Innovations in Care
Outside Organization Programs & Information
As part of our support to the neuromuscular disease community, MDA posts information provided by outside companies and organizations that are educational or research in nature.
The information, programs and resources listed below are not developed, sponsored, funded or endorsed by MDA. The companies and organizations posting below are responsible for all content and information provided. Any questions or queries, please email us at ResourceCenter@mdausa.org. Posting may not be for fundraising or commercial purposes.
Navigating Duchenne - A Free Educational Program on Duchenne Muscular Dystrophy
Navigating Duchene is a regional educational program that addresses a variety of topics to help patients and families navigate the journey of Duchenne Muscular Dystrophy. Navigating Duchenne is a free program that is open to the Duchenne community. By covering various topics in the Duchenne journey, Navigating Duchenne hopes to empower, support and connect members of the community. In this continuing series, these are the next events:
- "Cooking with Sandra for the Holidays" presented by Sandra Arevalo-Valencia, MPH, RDN, CDN, CDE, CLC, FADA
December 12, 2020 at 9:00 AM PST/12:00 PM EST
Link to Event: https://ptcbio.zoom.us/j/97325329383?pwd=TEYyMERtd1d0MXlyNjhhMXV4OFUvUT09
For questions and to RSVP, please email Malisa Rust at firstname.lastname@example.org.
Duchenne Quality of Life Survey Study
DeltaQuest Foundation is seeking participants for an important study about the impact of Duchenne Muscular Dystrophy on the family. DeltaQuest Is a not-for-profit research organization whose mission is to facilitate and implement innovative quality-of-life research. DeltaQuest Is seeking DMD caregivers, patients, and siblings ages 8 through adulthood. Participants will receive a generous payment for completing each survey.
For more information on this survey, please email Dr. Carolyn Schwartz at email@example.com. When emailing Dr. Schwartz, please include the following: Your name, how you heard about the study, and name(s) and age(s) of people with DMD in your household.
BIO is conducting a survey on the Impacts on COVID-Related Clinical Trial Alternations on Clinical Trial Participants.
This survey is being conducted by the Biotechnology Innovation Organization. We are hoping to hear from patients about how COVID-19 may have impacted or is currently impacting patients’ abilities to participate in clinical trials. Additionally, if trials have been altered, we are trying to better understand if the changes that have been implemented have reduced or added to the burden for patients participating in clinical trials. If you have any questions about this survey please contact Danielle Friend at firstname.lastname@example.org. We appreciate your participation! The survey results will be analyzed on a rolling bases beginning August 31, 2020. The questions outlined below apply only to experimental treatment trials, NOT natural history studies.
LAUNCH OF iMaGineMyMG
Background: For MG Awareness Month in partnership with patients we are excited to launch iMaGineMyMG. iMagineMyMG is a place for people living with and impacted by MG to listen, learn and connect with each other. Inspired and designed by people living with MG for people living with MG, iMaGineMyMG is a resource in learning more about MG. The site is filled with new ways to connect with others and share experiences, resources and information on life with MG. It includes opportunities to participate in monthly surveys, post videos and pictures and connect with others in the community. It also includes resources for individuals to talk with their doctors on improving their quality of life and the day to day experience of life with MG. We’ll be updating the site on a regular basis.
Exercise and CMT
The Charcot-Marie-Tooth Association in collaboration with Therapies for Inherited Neuropathies created a series of physical therapy centered videos to help CMT patients in the areas of flexibility, balance, strengthening, endurance and function.
No Charge Genetic Testing for Patients Suspected of Having SMA
The SMA Identified Program offers no charge genetic testing for patients suspected of having or clinically diagnosed with SMA. The link to the program is below:
Take on Thymidine Kinase 2 deficiency (TK2d)
Whether you're living with an MDS, have been diagnosed with TK2d or are a parent, caregiver, or healthcare professional (HCP) who wants to learn more about MDS and TK2d, visit www.tk2d.com for more information. We can all take on TK2d together.
Gene Therapy Patient Education
The American Society of Gene and Cell Therapy has a variety of educational resources available on their website. Visit https://www.asgct.org/education to learn more about the basics of gene therapy, the clinical trial process and the potential of gene therapy for specific diseases including SMA and MTM.