Event Calendar
CurePSP has a variety of events for patients, families, care partners, physicians and allied healthcare professionals. In addition, our volunteers run a variety of fundraising events that are essential to supporting our mission. Please review this schedule for events that may be in your area and would be of interest to you.
If you would like to put on an event, please contact the Events Department at events@curepsp.org
You are invited to join us for an afternoon of music featuring a collection of South Florida’s finest musicians.
The 8th Annual Bonelli Music Bash and Silent Auction is in remembrance of John Bonelli, drummer and vocalist, that passed away from Progressive Supranuclear Palsy. Join us and help raise funds for CurePSP in their research for finding a cure for Progressive Supranuclear Palsy (PSP), Corticobasal Degeneration (CBD), and Multiple Symptom Atrophy (MSA). We hope to see you there!
The event will feature a collection of So. FL musicians. Many of them have performed, recorded, or toured with countless artists. From popular singers like Johnny Cash to Frank Sinatra and Jazz players from Mose Allison to Jaco Pastorius. They have also collectively toured the entire globe in support of bands like Miami Sound Machine, Bee Gees, KC and the Sunshine Band and Phil Collins.
$25 per person with $5 per person going to venue. Cash, check and credit card accepted. Registration is on-site only.
If you have any questions about the event, please email johnloisbon@bellsouth.net
About the Webinar
Research is critical to finding treatments and cures for progressive supranuclear palsy (PSP), corticobasal degeneration (CBD) and multiple system atrophy (MSA). In this webinar, CurePSP’s Associate Director of Scientific Affairs and Partnerships, Jennifer Brummet, PhD, will discuss the ins and outs of the scientific research process, how research moves from the lab to patients, who is funding research in these areas, and other topics related to research on PSP, CBD, and MSA.
There will be time at the end for Jennifer to answer questions from viewers. Submit your questions via registration or email to events@curepsp.org.
This webinar will be recorded and will be available on our YouTube channel following the event. We will email all registrants a link when it’s ready to view.
Registration is free of charge!
About Jennifer Brummet, PhD
Jennifer Brummet is CurePSP’s Associate Director, Scientific Affairs and Partnerships. In this role, she manages CurePSP grant programs, several key partnerships and other initiatives pertinent to CurePSP Cure pillar. Jennifer was most recently the Research Manager at the American Epilepsy Society where she supported the Society’s early career grant programs, professional development programs and other research initiatives. Her previous roles include working at the Society for Neuroscience where she managed science policy and advocacy programs, and the National Science Foundation where she was responsible for supporting behavioral and cognitive science grant programs and conducting analyses of program outcomes. Jennifer received her PhD in Behavioral Neuroscience from Michigan State University, and a BA in psychology from Illinois Wesleyan University. She is an auxiliary board member with C2ST (the Chicago Council on Science and Technology) and volunteers with the Health Research Alliance.
CurePSP and PSPA are collaborating to organize The PSP and CBD International Research Symposium on October 19-20, 2023, which aims to bring together experts from all over the world to share the latest scientific breakthroughs. The symposium will showcase PSP and CBD research conducted by distinguished neuroscientists and is open to all researchers who are interested in preclinical and clinical neuroscience. This hybrid symposium will offer both online and in-person learning opportunities!
The event will be held in Central London, UK!
The two-day scientific program will feature discussions and presentations covering multiple themes including: inflammasome, synapses, Tau, prevention, a broad spectrum of PSP/CBS, CBD research updates, co-pathologies, models of clinical care and more. The conference will be relevant to basic and translational neuroscientists in addition to those treating patients and advancing best practices in care delivery.
This event is technical and is intended for a medical and research audience.
CurePSP sponsors and organizes family conferences among its various educational activities, allowing people to learn more about PSP, CBD and MSA and develop a sense of community.
This year’s CurePSP Virtual Fall Family Conference will consist of pre-recorded sessions from our Orlando Fall Family Conference and live Q&A sessions. The event will be split into two parts. The first part will be shown on Tuesday, October 31st, and the second on Thursday, November 2nd.
We partnered with the University of Florida and the University of South Florida to provide interactive discussion groups and informative presentations on research updates, navigating care, managing dysphagia, enhancing accessibility in the home, nutrition and more!
All sessions will be recorded and posted on our YouTube after the event. Registration is free of charge.
Agenda* (in Eastern Time)
1:00 – 1:05 PM: Opening Remarks
1:05 – 1:35 PM: Managing Dysphagia: Tools and Tips for Success
Pre-recorded presentation from the Orlando Conference.
Speaker: Alexandra Brandimore, PhD, CCC-SLP
Dysphagia, or difficulty with swallowing, is a common symptom of PSP, CBD and MSA and can present eating and safety complications. In this interactive session, Dr. Alexandra Brandimore will provide valuable guidance and strategies to help you monitor and adapt to changes to swallow function throughout the diagnosis.
1:35 – 2:05 PM: Practical Strategies for Nutritional Health
Pre-recorded presentation from the Orlando Conference.
Speaker: Matt Beke, MS, RDN, LDN
PSP, CBD and MSA can pose unique challenges in maintaining optimal nutritional health. Matt Beke will educate you on innovative approaches, evidence-based strategies and beneficial resources to enhance your overall well-being and achieve necessary nutritional goals.
2:05 – 2:50 PM: Updates on Progressive Supranuclear Palsy (PSP) & Corticobasal Degeneration (CBD): Tale of Two Cousins
Pre-recorded presentation from the Orlando Conference. Dr. McFarland will answer questions during the live Q&A later in the day.
Speaker: Nikolaus McFarland, MD, PhD
PSP and CBD share common symptoms and pathology, two “cousins” in the frontotemporal lobar dementia family. Dr. McFarland will discuss the features of each disease, commonalities and differences. He will present advances in new diagnostic criteria, imaging biomarkers and pathology, and discuss treatment options and strategies for patients and care partners.
2:50 – 3:10 PM: Break
3:10 – 3:40 PM: Navigating Care Across the Diagnosis Journey
Pre-recorded presentation from the Orlando Conference. Jessica will answer questions during the live Q&A later in the day.
Speaker: Jessica Shurer, MSW, LCSW
Planning for future needs and making necessary decisions around care can feel overwhelming at times, and it can be hard to know where to start. In this interactive session, Jessica Shurer will discuss resources that PSP, CBD and MSA patients and families often use as they navigate their diagnosis journey. Participants will be able to ask questions and learn tips from one another.
3:40 – 4:25 PM: Live Q&A Panel
Speakers: Nikolaus McFarland, MD, PhD, Jessica Shurer, MSW, LCSW and Joanna Teters
Joanna Teters, Manager of Support Programs at CurePSP, will lead a live Q&A session with Jessica Shurer and Dr. Nikolaus McFarland. They will be answering questions that were submitted during registration as well as those that are asked in the live chat.
4:25 – 4:30 PM: Closing Remarks
4:30 – 5:30 PM: Optional Interactive Discussion Groups via Zoom
During these discussion groups, you’ll have the opportunity to connect with other event attendees and talk through the subjects covered during the sessions.
*Agenda subject to change.
CurePSP sponsors and organizes family conferences among its various educational activities, allowing people to learn more about PSP, CBD and MSA and develop a sense of community.
This year’s CurePSP Virtual Fall Family Conference will consist of pre-recorded sessions from our Orlando Fall Family Conference and live Q&A sessions. The event will be split into two parts. The first part will be shown on Tuesday, October 31st, and the second on Thursday, November 2nd.
We partnered with the University of Florida and the University of South Florida to provide interactive discussion groups and informative presentations on research updates, navigating care, managing dysphagia, enhancing accessibility in the home, nutrition and more!
All sessions will be recorded and posted on our YouTube after the event. Registration is free of charge.
Agenda* (in Eastern Time)
1:00 – 1:05 PM: Opening Remarks
1:05 – 1:50 PM: Update on Current Research
Pre-recorded presentation from the Orlando Conference.
Speaker: Kristophe Diaz, PhD
During this session, Dr. Kristophe Diaz will present updates on the state of research for PSP, CBD and MSA. You’ll gain a deeper understanding of ongoing efforts toward finding treatments and cures and learn what scientific advancements can mean for individuals affected by these diseases.
1:50 – 2:35 PM: Multiple System Atrophy (MSA): Diagnosis, Treatment and Future Research
Pre-recorded presentation from the Orlando Conference. Dr. Zesiewicz will answer questions during the live Q&A later in the day.
Speaker: Theresa Zesiewicz, MD
This session will shed light on the signs and symptoms, guidelines for diagnosis, strategies for treating symptoms and future research for MSA. Dr. Zesiewicz will offer helpful insights to individuals seeking a deeper understanding of the complexities of MSA.
2:35 – 3:10 PM: Break
3:10 – 3:40 PM: Enhancing Accessibility and Independence in the Home
Pre-recorded presentation from the Orlando Conference.
Speaker: Rachael Dorsey, MOT, OTR/L
During this session, Rachael Dorsey will explore creative solutions for modifying living spaces to ensure accessibility. Rachael will also discuss techniques to empower people living with PSP, CBD and MSA, enabling a more fulfilling and self-reliant lifestyle.
3:40 – 4:25 PM: Live Q&A Panel
Speakers: Rachael Dorsey, MOT, OTR/L, Jessica Shurer, MSW, LCSW and Theresa Zesiewicz, MD
Jessica Shurer, Director of Clinical Affairs and Advocacy at CurePSP, will lead a live Q&A session with Dr. Theresa Zesiewicz and Rachel Dorsey. They will be answering questions that were submitted during registration as well as those that are asked in the live chat.
4:25 – 4:30 PM: Closing Remarks
4:30 – 5:30 PM: Optional Interactive Discussion Groups via Zoom
During these discussion groups, you’ll have the opportunity to connect with other event attendees and talk through the subjects covered during the sessions.
*Agenda subject to change.
At this year’s Hope as Big as Texas, we will “Share the Care!”
This in-person event is part of our “Share the Care” campaign in an effort to raise awareness for our Quality of Life Respite Care Grant. It will allow local community members to connect and learn about respite care for patients and their families. The respite care grant helps families needing in-home care for their loved ones. We will be joined by experts who will share research updates on PSP, CBD and MSA and the importance of in-home care for patients. We will also be joined by a family who received a Quality of Life Respite Care Grant; they will share the grant’s impact on their lives. We are excited to host our Hope as Big as Texas event in person this year, and it will also be recorded and available on our YouTube channel.
The fund grants 60 hours of in-home care services by a home care agency chosen by the awardee. Studies show that even a brief break or relief from caregiving responsibilities can improve the daily life of caregivers and their loved ones diagnosed with the disease. The importance of these services and the critical role of respite care are evident now more than ever. The critical nature of these services is clear, and CurePSP, with your support, is here to help! Our fight to find treatment and a cure is equally steadfast!
People with progressive supranuclear palsy (PSP), corticobasal degeneration (CBD) or multiple system atrophy (MSA) require increasing assistance over time to help with daily tasks and safety. Likewise, while caregiving can be rewarding, families and partners benefit from additional caregiving support as well as time to step away from the role. Yet, knowing how proactive to be around implementing new strategies for managing care and how to go about adding layers to the support system are often tricky and overwhelming challenges. In this webinar, Katrina Rudd, LICSW, C-ASWCM, a clinical social worker at the CurePSP Center of Care at Massachusetts General Hospital, will walk us through resources and considerations for hiring outside care services. She will be joined by Al Nixon, who will share his first-hand experiences and tips around professional in-home care for his wife with PSP.
This webinar will be moderated by Jessica Shurer, MSW, LCSW, CurePSP’s Director of Clinical Affairs and Advocacy. There will be time at the end for the presenters to answer questions from viewers. Submit your questions for Katrina and Al via registration or email to events@curepsp.org.
This webinar will be available on the CurePSP YouTube channel after the event. We will email registrants with the link when it’s ready. Registration is free of charge!
About the Speakers:
Al Nixon
Al Nixon is a long-time and dedicated volunteer with CurePSP, serving on the Community Advisory and Advocacy Committee, as a peer supporter, and as co-facilitator of the virtual Bereavement Support Group and local Connecticut-based Support Group. He spent 38 years in the ball and roller-bearing business and was the President of the Torrington Company, Vice President of Ingersoll Rand Company, and Chairman of the American Bearing Manufacturers Association. His wife, Eileen, was diagnosed with PSP in 2013 and passed away in 2016. His experience has her care partner has made him a passionate advocate for both increasing awareness of PSP, CBD and MSA and for helping families more easily navigate the healthcare and long-term care systems through their disease journey.
Katrina Rudd, LICSW, C-ASWCM
Katrina completed her undergraduate degree at the University of Rochester in 2007 with majors in Brain and Cognitive Sciences and Psychology. She earned her Master of Social Work degree in 2013 from Washington University in St. Louis with a concentration in health social work practice. During graduate school, Katrina interned in the Outpatient Neurology Clinic at the Rehabilitation Institute of St. Louis, at the St. Louis Cancer and Breast Institute, and with the Bethesda Hospice Care program. Following completion of her MSW, Katrina worked for several years as a Health Services Care Manager and Mentor Trainer at Mystic Valley Elder Services in Malden, MA. She was later offered a role at the National Multiple Sclerosis Society in which she oversaw the organization’s case management services across the New England region for six years. Last year, Katrina joined Massachusetts General Hospital as the Clinical Social Worker in the Parkinson’s and Movement Disorders Center. In this role, she supports individuals, care partners, and families impacted by PSP, MSA, CBD, Parkinson’s Disease, Huntington’s Disease, and other related movement disorders.
She is a Licensed Independent Clinical Social Worker (LICSW) in the Commonwealth of Massachusetts and a Certified Advanced Social Work Case Manager (C-ASWCM) who has a passion for supporting individuals and families impacted by progressive neurological conditions.