Acorda Therapeutics, Inc. (Nasdaq:ACOR) today unveiled the “Live Well. Do Tell.” initiative for the Parkinson’s disease community. Its goal is to encourage the community to improve conversations about Parkinson’s symptoms among the circle of care, including people with Parkinson’s (PwPs), care partners, advocacy and healthcare professionals. The first output of the initiative -- the Statement of Need -- was developed based on learnings and insights from a multi-disciplinary steering committee of leaders in the Parkinson’s community who collaborated to discuss unmet needs in understanding and communicating about Parkinson’s symptoms.
“Research suggests that PwPs may not discuss the full range of their symptoms or their impact with their physicians and care partners for various reasons,” said Matthew Stern, M.D., Professor Emeritus of Neurology, Perelman School of Medicine, University of Pennsylvania and Steering Committee Member. “Clear and effective communication between PwPs and physicians is critical to better understand important aspects of a PwP’s well-being.”
“Acorda is dedicated to those living with neurological conditions. It is a privilege to serve the Parkinson’s community through the launch of this initiative, which aims to address the many barriers PwPs and their care partners face in communicating about Parkinson’s symptoms, including OFF periods,” said Ron Cohen, M.D., Acorda’s President and CEO. “We are proud to have partnered with many members of this community on this initiative to find the tools to understand and discuss Parkinson’s symptoms.”
About “Live Well. Do Tell.”
“Live Well. Do Tell.” is an initiative, created by Acorda with input from a multi-disciplinary steering committee of Parkinson’s leaders and experts, to generate a shared understanding, build awareness and develop an approach to bridge communication gaps among PwPs, care partners, advocacy and healthcare professionals to inspire a movement for optimal conversations.
The “Live Well. Do Tell.” Statement of Need includes six actions for the Parkinson’s community to help identify and communicate about their symptoms. These actions are based on insights from the steering committee as well as research conducted by Acorda and third parties.
The steering committee included PwPs, care partners, movement disorder specialists, a nurse practitioner and representatives from key advocacy groups, including the American Parkinson’s Disease Association, Caregiver Action Network, Davis Phinney Foundation, The Michael J. Fox Foundation, Parkinson’s Foundation and the Parkinson & Movement Disorder Alliance.
“Like many people who live with Parkinson’s, I struggle with the reality of my Parkinson’s symptoms every day,” said Steve DeWitte, Founder and a member of the Board of Directors for the Connecticut Advocates for Parkinson’s (CAP) and Steering Committee Member. “New resources and tools that help us talk with our circle of care about the impact of re-emerging symptoms are necessary.”
About Parkinson’s and OFF Periods
Approximately one million people in the U.S. are diagnosed with Parkinson’s;1 OFF periods are experienced by approximately 350,000 in the U.S.1,2,3
Parkinson’s is a progressive neurodegenerative disorder resulting from the gradual loss of certain neurons responsible for producing dopamine. It causes a range of symptoms including impaired movement, muscle stiffness and tremors.4 As Parkinson’s progresses, people will experience OFF periods, which are characterized by the re-emergence of Parkinson’s symptoms.5,6 This re-emergence can occur even when an individual’s treatment regimen has been optimized.7
About Acorda Therapeutics
Founded in 1995, Acorda Therapeutics is a biopharmaceutical company focused on developing therapies that restore function and improve the lives of people with neurological disorders. Acorda has a pipeline of novel neurological therapies addressing a range of disorders, including Parkinson’s disease and multiple sclerosis. Acorda markets two FDA-approved therapies, including AMPYRA® (dalfampridine) Extended Release Tablets, 10 mg.
This press release includes forward-looking statements. All statements, other than statements of historical facts, regarding management's expectations, beliefs, goals, plans or prospects should be considered forward-looking. These statements are subject to risks and uncertainties that could cause actual results to differ materially, including: the ability to realize the benefits anticipated from acquisitions, among other reasons because acquired development programs are generally subject to all the risks inherent in the drug development process and our knowledge of the risks specifically relevant to acquired programs generally improves over time; we may need to raise additional funds to finance our operations and may not be able to do so on acceptable terms; our ability to successfully market and sell Ampyra (dalfampridine) Extended Release Tablets, 10 mg in the U.S., which will likely be materially adversely affected by the March 2017 court decision in our litigation against filers of Abbreviated New Drug Applications to market generic versions of Ampyra in the U.S.; the risk of unfavorable results from future studies of Inbrija (levodopa inhalation powder) or from our other research and development programs, or any other acquired or in-licensed programs; we may not be able to complete development of, obtain regulatory approval for, or successfully market Inbrija or any other products under development; third party payers (including governmental agencies) may not reimburse for the use of Ampyra, Inbrija or our other products at acceptable rates or at all and may impose restrictive prior authorization requirements that limit or block prescriptions; the occurrence of adverse safety events with our products; the outcome (by judgment or settlement) and costs of legal, administrative or regulatory proceedings, investigations or inspections, including, without limitation, collective, representative or class action litigation; competition; failure to protect our intellectual property, to defend against the intellectual property claims of others or to obtain third party intellectual property licenses needed for the commercialization of our products; and failure to comply with regulatory requirements could result in adverse action by regulatory agencies.
These and other risks are described in greater detail in our filings with the Securities and Exchange Commission. We may not actually achieve the goals or plans described in our forward-looking statements, and investors should not place undue reliance on these statements. Forward-looking statements made in this press release are made only as of the date hereof, and we disclaim any intent or obligation to update any forward-looking statements as a result of developments occurring after the date of this press release.
1 Parkinson’s Foundation. Statistics. Available from: http://www.parkinson.org/Understanding-Parkinsons/Causes-and-Statistics/Statistics. Accessed November 2017.
2 Ahlskog JE, Muenter MD. Mov Disord. 2001;16(3):448-458.
3 Decision Resources. Parkinson’s Disease (Report: January 2015). 2015.
4 Parkinson’s Foundation. What is Parkinson’s?. Available from: http://www.parkinson.org/understanding-parkinsons/what-is-parkinsons. Accessed January 2018.
5 Olanow CW, Stern MB, Sethi K. Neurology. 2009;72(21 Suppl 4):S1-136.
6 Obeso JA, Rodriguez-Oroz MC, Chana P, et al. Neurology. 2000;55(11 Suppl 4):S13-20.
7 Stocchi F. Expert Opin Pharmacother. 2006;7(10):1399-1407.
Acorda Therapeutics, Inc.
Gail Cohen, 914-326-5162