End Duchenne [Remote] Tour: New Orleans, LA
On Saturday, March 6, we spent the morning with the Duchenne community in New Orleans, LA and the surrounding region. Although we were unable to meet in person, we were thrilled to bring the local community together to discuss updates around care, research, and getting involved virtually. We were joined by 11 families, 4 healthcare professionals from nearby neuromuscular centers, and 4 industry partners.
Join the Fight to End Duchenne
Please contact Erin Bullers or Rachel Poysky, parents and PPMD Connect Coordinators, to ask about ways to get involved with the local PPMD community in South Texas and surrounding region. Abbie Killian also spoke about PPMD’s new Sibs Connect group – to learn how siblings can get involved, join this Facebook group or fill out the interest survey on the PPMD website.
Rachel Poysky also spoke about her experience hosting a virtual, do-it-yourself, fundraising event to help support PPMD’s mission to keep moving the needle forward in Duchenne research and care. For more information, please visit our website or email PPMD’s Erin Dresnick.
Comprehensive Care Panel
Thank you to Duchenne experts Dr. Jonathan Finder (Le Bonheur Children’s Hospital), Dr. Pradeep Mammen (UTSW), Dr. James Poysky (Katy Child Psychology Associates), and Dr. Kindann Fawcett (Arkansas Children’s Hospital) for participating in our interactive care panel. These panelists provided the community with valuable information in the areas of pulmonary care across the lifespan, cardiac care for Duchenne patients and female carriers, learning and behavior considerations, and nutrition and eating practices.
PPMD’s Ann Martin, Certified Genetic Counselor, also participated in the care panel to answer attendee questions about genetics in Duchenne; for more information, please review the pre-recorded presentation below. Feel free to contact PPMD’s genetic counselors via email or schedule an appointment through Calendly. They are happy to discuss your genetic testing report, provide more information about our free genetic testing program, Decode Duchenne, and/or walk you through creating an account in The Duchenne Registry.
Duchenne Research and Clinical Trials
Thank you to our sponsoring industry partners for making this program possible. Below are pre-recorded presentations with updates about current and ongoing clinical trials in Duchenne. Please note questions can be submitted to our partners at any time (contacts below).
Genetics
Questions?
coordinator@parentprojectmd.org
Astellas
Questions?
astellas.registration@astellas.com
Fibrogen
Questions?
belmankabadi@fibrogen.com
lelantos@fibrogen.com
NS Pharma
Questions?
DMDresearch@nspharma.com
Pfizer Inc.
Questions?
katherine.beaverson@pfizer.com
PTC Therapeutics
Questions?
abruns@ptcbio.com
Santhera Pharmaceuticals
Questions?
jodi.wolff@santhera.com
Sarepta Therapeutics
Questions?
advocacy@sarepta.com
Clinical Trial Overview
Questions?
eric@parentprojectmd.org
