On February 25, a new information session was held aimed at families and affected by…
Last July, Noelia Foundation attended the 2019 Congenital Muscle Disease Scientific & Family Conference organized in Chicago by Cure CMD, an event that brought together researchers from around the world to share their experience on these congenital diseases.
Once again, Noelia Foundation was present at this unique reference event to learn first-hand about the progress that is being made, and to make sure our families are up to date with the latest trends in therapy and patient management.
We also had the privilege ofpresenting our first poster communication at a conference meeting of the highest social and scientific level, in the field of congenital muscular dystrophies. The poster showcased our work and achievements so far, as well as the projects that, with everyone’s help, are currently being funded in our fight against Col6-CMD.
Finally, we had the opportunity to personally meet with several worldwide experts on Collagen-VI CMD such as Dr. C. Bönnemann, Dr. V. Bolduc, Dr. R. Foley and Dr. Russell, among others, who shared with us the current status of the research projects currently ongoing at the NINDS (National Institute of Neurological Disorders and Stroke, part of the National Institutes of Health, in Washington), that are co-funded by the Noelia Foundation.
We came back full of energy, and with very encouraging news for Collagen VI patients. From Noelia Foundation we want to wholeheartedly thank Cure CMD, particularly Gustavo Dziewczapolski and Rachel Alvarez, for organizing this wonderful venue, bringing together experts to share their knowledge, and facilitating that therapies for these diseases move ahead. Thank you all!