Continuing its nearly decade long initiative, MSA NJ is again working to obtain awareness proclamations in each of the 50 states. In 2021, New Jersey made this proclamation permanent!
In 2022, the first posting from the state of Massachusetts held special meeting as this one was always obtained by Margie Paulmann, the sister of Dolores Roemer, the inspiration for MSA NJ. Her husband carried on in her absence and the governor’s office issued both a proclamation and a citation of recognition to our aunt for her awareness efforts.
Check the status of our efforts and/or register to help.
Throughout the month, we continue to post approved proclamations. Please visit our Facebook page, like and share these announcements so each governor’s office can view the community’s appreciation and awareness these proclamations bring, which will encourage them to continue to grant them each year. Your support here takes but a moment yet helps to further the cause. Greater awareness helps to improve support, education, and research funding.
Scheduled Events
For March MSA Awareness Month, we are offering the following educational and support sessions open to all members of the MSA community, not just those in the tri-state region.
Separate registration required for each session.
March 11, 2023 11 a.m. – 1 p.m. Monthly Support Group Meeting
Our monthly support group meeting is open to patients, care partners, family members and friends. All are welcome, even those outside the tri-state region. For information, email contact@msanj.org
Visit our website for the 2022 Support Group Schedule.
“MSA NJ March Event Highlights”
MSA NJ’s picks for some key presentations over the years…
It is hard to pick a “best of…” there have been so many valuable sessions by experts in the field but below links represent a good mix of information worth viewing throughout the month to help those of you who may have missed them or who might find a refresher useful. Just click on the links provided, and feel free to view other sessions from past conferences!
An Overview of Multiple Systems Atrophy and its Management – Dr. Andres Deik, MD, MS Ed
This presentation will provide an overview of the epidemiology, pathophysiology, signs, symptoms and diagnosis of multiple systems atrophy. Management options will be discussed. Finally, an overview of ongoing and recently finished clinical trials will be provided.
Dr. Andres Deik, MD, MS Ed is a graduate of the Universidad del Norte in Barranquilla, Colombia. He completed his neurology residency and Movement Disorders fellowship at Mount Sinai Beth Israel in New York City. He also completed a Master’s in medical education at the University of Pennsylvania in 2016. He joined the movement disorders group at the University of Pennsylvania in 2013, and now divides his time between clinical care, research and education. Dr. Deik directs the University of Pennsylvania’s COPE clinic, a multidisciplinary clinic devoted to the management of patients with atypical parkinsonian syndromes, including multiple systems atrophy. He is also the director of experimental therapeutics at the movement center and runs several clinical trials for patients with movement disorders, including multiple systems atrophy.
View Dr. Deik Session
An Overview of MSA Slides Dr. Deik
Parkinson Voice Project – Speaking with Intent – Samantha Elandary, MA, CCC-SLP
Join Parkinson Voice Project Founder Samantha Elandary as she describes SPEAK OUT! and LOUD Crowd therapy. This speech therapy program was specifically developed to address the speech and voice issues related to Parkinson’s and Parkinson’s-Plus disorders. The premise of the program is to “speak with intent.” Samantha will describe how and why “intent” is effective for this patient population. She will also review common speech and swallowing challenges for those diagnosed with MSA and how speech therapy can help.
Samantha Elandary, MA, CCC-SLP is the Founder and Chief Executive Officer of Parkinson Voice Project. She holds a BA in communication disorders and English and holds an MA in speech-language pathology from the University of North Texas.
Since 1999, Samantha has worked exclusively with individuals with Parkinson’s and has devoted her career to making quality speech therapy services accessible to this patient population. She created “The LOUD Crowd®,” and founded “Parkinson Voice Project,” a nonprofit speech therapy clinic solely dedicated to helping people with Parkinson’s preserve their speech and communication. In 2010, Parkinson Voice Project developed an individual speech treatment for Parkinson’s called “SPEAK OUT!®” which was combined with The LOUD Crowd.
View Parkinson Voice Project Session
Speaking with Intent Samantha Elandary
Practical Methods to Improve Everyday Life – Joellyn Fox, DPT
Practical strategies for living at home with MSA are provided in this session by Dr. Fox, MSA NJ Board member and Lead therapist at Penn Medicine.
Sleep Dysfunction in Multiple System Atrophy — Callum M Dupré, MD
Dr. Dupree discusses sleep disorders present in the MSA population, and also what can be done about them.
Improvisation Therapy – Gretchen Poole
Learn how drama and acting can help support emotional and movement issues in this light session for coping with MSA.
The 2021 Virtual Webinar Series
Many experts from our own Board members to professionals across the country and around the world contributed to a stand out series. Some particularly helpful and timeless sessions are highlighted.
MSA Roadmap After Diagnosis – March 20, 2021 Sessions 1 & 2
These sessions provide resources and information for planning as you progress from diagnosis through latter stages of MSA.
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
How Do I Tell the Children? – Principles and Pitfalls – March 13, 2021
Learn effective communications to help children understand the impact of MSA on family members, and find out how you can obtain resources. Thanks to our partners across the pond, the MSA Trust.
Emma Rushton, Support Services, MSA Trust
Katie Rigg, MSA Nurse Specialist, MSA Trust
The Benefits of Brain Donation for MSA – March 2, 2021 Session 2
Robin Riddle – CEO, Brain Support Network
A realistic discussion about the importance of planning ahead for those who want to confirm diagnosis and contribute to valuable MSA research through brain donation.
https://www.msanj.org/msanj-virtual-conference/
Inspirations: One Family’s Story and Messages from the MSA NJ Community
Frank and Barbara Tinari
Gain inspiration by the Tinari’s story about living life to the fullest with MSA, followed by some messages from other members of the MSA NJ Community. This session was hosted by MSA NJ at the 2021 MSA Coalition Virtual Conference.
Anyone participating in awareness month activities such as publishing an article in a local paper, hosting a fundraiser for MSA NJ, or sharing some valuable information and tips, please reach out so we can let others know!
Contact@MSANJ.org
Finally, be sure to take care of yourself. Some resources to support your well-being can be found at the MSA NJ Tranquility Lounge.
Webinar 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 MSA NJ media. Webinar content is the property of MSA NJ and the presenters and may not be duplicated or shared without express written permission. Screenshots and recording is strictly prohibited. Registration and participation indicates your acknowledgment and agreement to these terms. You may cancel your registration at any time. Thank you for participating.
