Center for Duchenne Muscular Dystrophy at UCLA

Teen and Adult social happening at 4:30 PST Today. Join/RSVP at link.

Continuing our CDMD Neuromuscular Team Appreciation posts with our dedicated and compassionate Orthotist Keith E. Vinnecour, C.P.O. (E). Keith is an Orthotist with more than 40 years of experience with neuromuscular diseases. He is a retired outside vendor, who has been a member of the clinic since the beginning. Keith, working in conjunction with the Physical Therapist, performs an exam along with doing gait analysis for each patient and assists Dr. Shieh in writing prescri...ptions and providing supporting Orthotic notes to ensure that the most up to date and effective devices are being prescribed and provided. He also sees the devises after they have been provided to ensure they are optimum for each patient, fitting comfortably and functioning as originally requested. Keith works with the families to educate them on the proper usage of the devices, problem solving advice and assistance as to when orthoses need to be repaired or replaced, due to wear or growth. And finally, Keith tries to connect the families that do not have previous providers with providers who have advanced knowledge and expertise with Orthoses for patients with neuromuscular diseases and are geographically convenient to where the patients are living. See more

Reminder! Join the PPMD Adult Advisory Committee (PAAC) and Cure SMA Adult Advisory Council for a virtual holiday mixer TODAY 4:30 PST ugly sweaters encouraged but not required! Teens and adults living with Duchenne, Becker, and SMA ages 14+ are welcome. RSVP HERE:https://parentprojectmd-org.zoom.us//tJIoc-Gopj8rG9HCgalEF

Thank you Team Joseph, DFAP, Walking Strong, and Jett Foundation for your robust DMD patient and family assistance programs. There is so much need out there and we are grateful to these organizations for relieving some of the burden of living with Duchenne. DMD families please fill out the survey here-these surveys help inform budgets and important decisions. From Marissa Penrod, Founder of Team Joseph and The Duchenne Family Assistance program: Duchenne families and friends -- please take this super quick survey. https://forms.gle/YL9h5QzmUtPRvraq6 We want to understand what you need and be able to help our community in the biggest way. (and....you could win a $100 Amazon gift card!). Please share with other Duchenne families

Please join this webinar tomorrow with Pat Furlong on the Covid -19 vaccine and Duchenne.

https://newsroom.ucla.edu//compound-stimulates-muscle-cell

Continuing with our gratitude for our CDMD Neuromuscular Team. Todays highlight goes to our research nurse specialist Beth McGee. Beth is a newer addition to the team and fills another important piece to solving the Duchenne puzzle. She was introduced to Duchenne patients in the CTRC at UCLA where she helped some of the first patients receive the exon skipping drugs in clinical trial. Thank you for your hard work Beth! Elisabeth "Beth" McGee, MSN, is a pediatric clinical nur...se specialist. She is the research nurse for the California Center for Rare Diseases at UCLA. Beth has more than 13 years of experience with pediatrics, with almost half of that time directly involved with clinical trials. She assisted with some of the first Duchenne exon skipping trials at UCLA. She currently assists with muscular dystrophy trials conducted by Dr Nelson and Dr Miceli. She is also responsible for organizing longitudinal patient information in our secure database. Beth also coordinates family member genetic testing. In addition to serving CDMD clinic, Beth works for all rare disease patients at UCLA. She helps identify and consent patients to applicable trials and research opportunities. See more

There's still time to register for tomorrow's Tween Social, hosted by Pat Moeshen and the PAAC! Geared toward boys with Duchenne/Becker ages 9-13, these virtual gatherings offer a time to hang out, socialize, and have fun! Join this Tuesday, October 20th at 7pm EST or Tuesday October 27th at 9pm EST. Register in advance at the links below. Tuesday, 10/20: [https://parentprojectmd-org.zoom.us/.../tJYsf...](https://parentprojectmd-org.zoom.us/.../tJYsf...)... Tuesday, 10/27: [https://parentprojectmd-org.zoom.us/.../tJYpfuyhqT8tGtUyd...](https://parentprojectmd-org.zoom.us/.../tJYpfuyhqT8tGtUyd...)

https://nationalorganizationforraredisorders.cmail20.com//

Attention California families-please take this PPMD survey http://join.parentprojectmd.org/site/MessageViewer

A few spaces left and open to all UCLA patients

https://www.facebook.com/events/756478444920914/

Great resource for the DMD community https://www.duchenne.com/

https://mailchi.mp//walking-strong-to-offer-duchenne-life-

On behalf of all of the CDMD Drs, Scientists, and patients we serve THANK YOU - THANK YOU - THANK YOU - to Walking Strong Foundation for this incredible gift. $75,000 to support the CDMD at UCLA!!! From our house to yours, we cannot thank you enough for your generous and continued support.

Nominate your favorite Rare Disease Advocate by September 8th! More info here: https://rareadvocates.org/rarevoice-awards/nominate/