PPMD was very happy to have the opportunity to meet the team from Children’s Hospital of Alabama and all of the families that came out to our End Duchenne Tour stop on June 6 in the Birmingham, AL area. More than 60 people came together to provide information and resources for everyone in the area.
Join the Fight
Consider joining our Race to End Duchenne team in January at the Walt Disney World Marathon Weekend! This magical weekend features four days of races through the Disney theme parks, family fun, and tons of memories to be made. For more information or to register visit the Race to End Duchenne website or contact Nicole Herring at email@example.com.
The Decode Duchenne program, offering free genetic testing and counseling for people with Duchenne, is now available for carriers – learn more!
PPMD & Community Speakers
Kathi Kinnett, MSN, APRN spoke about PPMD’s core tenants and how to get involved – including PPMD’s efforts in Care, Advocacy, Research, and Community Engagement. (Download presentation slides)
We were then joined by Jen Shumsky from Little Hercules and Scott Griffin from Hope for Gabe who each spoke about the efforts of their respective organizations and their efforts in patient assistance, legislation, and research.
Jen Ely, CGC, PPMD, gave an excellent overview of the genetics of Duchenne. She also spoke about Decode Duchenne and the importance of The Duchenne Registry. If you have not registered, please do. If you have registered, please update your information! (Download presentation slides)
Dr. Brad Troxler, pulmonologist, UAB, explained the care guidelines for pulmonary care, including the need for pulmonary function testing, assisting cough to prevent pneumonia, and assisting breathing to optimize oxygenation while asleep and sometimes when awake. Your mask has to fit and be comfortable for patients to wear it!
Dr. Drew Davis, PM&R, discussed the importance of the rehabilitation team, stretching, and bracing. Good positioning and support, and staying safe to avoid falls, are all important. (Download presentation slides)
Ashley Nichols, MD and Liz Gunter, LPC both discussed the importance of psychosocial care in Duchenne. There is an increased risk of ADHD, OCD, and depression – these, and other diagnoses, should be evaluated at every visit and treated as needed. In addition, caring for the psychosocial health of the caregiver is extremely important to keeping families healthy. (Download presentation slides)
Claudia Senesac, PT, PhD from U FL discussed the importance of stretching, exercise and bracing, as well as gave a review of equipment needs across the lifespan. Peggy Sedlacek, PT, UAB, discussed the amazing local resources available for Alabama families. (Download presentation slides)
Research & Industry Updates
Alison Barnard, PhD, University of Florida, joined us and gave a broad overview of Duchenne research. (Download presentation slides)
This overview was followed by:
- Mitzi Tucker, Sarepta Therapeutics
- Jodi Wolff, Santhera (Download presentation slides)
- Allie Freitas, PTC Therapeutics
- Roger Kobes, Pfizer/Bamboo
- Jeffery Rudy, Capricor (Download presentation slides)
Race to End Duchenne
Consider joining our Race to End Duchenne team in January at the Walt Disney World Marathon Weekend! This magical weekend features four days of races through the Disney theme parks, family fun, and tons of memories to be made. This is a great opportunity to raise funds and awareness while meeting other families. We’ll have a team celebration dinner featuring Disney characters, breakfast for runners at our finish line tent following all four races, discounted hotel room block, and discounted park tickets. For more information or to register visit the Race to End Duchenne website or contact Nicole Herring at firstname.lastname@example.org.
Thank you to our industry partners for helping make today possible. A huge thank you to Shelly Lauderdale, RN Coordinator and the Children’s Alabama Team for making this End Duchenne Tour stop such an easy and fun event.
We hope to see everyone at the PPMD Annual Conference June 28-July 1 in sunny Scottsdale, AZ, and will continue our End Duchenne Tours in the fall!
In an effort to reach every single family facing a Duchenne diagnosis in the U.S., PPMD has launched a multi-year community experience called the End Duchenne Tour. Combining each of the pillars that make up PPMD’s mission, the End Duchenne Tour brings updates on research, advocacy, and care to cities across the country, featuring a roster of leading experts in the Duchenne space.
You have told us what topics are the most important to you and we have listened, using your feedback to inform our robust agenda at each tour stop. This is also an opportunity to connect with local families and, when possible, explore your area Certified Duchenne Care Center.
As always, each meeting is free with breakfast and lunch provided. Kids are also welcome to attend and participate in PPMD’s Kids Track.
Upcoming 2018 Schedule*:
- Billings, MT – Remote
- Dallas, TX – October 13, 2018
- San Francisco Bay Area, CA – November 3, 2018
- Cincinnati, OH – November 17, 2018
PPMD will also be holding our Annual Conference in Scottsdale, AZ (June 28 – July 1).
*Registration typically opens 1-2 months prior to each event. Visit EndDuchenne.org/Tour for more details and make sure you are signed up to receive emails from PPMD to be notified when registration opens.