by: Parent Project Muscular Dystrophy
End Duchenne Tour 2020: Virtual Tour Stop in Portland, OR
On Saturday, September 12, we spent the morning with the Duchenne community in Portland, Oregon and the surrounding region for another End Duchenne [Remote] Tour stop. Although we missed convening the community in person, we were happy to connect virtually and share updates around care, research, genetics, and how to get involved with PPMD. Despite the wildfires burning in the pacific northwest, we were joined by several families, industry partners, and many local healthcare providers.
We want to thank the neuromuscular team from Oregon Health & Science University and Shriners Hospital for Children for joining us in addition to Dr. Aaron Olson from Seattle Children’s Hospital, one of PPMD’s Certified Duchenne Care Centers. PPMD’s Pat Furlong moderated an interactive care panel with these key team members and provided helpful guidance and support to families.
Recording
- Welcome / Who is PPMD? – Timestamp: 0:00
- Get Involved – Timestamp: 24:44
- Genetics, The Duchenne Registry and Your Family – Timestamp: 33:25
- Duchenne Expert Panel: Care – Timestamp: 1:12:44
- Neuromuscular Care – Timestamp: 1:13:07
- Pulmonology – Timestamp: 1:23:05
- Endocrinology – Timestamp: 1:30:21
- Physical Therapy – Timestamp: 1:35:24
- Cardiology – Timestamp: 1:44:44
- Sponsor Panel: Research – Timestamp: 2:30:53
Snapshot of the Day
Our day began with PPMD’s CEO Pat Furlong providing historical background and current key updates on PPMD’s research, advocacy, and care programs.
Download PDF >JOIN THE FIGHT TO END DUCHENNE
We were also joined by Lynn Bartels, parent and Connect Coordinator of PPMD’s Connect Pacific Northwest. Lynn spoke about getting involved locally, and is looking forward to gathering families once it is safe to do so. To find ways to get involved locally, you can join the Facebook Group or email Lynn directly.
There is also an opportunity to participate in the Race to End Duchenne Virtual Race Series October 17 – November 1. You can choose from 5K, 10K, and 15K distances, and use the RaceJoy app to track your routes. Registration is officially open, and you can contact Nicole Herring with any questions!
Download PDF >The Duchenne Registry
We were joined by PPMD’s Ann Martin, MS, CGC – the director of The Duchenne Registry and one of PPMD’s Genetic Counselors. Ann provided background on the genetic implications of Duchenne, as well as the importance of genetic testing and the valuable ways you can contribute to The Duchenne Registry.
Download PDF >Interactive Care Panel
The final portion of our virtual tour stop was an interactive care panel, moderated by Pat. We want to thank Erika Finanger, MD, OHSU; Meganne Leach, MSN, PPCNP-BC, OHSU; Courtney Goshue, DO, OHSU; Lindsey Nicol, MD, OHSU; Kirsten Zilke, PT, Shriners; and Aaron Olson, MD, Seattle Children’s.
- Finanger and Meganne spoke about both the neuromuscular clinic at OHSU/Shriner’s and their clinical research program, including active and enrolling clinical trials
- Goshue spoke to the role of a neuromuscular pulmonologist, and what to expect at your visit
- Nicol presented the importance of an endocrinologist to manage issues regarding delayed puberty, bone health, adrenal insufficiency, and weight management
- Kristen explained the goals of physical rehabilitation planning in Duchenne to create individualized care plans with anticipating future needs to avoid surprises
- Olson discussed cardiac involvement in Duchenne, and the importance of regular screening and early intervention for both people living with Duchenne in addition to female carriers
Partner Presentations
Before closing the meeting, Pat invited our partners to participate in a panel discussion. We want to thank representatives from PTC, Sarepta, Santhera, Pfizer, and Italfarmaco for spending their morning with us and answering questions from the community.
We are also so thankful to our partners that supported this Tour stop and our efforts this year. Please click here to view information regarding current sponsor trials and a research overview, and submit questions at any time.
NEXT UP
PPMD’s next End Duchenne [Remote] Tour stop will take place on October 17 and target St. Louis, MO and feature the Children’s Mercy Kansas City and University of Missouri teams to allow for pediatric and adult care breakouts.
The final End Duchenne [Remote] Tour stop in 2020 will be in Miami, FL and will include bilingual presentations for Spanish-speaking families. This virtual meeting will take place on Saturday, December 5. Be sure to sign up for PPMD’s Newsletter and follow PPMD’s Facebook page to be notified when registration is open.
Though nothing is ‘normal’ about our new normal, we so appreciate the time we spend with you and please know we are here to support you however we can.
