THE 2020 MILLION DOLLAR BIKE RIDE IS NOW VIRTUAL!
This year the ODC has announced that the bike ride will be an all-virtual event.
Here they explain what this means for cyclists:
- Although we won’t be seeing you in June for a 13, 34, or 72-mile ride, we ask and encourage you to ride on your own (or safely socially-distanced from your cycling buddy), between now and June 13th, and document your progress! We are looking into various cycling apps that will allow for progress tracking and sharing, allowing you to cycle at your leisure over the course of the next few weeks (or all at once!) Regardless of whether or not you choose to use the app that we suggest (or one of your own) we hope you will participate leading up to and including June 13th to show your commitment and spirit for the MDBR.
- Have a stationary bike at home? Cover your miles from the comfort of your home, and share your status and progress with us along the way!
- Whether you’re on your stationary bike or on the road, we will have special hashtags for sharing on social media, and ask that you post your personal or team cycling updates throughout the next several weeks up to and including June 13th. We will be sharing, “liking” and re-posting your updates on our social media channels and website, as well.
- As always, ALL registration dollars will be contributed to each team’s grant fund, to help supplement your fundraising efforts. With that said, if you no longer wish to participate in the bike ride given the circumstances, please reply to me directly to process a refund. However, we encourage you to consider your registration fee as a (much needed) donation to your team’s research grant.
The MSUD Board of Directors and I appeal to everyone in the MSUD community to make an effort to get involved in this year’s bike ride and help us raise much needed funds for research to find a cure and improved treatments for MSUD. Your participation and donations are greatly appreciated. We are a small group but together we can make a difference.
Please join us virtually and make this year’s event our most successful.
Our MSUD community needs improved treatments and hopefully a cure for MSUD, and raising funds to promote research directed towards these goals is essential. Our participation in the 2018 and 2019 Million Dollar Bike Rides sponsored by the University of Pennsylvania’s Orphan Disease Center (ODC) have taken us closer to this goal, and we are thrilled that the MSUD Family Support Group has been invited to participate in the 2020 ride! This year’s event is scheduled for June 13th, in Philadelphia, PA. Greater participation will increase our reach, so spread the word and share this video:
We had very successful campaigns in 2019 and 2018. With the proceeds of these campaigns we have been able to fund three research projects:
- With the proceeds of the 2018 MDBR, the first project was conducted at the Orphan Disease Center at the University of Pennsylvania. The goal of the project was to develop a muscle directed gene therapy approach for MSUD and compare its effectiveness with liver-directed approaches. This project is completed and we have invited the project’s principle investigator to present her findings at this year’s MSUD Family Support Group symposium, to be held in Columbus, Ohio in June.
- With the proceeds of the 2019 MDBR, two additional projects are being funded. The first will investigate if we can improve neurologic and psychiatric outcomes in MSUD by using studies in a new mouse model. The second will investigate a novel approach for identification of therapeutic leads to the Maple Syrup Urine Disease.
Each research project is step towards the goals of finding improved treatments and a cure for MSUD, but we are also mindful that achieving this goal is going to be a journey. Therefore, we are excited to again participate in the ODC’s Million Dollar Bike Ride so that we can continue to explore ways in which treatment can be improved and search for a cure. Volunteers are needed to help keep these research projects going!
In 2019, three teams got on their bicycles to raise funds for MSUD research. One team in Philadelphia (right) joined over 400 riders in the main event. Two other teams rode in their hometown of Manitoba and Ontario in Canada. These teams were joined by other fundraisers across the United States and Canada.
|Event Date||Jun 13, 2020|