#ConquerMSA

Welcome

MSA NJ has been working to stay connected with our community throughout the on-going pandemic through web-based support groups and a virtual conference.

This year, in lieu of our annual in-person conference held each March, we will be hosting weekly webinars each Saturday throughout the month. This series, in recognition of Multiple System Atrophy Awareness Month, will cover some of our most requested topics.  

Everyone welcome, registration is not limited to NJ/NY but space is limited. We hope you will join us!


Registration will be weekly for each webinar.  March 6 session registration link now available. Remaining links coming soon.
For more information or questions, email contact@msanj.org

March 6, 2021 11:00 am – 2:00 pm

Video - An Interactive Research Update for MSA: What You Need to Know

An Interactive Research Update for MSA: What You Need to Know

Video - The Benefits of Brain Donation for MSA

The Benefits of Brain Donation for MSA

Research and Your Role (2 sessions)

An Interactive Research Update for MSA: What You Need to Know
Dr. Patricio Millar and Dr. Jose Martinez – NYU Dysautonomia Center
Dr. Lucy Norcliffe-Kaufmann – MSA NJ Board Member 

The Benefits of Brain Donation for MSA 
Robin Riddle – CEO, Brain Support Network

Full Details

Dr. Patricio Millar will discuss the difference approaches to research and how those interplay to create a pipeline for new potential therapies enter the clinic. He will talk about ways in which you and your families can help speed up the progress being made in MSA research, what you can expect when you participate in a trial, and what to ask the study team. He will update us on what’s new in MSA research this year, including new advances in diagnosis and management, and how the shift towards telemedicine during the COVID-19 pandemic has helped bring more opportunities for clinical research in MSA. 

MSA NJ Board Member Dr. Lucy Norcliffe-Kaufmann will introduce Dr. Millar and Mr. Jose Martinez, so you have an opportunity to ask them key questions about the future of research in MSA, recent progress towards new therapies, and what you can do to help speed up getting new treatments to the clinic. 


Dr. Patricio Millar is a neurologist at the NYU Dysautonomia Center. He completed his fellowship program in Movement Disorders at FLENI Medical Center in Buenos Aires Argentina. He then went on to complete a 1-year research fellowship at the Dysautonomia Center, where he holds the title of Instructor. He has been working with MSA patients for the last 4-years and has experience in diagnosing early stage MSA and managing patients throughout their journey. He has published several key research papers in high-ranking peer reviewed journals such as Neurology, BMC Neurology and Movement disorders as well as several book chapters. He is the principal investigator of the phase III ampreloxetine trial at NYU School of Medicine. 


Mr. Jose Martinez is a Research Scientist at NYU’s Dysautonomia Center. He has over 25-years experience in running clinical trials and has been a part of the major MSA trials over the past decade. He is highly trained in clinical trial management and is well recognized for his extensive experience in MSA research trials. He has made key contributions to the field of MSA in the last year, including his most recent publication on prevalence and impact of depression in MSA. He recently received a 10-year recognition award for his services in the Department of Neurology at NYU Medical Center. 


Dr. Lucy Norcliffe-Kaufmann is a clinical scientist with over 20-years experience in research on neurological disorders that affect the autonomic nervous system. She is a proud Board Member of MSA-NJ. Her recent research work has been published in the New England Journal of Medicine, Nature Genetics, Neurology, Brain and the Annals of Neurology. Her work has been covered by the BBC, Wall Street Journal, and NY Magazine. She currently works at Theravance BioPharma and holds the position of Adjunct Faculty in Neurology at NYU School of Medicine.
*Dr. Norcliffe-Kaufmann is representing MSA NJ and all opinions expressed are strictly her own.


12:45 PM – 1:00 PM Break


1:00 pm– 2:00 pm

The Benefits of Brain Donation for MSA 

Robin Riddle – CEO, Brain Support Network

In her talk, Robin will explain the value of brain donation — to you, your family, researchers, and the future.  There are two key reasons to donate your brain or a loved one’s brain.  The first reason is to obtain a confirmed diagnosis.  In fact, the diagnosis of MSA is only confirmed about half the time.  Having a confirmed diagnosis can bring peace of mind to family. The second reason is to support research into the causes, treatments, and cures for neurodegenerative disorders, such as MSA.  Robin will emphasize the need to plan in advance, particularly for MSA.  One of the first hurdles for families is selecting a cooperative funeral home or cremation organization.  Robin will share some NJ-specific and PA-specific resources.


Robin Riddle, CEO of Brain Support Network, learned about neurodegenerative decline when her late father, Larry, was diagnosed with Progressive Supranuclear Palsy (PSP) in 2004. With the help of three other caregivers, in July 2004, Ms. Riddle started the “San Francisco Bay Area PSP Support Group.” This group became Brain Support Network in 2005 with expansion to include MSA, CBD, and LBD. The donation of Larry’s brain in 2007 to Mayo Clinic in Jacksonville, Florida, was Robin’s first organization of a brain donation. Brain Support Network has helped nearly 1,000 families, including many MSA families, with brain donation.


March 13, 2021 11:00 am – 1:00 pm

Video - How Do I Tell the Children? - Principles and Pitfalls

How Do I Tell the Children? – Principles and Pitfalls

How Do I Tell the Children? – Principles and Pitfalls
Emma Rushton, Support Services, MSA Trust 
Katie Rigg, MSA Nurse Specialist, MSA Trust

Full Details

This session, hosted by two members of staff from the UK and Ireland based charity – MSA Trust, will explore some of the difficulties in talking to children and young people about an MSA diagnosis. We will share our experiences of how to approach this sensitive subject and some support materials that can help. The format will be largely ‘question and answer’, so we encourage attendees to come prepared with some questions that are important to them, so we can all learn from each other. 


Katie Rigg is the MSA Nurse Specialist for the North of England, Scotland and Ireland and is a registered sick children’s and general adult nurse with specialist qualifications in both community nursing and palliative care. Katie has worked at the MSA Trust for over 10 years. 

Over a number of years, she has gained experience of working in hospitals, community services, hospices and voluntary organizations. She has a particular interest in neuro-disability and neuro-degenerative conditions. Katie’s career prior to joining the MSA Trust was in children’s palliative care. 


Emma Rushton joined the Trust in 2014. She is the Information and Services Manager and has responsibility for ensuring that quality support services are given to all members of the Trust including people with MSA, their careers, friends and family and healthcare professionals. 

Emma has a background of working in education settings, particularly with children from disadvantaged backgrounds, those with behavioral difficulties and vulnerable children. 


March 20, 2021 11:00 am – 2:00 pm  MSA Roadmap After Diagnosis (2 sessions) 

Video - Session 1

MSA Roadmap After Diagnosis – Session 1

Video - Session 2

MSA Roadmap After Diagnosis – Session 2

Session 1 (appropriate for early to mid-stage) 
Victoria Pena-Cardinali – MSW, LSW Capital Health & MSA NJ Board Member  

Session 2 (appropriate for mid to later stage) 
Donald Pendley – Director, Hospice & Palliative Care NJ Home Care & Hospice Association
Jeanne Chirico – CEO/President, Hospice and Palliative Care Association of New York State

Full Details

MSA Roadmap After Diagnosis (2 sessions)  

11:00AM – 12:30PM (EST) 

Session 1 (appropriate for early to mid-stage)  

Victoria Pena-Cardinali – MSW, LSW Capital Health & MSA NJ Board Member  

During this presentation, Victoria will discuss managing emotions and how to cope after diagnosis as well as the importance of developing a health care network and network of support. She will also provide crucial information on how to navigate benefits and gain access to care. Additionally, she will talk about the benefits of advance care planning.


Victoria Pena-Cardinali is a licensed clinical social worker with more than 18 years of practice experience in clinical social work. She graduated from New York University in 2001 and joined Capital Health in 2009 at the Capital Institute for Neurosciences, providing psychotherapy and case management to patients with neurological conditions and chronic pain. Victoria specializes in treating adults experiencing depression and anxiety related to stress, loss, life transitions, chronic illness, chronic pain and trauma. Additionally, Victoria serves on the board of MSA NJ. 

Facilitated by STEM Research Student, Nursing Major, Julia Landicho


Break

12:30PM – 12:45PM (EST) 


12:45PM – 2:00PM (EST) 

Session 2 (appropriate for mid to later stage)  

Donald Pendley – Director, Hospice & Palliative Care NJ Home Care & Hospice Association  

Jeanne Chirico –  CEO/President, Hospice and Palliative Care Association of New York State 

Hospice and palliative care are two ways of providing comfort to suffering patients.  The presentation will explain the similarities and differences between hospice and palliative care, the “myths” of hospice and how one can initiate either process. Gaining an understanding of these services will help MSA patients and their families plan in advance in preparation for disease progression. 


Don Pendley is Director of Hospice and Palliative Care for the Home Care and Hospice Association of New Jersey.  For over two decades, he was President of the New Jersey Hospice and Palliative Care Organization. In those roles, he has advised hospices, healthcare professionals, government officials and and most importantly, patients and their loved ones seeking guidance on how to approach terminal illness.


Jeanne Chirico, MPA is the President and CEO of Hospice and Palliative Care Association of New York State (HPCANYS). Jeanne has presented many times at local, state, and national conferences on topics such as Advance Care Planning, palliative care and hospices services. She has spent the last 27 years serving in, and advocating for, quality hospice and palliative care for all.  

Facilitated by STEM Research Student, Nursing Major, Julia Landicho

March 27, 2021 11:00 am – 2:00 pm  

Video - Session 1 and 2

Engaging During the Pandemic (2 sessions)

Staying Motivated to Exercise – Time to Partner Up!
Dr. Joellyn Fox – Penn Therapy & Fitness & MSA NJ Board Member

Social Isolation: Understanding its Impact, Strategies to Combat it & Promote Connection
Lauren Zelouf – MSW, LSW Penn Hospital

Full Details

Engaging During the Pandemic (2 sessions)         


11:00AM – 12:15PM (EST) 

Staying Motivated to Exercise – Time to Partner Up!       

Dr. Joellyn Fox – Penn Therapy & Fitness & MSA NJ Board Member  

During this presentation, Dr. Fox will discuss developing a better understanding of the barriers to exercise as well as motivators to overcome those obstacles. She will also talk about how to develop an understanding of strategies for incorporating exercise/physical activity into everyday life. This session will also provide a list of practical recommendations by way of partnering up with people to exercise (care-partners or friends and family) in order to optimize motivation and integrate exercise into daily living 

Joellyn Fox is a Lehigh University graduate with dual degree in biology and psychology and a graduate of Temple University’s Doctorate in Physical Therapy program who now resides in Philadelphia, PA. Joellyn has been a clinician for 15 years with 12 years of specialty in the treatment of individuals with Parkinson’s disease at the Dan Aaron Parkinson’s Rehabilitation Center which is part of the University of Pennsylvania Health System. Joellyn is an adjunct professor at Drexel University, Rutgers University and Widener University as well as a frequent speaker at local Parkinson’s disease support groups in both Pennsylvania and New Jersey. Joellyn is on teaching faculty for the Parkinson’s Foundation’s Allied Team Training and is a board member for MSA NJ. She has been a keynote speaker at conferences hosted by CurePSP, Penn’s Movement Disorder Clinic, Penn Neurosurgery, Mainline Health and Good Shepherd Penn Partners. Joellyn is also a lab assistant for LSVT Global and is certified in LSVT BIG, Parkinson’s Wellness and Recovery (PWR!) and Rock Steady Boxing.  


Break

12:15PM – 12:30PM (EST) 


12:30PM – 1:45PM (EST) 

Social Isolation: Understanding its Impact, Strategies to Combat it & Promote Connection 

Lauren Zelouf – MSW, LSW Penn Hospital  

This session will explore the physical and mental health effects that social isolation has on older adults and individuals living with chronic illnesses and their care partners. As we have seen during the pandemic, social isolation and loneliness can have a devastating impact on wellbeing and quality of life. Coping strategies to combat the effects of social isolation and creative ways to maintain connection with loved ones will be discussed. 

Lauren Zelouf, MSW, LSW is a graduate of the University of Pennsylvania’s School of Social Policy and Practice, where she received her Master of Social Work in 2018. During her Master’s program, Lauren completed the Penn Aging Certificate (PAC) program and gained specialized skills and knowledge in the field of Geriatric Social Work. She completed her advanced-year field placement with the Penn Memory Center and continued on as the Interim Social Worker following graduation, where she supported patients and their families with memory disorders. After her time at the Penn Memory Center, Lauren spent two years as an inpatient Social Worker in a skilled nursing facility. Currently, Lauren is an outpatient Social Worker at the Parkinson’s Disease & Movement Disorders Center at Pennsylvania Hospital. Lauren is an active member of the Pennsylvania Society for Clinical Social Workers (PSCSW). She has a passion for serving patients and families living with neurodegenerative disorders. 

Facilitated by Margaret Novins, RN and MSA NJ Volunteer


Disclaimer

Zoom is not a private platform and as such your name, image, and any information you share during this session will be disclosed to participants and those who view this webinar. The sessions are being recorded and will be posted to msanj.org

Webinar content is the property of MSA NJ and the presenters, and may not be duplicated or shared without express written permission.  Screen shots and recording is strictly prohibited. 
 
Registration and participation indicates your acknowledgment and agreement to these terms.