Updated: Oct 28, 2020
Meet Molly Wagner, high school student from Florida with CMD. Molly was tasked with creating a research project that not only accomplished the requirements of the project, but also personally related to her. Since she has CMD, Molly decided to investigate a potential correlation between scoliosis severity and breathing function. Molly hypothesized that, since those with CMD often have both scoliosis and weaker lung function, there would be a strong correlation between the two symptoms. Cure CMD staff members saw her request for information on Facebook, and offered to help her create a research survey to solicit responses from the greater CMD community. Molly received 77 survey submissions, a really good data set for her project. Molly then graphed the data and realized most of the points didn't match up very well, or at all. She was surprised at the results but thought this might be a result of leaving out several variables including age, type of CMD, and pre/post surgery. Currently, Molly is working out what kind of function would be the best fit for the spinal curvature and FVC% graphs. She will then compare the two trends to determine whether there is any correlation between these two variables. Molly's project is a great example of how important research is for diseases like CMD. What seemed like a clear relationship ended up having no actual evidence of correlation. This type of information helps researchers move closer to treatments for CMD.Research is a critical piece of what Cure CMD does to support the CMD community but it doesn't happen without your participation and support. To ensure meaningful research continues, we need three things:
Data. Because CMD is so rare, researchers need everyone to participate so they can create statistically significant findings. Our registry, the CMDIR, is a way to provide data, and is why we need you to register!
Funding. Cure CMD was are able to award $300,000 in research grants this year because of generous donors and fundraisers in the CMD Community. Donations of any amount truly make a difference in moving us closer to clinical trials. Learn more about opportunities to fund Cure CMD's programs.
Advocacy. Community members who participate in legislative advocacy ensure that rare diseases like CMD are seen, heard and supported through federal funding and agencies such as the NIH, the FDA and more. Learn more about the CMD Advocacy Team.
You don't have to create your own project to advance our mission -- you can be part of the many opportunities that are leading the way toward treatments and cures.