The Dystroglycanopathies: 2018 Patient and Family Conference

Featuring talks from physicians and researchers, Q&A, laboratory tours, networking, and social gathering.

​

This year's conference is hosted at:

​

Coralville Marriott Hotel & Conference Center
300 E. 9th Street
Coralville, IA  52241

(319) 688-4000

​

For more information, please contact:

Carrie Stephan

Phone: (319) 356-2673
Email: carrie-stephan@uiowa.edu

Million Dollar Bike Ride

The Penn Medicine Orphan Disease Center is hosting its fifth annual Million Dollar Bike Ride to raise money for rare disease research.  Over 25 different disease teams will participate and have their funds matched dollar-for-dollar by Penn!  In prior years, the efforts of “Team Cure CMD” have funded three research grants for different CMD sub-types - click here for details. 

We are looking to make this our biggest fundraising year yet - with additional CMD families, cyclists, and other volunteers joining the effort!  Note: while the team is raising funds for Collagen VI research, this event is not limited to Collagen VI families - all are welcome!

Ways to get involved include:

1. Register to ride with our team! All registration fees go towards our fundraising total!

2. Fundraise on our behalf! Your efforts will help us reach our goal even faster!

3. Ask your local bike club or spin class to join us and support our team! Other fundraising ideas are welcome!

4. Can’t make the ride? Donate to our main page here.

​

Questions?  Contact the team captains:

Susan Lee-Miller (leemillers@comcast.net)

Andy Parks (andy_parks@yahoo.com)

Diane Smith-Hoban (smithhoban@gmail.com)

Support A Cure for John

John has a rare form of Muscular Dystrophy called Collagen VI.

Lucia's, John's favorite restaurant, will be supporting this event from 4-10 pm on Thursday, May 10. They will support both dine-in and carry-out proceeds at 15%. Mention the cause or bring a flyer. 

Or you can support directly https://www.curecmd.org/donate, designate Collagen VI and dedicate to John Gluck

Team Cure CMD at the LA Marathon

Cure CMD is a first time charity partner with the 2018 Los Angeles Marathon & 5K March 17-18. This is a great opportunity to raise funds for CMD research and raise awareness about congenital muscular dystrophy. Sabine de Chastonay is leading the racing team!

Please get in touch with Sabine to learn more about:

• Running the Full Marathon

• Running the Stadium vs. Sea Charity Challenge Half Marathon

• Running the LA BIG 5K

• Volunteering at the event

• Sponsoring t-shirts and sports bottles

​

Email: lamarathon@curecmd.org

​

To sponsor a runner by donating, please visit Team Cure CMD on Crowdrise!

Follow the latest team updates on the Team Cure CMD Marathon Facebook page.

​

Check out Team Member Joe Pinkelman's running interview with @GreenRunnerLA, Marathon Recon: A Mile by Mile Preview of the 2018 LA Marathon - Mile 7

​

Rare Disease Week on Capitol Hill

Join Cure CMD on Capitol Hill during Rare Disease Week from Feb 25 - Mar 1, 2018. Advocate on federal legislative issues that affect you or your loved ones. 

​

If you can't make it out to Washington, D.C., you can still have impact by sharing your story with local and state representatives, and be featured on Cure CMD's website!

​

Megan Meyer's Story

​

Mathea Manley's Story

#ShareYourRare   #RareDisease  #CureCMD