Duchenne and Becker Muscular Dystrophy is a genetic condition characterized by progressive muscle weakness and atrophy which primarily affects the skeletal and heart muscles.
Check out this story about Terry Horgan, a 24 year old boy, living with muscular dystrophy. Terry’s brother has founded “Cure Rare Disease”, a non profit organization which is currently exploring a treatment for muscular dystrophy. This new gene editing technique is called CRISPR. Watch the video within the provided link to learn more!
I just wanted to say hi and introduce myself. My name is Kim, and I joined because of a close and personal friend of mine, Ryan Ballou. He and his father Ty started a charity called Ballou Skies to help raise awareness and funds to help fund research to prolong the lives of those with Duchenne Muscular Dystrophy. I'm interested to hear how you guys are coping with this condition and what are your hopes, dreams, aspirations and how we can get the word out about the need for research. Please check out the Ballou Skies homepage if you have time and let me know what you think. I would love to hear from you. Thanks.
CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.
Enrolling is easy.
After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.
Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.
Visit sanfordresearch.org/CoRDS to enroll.
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I'm joining the group because I'm involved with a local charity called Ballou Skies which was started by Ty Ballou and his quest to raise awareness of his son Ryan's condition of...
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Created by shannon.ashoori | Last updated 23 Jun 2020, 10:32 PM
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