Cure CMD has great news!
Earlier this year, we shared about the Million Dollar Bike Ride, an annual event held at PENN Orphan Disease Center (ODC) that raises money for rare disease research. Individuals from across the country joined Team Cure CMD to support, cheer, donate, and/or ride in the 13-, 34-, or 72-mile ride. At least $20,000 had to be raised in order for the team to ride, and up to $50,000 would be matched.
We are so excited to share with you that the 45 members of Team Cure CMD raised the maximum amount, for a total of $100,000 in research funds for COL6 CMD!
"The Cure CMD Team works tirelessly throughout the year to ensure we make the most of the matching opportunity," says Cure CMD Board Member Eunice Kim. "So when the team was only a few thousand dollars away from the $50,000 maximum, Cure CMD donated the remaining $4,000 -- thereby doubling research funds."
The ODC guarantees that no overhead will be taken out of the total. Team Coordinator Diane Smith-Hoban reports that the event was a success on all accounts. “It was a great day filled with love and excitement (and just a little bit of rain). Divia and Naya Parks [among others] cheered for [the team] as they crossed the finish line!”The next step in the process is that the ODC will distribute a request for pilot grant applications to the international scientific community. Cure CMD will be sure to keep the community updated as the grant process continues.
We are honored to be part of a community that is so committed and generous with their time and resources. Thank you for sharing the mission to advance CMD research!
Want to get involved for 2019? Contact Susan, Diane or Andy!
Parents of children and young adults with the rare disease Congenital Muscular Dystrophy (CMD), Susan Lee-Miller, Andy Parks, and Diane Smith-Hoban, spent the last year preparing for the 5th Annual Million Dollar Bike Ride (MDBR), held in Philadelphia on May 20, 2018.
The annual bike ride, hosted by the Penn Medicine Orphan Disease Center (ODC), is a 13-, 34-, or 72-mile route through the Greater Philadelphia region, and has raised more than $6.4 million for rare disease research since its inception in 2014. Lee-Miller, Parks, and Smith-Hoban each have a child affected by Collagen-VI Congenital Muscular Dystrophy (CMD), so every year, they ride with Team Cure CMD. Their goal is to raise $100,000 for Collagen VI research annually. You can support next year's team through a donation to Cure CMD.
Each rare disease team, including Team Cure CMD, must raise at least $20,000 to earn ODC matching dollars up to $50,000. The ODC ensures that all dollars raised go directly to the pilot grants, with no overhead costs. This unique opportunity to fundraise helps build awareness for causes that many people have never heard of. There is no limit to the size of a team, and Team Cure CMD members can be “virtual,” meaning they do not have to be present on ride day to join the fundraising effort.
On the day of the ride, Team Cure CMD cyclists, affected individuals, and their families and supporters gathered at 31st St. and Chestnut near the University of Pennsylvania campus. While cyclists completed their routes, non-riders enjoyed food and drinks donated by local vendors, indoor putt-putt and other games, video displays, and community-building. Rare disease team members connect, share information, and become friends. Parks’ wife, Jessie, says “The strength, inspiration, and hope that comes along with being around other people in the rare disease community is priceless.”
Smith-Hoban from Lafayette Hill, PA, rides with family and friends and says that the 13-mile ride is beautiful and relatively easy. “This route goes through Fairmount Park and shows off iconic Philadelphia scenes such as Boathouse Row and other well-known sites.”
Lee-Miller, hailing from Doylestown, PA, rides the tougher 34-mile while her husband, Scott completes the intense 72-mile trek. Their 20-year-old son Liam, who is in his second year at Temple University, hangs out with Smith-Hoban’s son, Luke, a 22-year-old recent Penn graduate. The two young men both live with CMD and have been good friends and wheelchair hockey teammates for more than 10 years.
Parks from Fairfax, VA, also rides the 72 miles through the greater Philadelphia area. His wife Jessie brings their young daughters Naya and Divia to provide moral support for the team. This will be their second year participating in the event, which they learned about when they saw a post in a CMD support group they had joined when Divia was first diagnosed. “We have been learning a lot. With each event we get ourselves involved in, the disease doesn’t feel as intimidating and we are not as helpless in our fight against it.”
Cure CMD was founded in 2008 to advance research for treatments and a cure for congenital muscular dystrophy (CMD) and, through engagement and support of the community, to improve the lives of those living with CMD. To date, we have funded over $2 million in research, launched two clinical trials, and are the primary source of news and information about CMD research and care. We have achieved this success through close collaboration with researchers, clinicians, dedicated volunteers, generous donors and the affected individuals and families we serve.
The Penn Medicine Orphan Disease Center (ODC)
The Penn Medicine Orphan Disease Center (ODC) was established to promote the development of therapies across a broad range of orphan diseases. Each of these diseases by definition is rare but collectively represents a substantial health care burden. Most orphan diseases manifest in children with premature mortality and/or significant disability and little is available in terms of treatments. In order to assemble a critical mass of intellectual and patient resources for any one disease, the ODC will reach beyond the borders of Penn and promote inter‐institutional collaborations/partnerships. The ODC will develop transformative therapies using platform technologies that can be deployed across multiple rare diseases. We will emphasize disorders with substantial unmet need independent of their incidence and will strive to assure access to patients of all populations.
All funds raised by Disease Teams through pledges are used by the ODC to expand the scope and depth of the MDBR pilot grant program. Following the event, a Request for Application (RFA) will be broadly distributed to the international scientific community requesting pilot grant applications to study diseases for which designated money has been raised. The ODC secures philanthropic and corporate donations that will be used to match dollar‐for‐dollar money raised by the cycling participants. Scientific leadership of the ODC and its extramural advisors will review the applications and make awards to those of the highest scientific merit which address the specific topics outlined in the RFA. The ODC will disperse the money to grantees and manage progress of the science and spending on the award.
For questions regarding participation in the MDBR as a cyclist, volunteer or sponsor, or regarding the pilot grant program, please contact Samantha Charleston at firstname.lastname@example.org or (215) 573-6822.