Dear COPE-PD Friends,
Welcome to the very first edition of our COPE-PD Patient and Family Newsletter! We are thrilled to share this with you as part of our commitment to fostering connection, sharing meaningful stories, and supporting everyone involved in this journey. COPE-PD is more than a research study. It's a collaborative effort to improve the quality of life for individuals living with Parkinson's disease and related disorders - and for the loved ones who support them. Whether you are a patient or a carepartner, we consider you an essential part of this growing community.
We are proud to be a family of 233 patients, 198 carepartners, and 35 community neurologists, supported by a compassionate and interdisciplinary team including neurologists, psychiatrists, pharmacists, nurses, social workers, palliative care specialists, chaplains, and our dedicated study coordinators. So many of you have shared how meaningful your interactions with our care team have been - whether through a supportive call from our social worker, a kind gesture from our nurses, or guidance from our chaplains. We're deeply grateful to hear that these connections are making a difference.
As we continue this journey together, we want to ensure your voice is heard and your experience is valued. That's why we recently conducted a series of qualitative interviews with several participants to learn more about what matters to you. Your feedback was inspiring - and on common request stood out: a desire for more connected and informed. In response, we're launching this quarterly newsletter to keep you updated on study progress, highlight participant stories, and share helpful resources about living well with Parkinson's. This is a space to celebrate your milestones, reflect on challenges, and hear from others who understand what you're going through. We are also exploring the creation of an informal virtual forum where patients and carepartners can connect with one another, share experiences, and build a sense of community - on your own terms and in your own time. We recognize the strength, resilience, and wisdom each of you bring. Whether you are living with Parkinson's or supporting someone who is, your insights are shaping this study and paving the way for more compassionate, personalized care.
Thank you for being part of COPE-PD. Your trust, participation, and openness are what make this possible. If you have questions, would like to share your story, or have ideas for future editions, we would love to hear from you. Together, we are working toward a future where individuals and families affected by Parkinson's are supported not just medically, but emotionally and spiritually - at every step.
Team Email: COPE-PD_Help_DL@chet.rochester.edu
Toll Free#: 1-877-6COPEPD (1-877 626-7373)
Fax: 585-742-4209
Dear COPE-PD Community,
As we are coming upon Thanksgiving we would like to express our heartfelt thanks for your participation in this study and the work that you do for people with neurologic illness in your communities. We appreciate the opportunity to work with you and learn from you, and greatly appreciate everyone’s involvement and support in sending referrals. We are excited to share with you updates on study progress and additional news and events.
Patients can now enroll for the study directly through this study website by completing ourJoin COPE-PD Form
Judy Long is an outpatient palliative care chaplain and educator with UCSF Division of Palliative Medicine. She served as chaplain in a grant-funded neuropalliative clinic for people living with Parkinson’s, related disorders, and Alzheimer’s Disease. Judy developed and teaches courses in sustainable caregiving for carepartners of people living with neurologic illness, emotional resiliency for people living with neurologic illness, and clinician resiliency for the providers who serve them. On a personal note, she is also the caregiver of her husband who lives with early stage Alzheimer’s Disease.”
Please feel free to check out the video and article below and share with your patients and families.
- Helplessness & Hope in Parkinson's with Judy Long
- How Can Caregivers Support Patients Without Suffering Themselves? An Interview with Judy Long
We will be offering additional educational sessions in the coming year including serious illness communication trainings, loneliness and social isolation, lifestyle and diet, diversity, and trauma-informed care. Stay tuned!
Thank you!
The COPE-PD Team
Dear COPE-PD Community,
We hope that you are having an amazing Summer! We are thrilled to continue to work with all if you and greatly appreciate everyone's involvement and support in making this study a success! We are excited to share with you updates on study progress and additional news and events.
Amina Alio (Ph.D)
Dr. Alio has extensive experience in community-based participatory research, qualitative, and quantitative methods, and evaluation design. Her research areas include racial/ethnic health disparities and global health.
We are rolling out a series of optional communication workshops that you can attend via Zoom. We plan to host four of these sessions over the next year to give you the opportunity to practice and get feedback on challenging conversations (e.g., discussing prognosis, initiating hospice).
Our first session is coming up on Wednesday 8/14 at 6pm ET.
We are launching a brand-new newsletter for patients and families for us to stay connected, share their testimonials about the study, and to join in on their success stories. Stay tuned!
Thank you!
The COPE-PD Team
For more study information, or to find out if you and your care partner are eligible to participate, please contact our team.