MSUD Family Support Group Invited Back To The Annual Million Dollar Bike Ride!
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.
Here is how you can volunteer and help us continue MSUD research moving forward:
- Join our team of riders in Philadelphia – Last year, we had three families ride in the Philadelphia event on behalf of our team. We need more families to ride with us in Philadelphia on June 8th. The cost to register is just $25 (note, you must raise at least $250 before the event). Fundraising cyclists will receive an official 2018 Million Dollar Bike Ride cycling jersey and a T-shirt.
- Join our team as a “virtual rider” – Gather a group of friends or ride on your own in support of MSUD. You can ask your team members to contribute to the general MSUD fundraising page (see: http://givingpages.upenn.edu/FamilySupportGroup) or you can create your own individual page for contributions. There is no cost for doing either.
- Join our team as just a fundraiser – Don’t own a bike or nervous about riding 13+ miles? It’s ok! You can still support our group by helping us fundraise. Fundraisers can create their own individual pages to help us reach our goal. You can customize your page with stories about you/your loved one’s life with MSUD, pictures, and videos. There is no cost for becoming a fundraising-only participant.
Or, you can make a donation
- If you aren’t interested or don’t have the time to run a fundraiser? You can still support! You can either donate via the MDBR MSUD fundraising page or send a check to the MSUD Treasurer, with your contribution:
Dave Bulcher, MSUD Treasurer
9517 Big Bear Avenue
Powell, Ohio 43065
Note: If you choose to send a check to Dave, please include “2020 MDBR” in the comment line of the check.
Who To Call
|Event Date||Jun 13, 2020|