On Wednesday, July 23rd, 2014 The Bethanys Hope Foundation in support of the Bethanys Hope Research Laboratory, are proud to announce the kickoff of a new fundraising campaign supporting the goal of putting an end to Metachromatic Leukodystrophy once and for all.
“Be on the Team ” is a campaign designed to create a source of funding of up to one million dollars, for the sole purpose of funding up to 5 MLD Clinical Trials and the associated costs.”
The MLD Clinical Trials, when approved, will take place in London Ontario at the Children’s Hospital at London Health Sciences Centre, although patients participating may come from all over the globe.
As of 2014, we do not know the exact actual costs of an MLD Clinical Trial, and it is assumed that for each patient participating in the MLD Clinical Trial, the costs will vary.
The difference in the costs for each patient will depend on many factors including (but not limited to) stage of the disease, distance traveled, follow up visits required, family members attending, other supports, etc.
At this time, we are planning on a financial commitment of between $200,000 and $250,000 per patient, as well as additional funds to help cover the startup costs associated with an MLD Clinical Trial.
It is with this goal in mind that we launched the “Be on the Team for 2018” campaign, and are counting on the generous support from ‘Team Members’ all over the world.
We are so excited to continue our TEAM campaign, and create the Team that will be there to support the MLD warriors in their fight with this terrible and devastating disease.”
Dave & Lindey McIntyre