Robin learned about neurodegenerative decline when her late father, Larry, was diagnosed with progressive supranuclear palsy (PSP) in 2004. The donation of Larry’s brain in 2007 to Mayo Clinic in Jacksonville, Florida, was Robin’s first organization of a brain donation. Her efforts to help MSA, PSP, Parkinson's, and Lewy body dementia families nationally became the nonprofit organization, Brain Support Network, in 2012. Robin and BSN have arranged over 800 brain donations.
Carol Langer trained as a CPA, and after working in public accounting was a senior financial executive for technology companies in the telecommunications, semiconductor test equipment, software and other technology areas until she retired in 2000 to care for her husband Rob, who was diagnosed with multiple system atrophy in 1998. She joined the Board of Directors and became Treasurer of the Multiple System Atrophy Coalition in 2013. Carol lives in Boston, MA and serves as a member of the Leadership Board and Chair of the Neuroscience Advisory Committee for Beth Israel Deaconess Medical Center, as well as a Trustee and Treasurer of the Huntington Theatre Company. Carol has an A.B. from Boston University in English Language and Literature and an M.S. from Northeastern University in Accounting.
Pam will describe the MSA Coalition’s research program highlighting the outcomes of some notable research projects. She will also point out some “not to be missed” research talks coming up on October 1 & 2.
Secretary, MSA Coalition Board of Directors, Chair, Research Committee
Speaker Bio
Pam has served on the Board of Directors as Secretary since 2013 and has led the Research Committee as Chair through seven research grant cycles. Liaising with the Scientific Advisory Board and adhoc peer review committee she administered the grant application and peer review process, culminating in the awarding of over $2 million in research grants since 2013. She maintains an active presence on social media, sharing information and keeping up to date on the latest MSA research news. Her key goals are to encourage worldwide collaboration among the MSA community, promote more awareness, encourage grassroots fundraising and support researchers to find a cure. Pam was recognized by the global MSA community with the JP Schouppe “JiePie” Award for excellence in MSA Advocacy in 2012. She has been nominated four times for the WeGo Health Activist Awards, and was named WeGo Health’s “Best in Show – Facebook” in 2015.
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The MSA Coalition is a global leader in providing educational programs for MSA patients, care partners and healthcare providers. In this presentation, Don Crouse provides an overview of the MSA Coalition’s most important educational programs and explains how to find them on the msacoalition.org website.
Don joined the MSA Coalition in 1998 and is one of the originating Board members. Don became connected to multiple system atrophy as a result of his marketing career in the pharmaceutical industry, where he worked on two products commonly prescribed to people with MSA. In his 23 years of volunteer service, Don has played an invaluable leadership role in building the MSA Coalition into a world-class charitable organization. In 2012, it was his vision to expand the organization from primarily being a support group into a nonprofit that also funded research and developed educational programming.
David Stamler, M.D. has over 25 years of experience in the pharmaceutical industry and has led three drug approvals for treatment of neurological disorders. He was appointed Chief Executive Officer of Alterity Therapeutics in January 2021 after having served as the Chief Medical Officer and Senior Vice President, Clinical Development since 2017. Prior to joining Alterity, Dr. Stamler was Vice President and Therapeutic Head for Movement Disorders at Teva Pharmaceutical Industries from 2015 to 2017 after Teva acquired Auspex Pharmaceuticals, where he had served as the Chief Medical Officer since January 2011. While at Auspex/Teva, Dr. Stamler led the development and approval of deutetrabenazine for the treatment of Huntington’s disease, an Orphan disease, and tardive dyskinesia. Dr. Stamler received his M.D. and B.A. degrees from the University of Chicago.
This session focuses on the power of positive thinking and living your best life with MSA. MSA NJ Board Member, Victoria Pena-Cardinali, a licensed clinical social worker (LCSW) and Julia Landicho, a nursing student and MSA NJ volunteer speak with Barbara and Frank Tinari to discuss their journey with MSA. This inspirational couple speak candidly about how their lives changed since the MSA diagnosis and how they continue to live life to the fullest possible. Following their conversation, other members of the MSA NJ community share snapshots of their stories, thoughts and strategies in support of all those living with MSA.
Victoria has a Masters Degree in Social Work with a clinical concentration from New York University. She has years of experience in the area of Medical Social Work at Capital Health Systems.Throughout her career, Victoria has been able to work closely with patients and their families to address their unique and personal needs related to management of chronic diseases such as adjustment issues, community reintegration, service connection, advocacy, collaboration, support counseling and transitions of care among many others. In addition to program clinical management and development responsibilities, Victoria is a provider of psychotherapy services for adult individuals and their families treating mood disorders linked to psychosocial stressors related to chronic illness and adjustment issues. Victoria is an MSA NJ Board member, and often facilitates support group meetings as part of her work with this organization.
Kym Roemer is the Board Chair and Co-Founder of MSA NJ. She has been involved in Multiple System Atrophy advocacy since losing her mother to MSA over a decade ago. She is driven to honor her mother's legacy by supporting patients and their caregivers as they battle MSA.
Kym, a lifelong New Jersey resident, holds two Master's degrees in education and management and currently works as a consultant in the pharmaceutical industry.
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This presentation provides an overview of some of the mechanisms leading to the aggregation of alpha-synuclein. Following a description of some of the modifications that alpha-synuclein can undergo, it illustrates with two preclinical examples how these modifications can be targeted in order to counteract the aggregation process and prevent the demise of neurons.
I Graduated in 2003 from the university of Bordeaux (France) where I did my PhD on the development of mouse models of MSA. After a post-doctoral fellowship in the department of Neurology at UCLA where I worked on interactions between alpha-synuclein and pesticides, I was appointed in 2007 as a researcher at the French national center for scientific research. My research interests are to identify disease mechanisms and operate the preclinical validation of disease-modifying strategies in MSA. I serve as the coordinator of the scientific advisory board at ARAMISE (French MSA association)
In this talk I will discuss the challenges that health care workers and patients are confronted with and some solutions through a multidisciplinary approach. I will shortly discuss on the challenges in making the diagnosis, a few diagnostic pitfalls, the absence of cure, the consequences in these diagnostic challenges for obtaining support, drug availability (may be more of a problem in some countries than others), challenges in organizing transmural care. I will discuss the organization of a multidisciplinary team, and how health care workers and patients can contribute in quality improvement.
Patrick Cras, MD, PhD. was born on June 19th, 1958 and graduated as an MD in 1983. His research mainly focuses on neurodegenerative disease such as Parkinson’s disease and dementia, with an emphasis on rapidly developing dementias such as prion disease and Creutzfeldt-Jakob disease. Presently Chairman of the Department of Neurology of the Antwerp University Hospital and professor of neurology at the University of Antwerp, he trained as a research fellow in the Laboratory of Neuropathology at the Born Bunge Institute (IBB, 1983-1985) and in the pathology laboratory at the Antwerp University Hospital followed by a Fogarty Fellowship in neuropathology at Case Western Reserve University, Cleveland Ohio (1989-1991). Back at the University of Antwerp, he developed the biomarkers diagnosis of Alzheimer’s disease in cerebrospinal fluid (CSF). Biobanking of brains, DNA and CSF was started in collaboration with VIB (prof. C. Van Broeckhoven). In 1998 he initiated the surveillance center for human prion diseases in collaboration with Sciensano and the European Center for Disease Control. Our center performs CSF biomarker diagnosis for more than 500 patients per year. Close to all brain autopsies of patients with rapidly developing dementia suspected of CJD in Belgium are performed at the Antwerp University Hospital. He is the medical director of the IBB Biobank. He (co-)authored more than 300 international peer reviewed articles (21412 citations, h index 71, Google scholar 29/8/21). He was Chairman of the Ethics committee, Antwerp University Hospital (2000-2020) and University of Antwerp (2008-2020), a member of several committees of the High Council for Medicine (Hoge Gezondheidsraad), the National Bioethics Committee (Raadgevend Comité voor Bioethiek), previously chairman of the Belgian Board of Neurology and of the Neurology Committee of the Commission for Accreditation of Medical Doctors, as well as chairman of the European Board of Neurology (Union Européenne des Médecins Spécialistes) and Palliative Scientific Panel Chair of the European Academy of Neurology. His current research focuses on biomarkers, neuropathology and phenotype/genotype correlation of neurodegenerative diseases involving dementia and movement disorders. He has also lectured and published on the ethics of human experimentation, end-of-life decisions, euthanasia and research involving vulnerable subjects. He has served as principal investigator in numerous pharmaceutical industry sponsored studies with different compounds in Alzheimer’s and Parkinson’s disease.
Samantha is the nurse specialist for the South of England. She trained at Addenbrookes Hospital in Cambridge and has over 25 years of experience. She has worked in neurology most of her career, including Atkinson Morley’s Hospital in Wimbledon and later as a Ward Sister in Hertfordshire. She has worked in the hospice setting and within the charity sector at management level. Most recently she worked as a Parkinson’s Disease Nurse Specialist and undertook further studies at London South Bank University.
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