Join us for the first-ever Defeat Duchenne Family Forum and Celebration Dinner on Saturday, May 25 in London, Ontario
This unique event – tailored to families in Canada affected by Duchenne muscular dystrophy – will feature updates about the latest research, clinical trials recruiting in Canada, and more.
**Deadline to book hotel rooms at the discounted rate extended to April 24 – see below to book**
Speakers (click on the speaker’s name for session description and bio)
Dr. Craig Campbell – Pediatric Neurologist , Children’s Hospital – London Health Sciences Centre
Dr. Jerry Mendell – Founder of the Clinical Translational Gene Therapy Program at the Research Institute at Nationwide Children’s Hospital
Topic: DMD Gene Therapy Clinical Trial: Making a difference by gene replacement
Dr. Evgueni (Zhenya) Ivakine – Lab Director, Cohn Lab – Sick Kids Hospital
Topic: Gene therapy 2.0: Interrogation of genome editing applications for the treatment of Duchenne muscular dystrophy
Norah (Nonie) Crossnohere – Research Associate, Ohio State University Wexner Medical Center, PhD candidate – Johns Hopkins Bloomberg School of Public Health
Topic: Treatment preferences for Duchenne muscular dystrophy community: An international study
Maria Mancini – Vice President, Clinical Operations, Catabasis Pharmaceuticals
Topic: PolarisDMD: A Phase 3 Clinical Trial of Edasalonexent in Duchenne Enrolling Patients Globally
Ryan Clarke and Joanne Koskie – Advocacy Solutions
Topic: Introduction to Effective Advocacy: Learn How to Be Heard
Brett Billmeyer – Patient Engagement, PTC Therapeutics
Topic: PTC Therapeutics – Measured by Moments
8:45 a.m. – Registration opens
9:30 a.m. – Opening remarks from Jesse’s Journey (Jeff Preston)
9:45 a.m. – PTC Therapeutics – Measured by Moments (Brett Billmeyer)
10:15 a.m. – Advocacy 101 (Ryan Clarke, Joanne Koskie – Advocacy Solutions)
11:15 a.m. – Treatment preferences for Duchenne muscular dystrophy community: An international study (Norah Crossnohere)
11:45 a.m. – PolarisDMD: A Phase 3 Clinical Trial of Edasalonexent in Duchenne Enrolling Patients Globally (Maria Mancini, Catabasis)
12:00 p.m. – Lunch
1:00 p.m. – Standards of Care in Duchenne (Dr. Craig Campbell)
1:30 p.m. – Genome editing in Duchenne (Dr. Zhenya Ivakine)
2:00 p.m. – DMD Gene Therapy Clinical Trial: Making a difference by gene replacement (Dr. Jerry Mendell)
2:30 p.m. – Break
2:45 p.m. – Researcher panel (Dr. Craig Campbell, Dr. Jerry Mendell, Dr. Zhenya Ivankine)
4:00 p.m. – Advocacy Hub (Ryan Clarke, Joanne Koskie – Advocacy Solutions)
4:15 p.m. – Closing remarks from Jesse’s Journey (Perry Esler)
6:00pm – Celebration Dinner at the Delta London Armouries (details below) begins.
9:00pm (approx.) – Celebration Dinner ends.
Celebration Dinner Location
The Celebration Dinner will take place at the Delta Armouries Hotel (325 Dundas Street, London). See map below for directions. Street parking is free after 6pm and there are pay lots on King Street. The Delta Armouries is a quick 3 minute drive (or 15 minute walk) from The Park Hotel where a block of rooms is available at a special rate (details below).
A special rate of $139/night has been secured for a block of rooms at The Park Hotel London on Friday, May 24 and Saturday, May 25. This beautiful all-suite hotel is located in downtown London and you can choose a room with one king bed, two queen beds, or a fully accessible room with a queen bed, sofa bed, and roll-in shower. Please note that there are only two fully accessible rooms at this hotel – if you are not able to secure a fully accessible room, please contact us and we will help you source a room at another hotel.
Click here to book your room! Please note that the special rate of $139/night is available until April 24, 2019 or until the block sells out. Space is limited.
Registration is free for a group of up to 4 people. For each additional person in your group, there is a $25 fee to help cover the costs of the day. Please contact Seana at email@example.com or 519-645-8855 for more information.
Register using the form below. Space is limited, so reserve your spot today!
Select “Family Forum Only” if you only plan to join us for the forum sessions
Select “Family Forum & Dinner if you are able to join us for both the forum sessions and the Celebration Dinner.