dr. Florian Eichler
- Blood draw by IRB for biomarker study in lab of Dr. Yulia Grishchuk (blood taken from MLIV child and blood taken from MLIV parent or carrier sibling)
- Videography by Dr. Albert Misko
- Completion of parent-reported data forms (information you provide about your child)
Other components to this clinical visit may be added. If so they will be communicated to the parents well in advance of the conference.
Reimbursements take approximately 3 weeks after the conference to complete.
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!