At Down with Dystonia, our mission is to support, educate, and empower people living with dystonia and their families while raising awareness about this third most common movement disorder. In order to make this mission a reality, our organization must stay current as medical research moves forward.
The people on our Board of Directors are wonderful advocates. They are people who live with dystonia, their family members, and community members who support them. But they are not medical experts. They don’t spend their days conducting research studies to determine how the brain functions, working with patients living with movement disorders, navigating NIH and FDA protocols, or reading the latest medical journals. Thankfully, someone who spends her days doing these things and who has a long history with our organization’s founder has joined us as Down with Dystonia’s first Medical Advisory Board Member.
2019 FunDrive Keynote Speaker Dr. Adrienne Keener to be First Medical Advisory Board Member
Dr. Adrienne Keener is a board-certified neurologist and Movement Disorders specialist at UCLA and the West Los Angeles VA PADRECC (Parkinson’s Disease Research Education and Clinical Center). She received her medical degree from the USC Keck School of Medicine, completed her Neurology residency training and Movement Disorders fellowship at UCLA before joining the UCLA faculty in 2016. Dr. Keener participates in clinical research and patient care. She is interested in interdisciplinary treatment approaches for Movement Disorders, including deep brain stimulation, botulinum toxin injection, and rehabilitation therapies. Dr. Keener is also passionate about medical education, and serves as the Associate Program Director of the UCLA Neurology Residency Program.
During her fellowship at UCLA, Dr. Keener began treating Down with Dystonia Founder and Executive Director Devin McClernan. He shared his dystonia journey with her, and they developed a doctor patient relationship that has continued to this day. As Devin developed the nonprofit organization, Dr. Keener provided advice and guidance in developing awareness campaigns for the lay public and for medical professionals.
After speaking at the 2019 FunDrive, Dr. Keener and the Board of Directors discussed formalizing a Medical Advisory Board at Down with Dystonia. The Medical Advisory Board will include neurologists and researchers specializing in movement disorders. They will advise the Board on the strategic direction of the organization, review content shared on the website treatment pages, and recommend publicly available research studies to share on the website and social media pages. Our Medical Advisory Board will consists of experts in their field who are passionate about helping us to bring down dystonia by:
- Supporting, educating, and empowering people living with dystonia and their families: We need your advice and knowledge in order to provide the most up to date information about diagnostic processes, treatments, and research programs on our website and through our social media.
- Raising awareness: We are developing education campaigns for the public and medical professionals. These will need to be updated consistently throughout our journey.
- Providing connections: Networking with hospital systems, pharmaceutical companies, universities, and researchers is critical to finding more effective treatments and, ultimately, finding a cure for dystonia.
We are happy to have Dr. Keener formally join the Down with Dystonia team, and we look forward to growing the Medical Advisory Board in 2021!
