The MSUD Family Support Group is excited to announce their participation in The Million Dollar Bike Ride, a fundraiser organized by The Penn Medicine Orphan Disease Center. The Million Dollar Bike Ride (MDBR) will be held on Sunday, May 20th, bringing together hundreds of cyclists and volunteers to Philadelphia’s Highland Park in support of rare diseases. In four years of this event, 25+ teams have raised over $6.4 Million to fund research projects for the diseases they represent.

Why is this important?

A recent survey of our members indicated that the vast majority want to see further treatments and potential cures developed for MSUD. 100% of the funds raised by our team during the MDBR will be used towards MSUD-specific research projects. Also, all funds raised by our team are matched by The Penn Medicine Orphan Disease Center to use towards research grants. Upon reaching a goal of $25,000 in donations, matching funds will increase the total amount to be used for research projects of our choice to $50,000!

The MSUD Family Support Group needs your help in reaching our $25,000 goal!

There will be a team of cyclists in Philadelphia to participate in the race on May 20th, but you don’t need to be a cyclist, nor be in Philadelphia to be a part of our team. Here is how to participate:
  1. Join our team of riders in Philadelphia - Our MSUD community will have a handful of riders participating in various lengths of the MDBR. 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. You must register by March 12th (date approximate) to receive a jersey at the event. All fundraising cyclists who register after March 12th will receive their jerseys in the mail.
  2. Join our team as a “virtual rider” - Can’t make it to Philly? You can still participate in the bike ride by riding in your hometown. Gather a group of friends or ride on your own in support of MSUD. Any length ride is acceptable when you are a “virtual rider”. You can ask your team members to contribute to the general MSUD fundraising page (see: or you can create your own own individual page for contributions. There is no cost for doing either.
  3. Join our team as 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. Fundraising is the most important part of this event and we want as many people to help as we can. We have created a general MSUD fundraising page for the MDBR. 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. We encourage the use of email and social media to spread the word about your fundraiser.
  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, please contact This email address is being protected from spambots. You need JavaScript enabled to view it.. If you need help creating your own fundraising page, 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