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“Emma Ciafaloni, MD, leads the team at the U of R. Dr. Ciafaloni, and her team is the heart of care at the U of R clinic.”
for Duchenne for a very long time. Their passion, persistence, and forward-thinking have significantly impacted patients, families, and research advancement. We, as other clinics, have benefitted from their support. Their website educational material and webinars are outstanding, and their grant support for our clinic makes it possible to improve what we can offer to our patients continuously.
super visionary, dedicated, and have many years of experience in caring for Duchenne patients at all stages of their disease journey.
What makes the Certified Duchenne Clinic at the U of R different from other clinics? The people. Our team of nurses, nurse practitioners, physical therapists, genetic counselors, social workers, and specialized doctors are caring,
What are some of the exciting things happening in Duchenne that would provide hope to the families and patients you see? Many! Gene therapy trials are advancing rapidly, next-generation and more effective skipping drugs
ROCHESTER WOMAN ONLINE : DECEMBER EDITION 2021
We also do not transition our patients from pediatrics to adults as we care for patients of all ages in our neuromuscular clinic. So, we are their “medical home” and their advocates for their lifetime.
are under development, and better forms of corticosteroids are on the horizon. There is hope! What’s the one piece of advice you could provide families that have been recently diagnosed with Duchenne? There is hope, and you are not alone. With the best standard of care and new transformative treatments becoming available or already available, living with Duchenne is changing rapidly for the best. Find a team and a clinic that you trust and feel comfortable with and stay involved with research: we can only do better as a Duchenne community with the help and participation of our patients and their family.
