Saturday, June 08, 2019
Help Us Find Better Treatments And A Cure For MSUD!The MSUD Family Support Group has again been chosen to participate in The Million Dollar Bike Ride, a fundraiser organized by The Penn Medicine Orphan Disease Center. We need volunteers from the MSUD community to be bike riders and fundraisers to help us reach our goal of funding an additional MSUD research project.
Learn more about the MSUD Family Support Group and the Million Dollar Bike Ride by watching this video!
Why should you help?
The MSUD community of families need better treatments and potential cures developed for MSUD. Before we ask others to help us find improved treatments and a cure for MSUD, we need to demonstrate our willingness to help ourselves.
Why The Million Dollar Bike Ride?
The Million Dollar Bike Ride (MDBR) presents a unique opportunity for our group to raise money specifically for MSUD research. In five years of this event, 25+ teams have raised over $8 million to fund research projects for the diseases they represent. Once we reach a threshold, all funds raised by our team will be matched by The Penn Medicine Orphan Disease Center to use towards research grants. By raising $30,000 in donations, matching funds will increase the total amount to be used for research projects of our choice to $60,000!
Didn’t We Do This Last Year?
Yes, with great success! With our donations and Matching Funds, we are funding a MSUD research project at the University of Pennsylvania’s Orphan Disease Center. Dr. Jenny Grieg is evaluating the effectiveness of a muscle directed gene therapy approach to curing MSUD to that of a liver directed approach. We expect a report on her findings by year’s end.
Why Are We Doing This Again?
Finding better treatments and a cure for diseases like MSUD is a journey—not just a single step or research project. Each research project represents a piece of a puzzle. We’re making progress toward solving the puzzle and finding better treatments and a cure for MSUD, but more work is needed.
How Can You Help?
There are a four ways you can participate and help us raise funds:
- 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 $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” – Last year, we had two families ride in their hometowns as a virtual rider. We can do better! 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 to being a fundraising-only participant.
- Make a donation - 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
Are you ready to join our team?