Events Calendar

Download as iCal file
The Million Dollar Bike Ride
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:
  1. 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.
  2. 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: or you can create your own individual page for contributions. There is no cost for doing either.
  3. 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.
  4. 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?
Go to: to sign up. All members who join the team either as a rider or fundraiser will receive guidance and ideas on promoting their fundraiser, what to add to their pages, soliciting donations, etc. If you have questions about the MDBR, please visit If you have questions specific to the MSUD team or need help creating your own fundraising page, please contact This email address is being protected from spambots. You need JavaScript enabled to view it..

Melvin Carruth

This letter is a tribute to my brother Melvin Carruth! We believe he is one of the oldest living African Americans with Maple Syrup Urine Disease.

Read More

NBS-MSUD Connect: Your One-Stop Shop For MSUD Resources

NBS-MSUD Connect was launched as part of the Newborn Screening Connect patient registry (NBS Connect) in 2013 through a partnership between the Department of Human Genetics at Emory University, the Maple Syrup Urine Disease (MSUD) Family Support Group and other key stakeholders.

Read More

Cambrooke Therapeutics

Cambrooke Therapeutics continues to expand its line of delicious and nutritious low protein foods to help improve the lives of individuals with Inborn Errors of Metabolism such as MSUD.

Read More

Updates To Nutrition Management Guidelines

The Nutrition Management Guideline for MSUD was first published in 2014. Since that time, there have been reports of new research and experiences that have prompted updates of the guideline.

Read More

Emory Metabolic Camp 2018 Announcement

Join us June 18-23, 2018 for the 24th Annual Metabolic Camp at Emory University in Atlanta, GA!

Read More

From The Chairman’s Desk

As I sit here reflecting on how much the care and treatment of MSUD has changed over the years, my mind goes back to 1978 when our son Keith was born.

Read More

MSUD Advocacy Report

Medical Nutrition Equity Act

The Medical Nutrition Equity Act (MNEA) would require all private insurance plans (state regulated or self-insured/self-funded) and federal health programs, including Children’s Health Insurance Program, Tricare, Medicaid, Medicare, and Federal Employee Health Benefit Plans, to provide coverage for formula and low-protein foods for all children and adults with MSUD.

Read More

The MSUD Family Support Group Is Excited To Announce Their Participation In The Million Dollar Bike Ride

The MSUD Family Support Group is excited to announce their participation in The Million Dollar Bike Ride

Read More

19th Biennial MSUD Symposium

I can’t believe that almost two years have passed and it is time for another MSUD Symposium! I am especially excited about this conference because I’ve built in extra time for social interaction.

Read More

Change the lives

of MSUD adults and children

Subscribe to our mailing list

Signup To Our Newsletter Signup with your email address to receive news and updates