Pathways to Parity: a digital course for adults and caregivers

PCOR educates patient advocates and their family caregivers on clinical research related to Alzheimer’s disease for better collaboration with physicians and researchers so that patients and their family caregivers can make better informed decisions about their healthcare.

Participation includes 10-hours of online workshops, ongoing access to a network of other advocates trained in clinical research, and a mentoring program. Participants will meet virtually on Zoom five times in May 2025 to learn from researchers in the field. Participants will also complete assignments and have opportunities to collaborate online with each other.

During the course, you will learn:

• What clinical research is – how it works and how it is relevant to you
• The purpose of, and best practices in, engaging in research
• How to develop Alzheimer’s disease-related research questions that are meaningful to adults with Down syndrome and caregivers
• Key scientific tools and concepts to better understand health research

The Alliance for Aging Research, NDSS, and LuMind IDSC value diverse voices and strive to be a place where inclusion lives. We encourage adults with Down syndrome and family caregivers of adults with Down syndrome to apply, including those of any race, color, religion, gender, gender identity or expression, sexual orientation, national origin, genetics, disability, age, or veteran status.

We are looking for adults or family caregivers who: 

• Are excited to learn about how individuals with Down syndrome and family caregivers can engage in the research process. NO prior knowledge or expertise is required!

• Can participate in five 2-hour online sessions. You do NOT need to be tech savvy; we will walk you through every step of the online process.

• Will complete homework prior to each session. Expect 5-6 hours of homework in total. NO grading, we promise!

The course will be led by a team of outstanding experts in the fields of Alzheimer’s disease research and care, who also have extensive experience working with adults with Down syndrome. Each “researcher teacher” will present to the wider class and will lead a smaller group in directed discussions.

Our team for Spring 2025 course includes:

Isabel Barroeta, M.D., Ph.D
Neurologist, Memory Unit at the Hospital de la Santa Creu i Sant Pau, Barcelona, Spain

Ann Cohen, Ph.D.
Tenured Associate Professor of Psychiatry at the University of Pittsburgh School of Medicine

Sigan Hartley, Ph.D.
Professor of Human Development and Family Studies and 100 Women Distinguished Chair of Human Ecology at the University of Wisconsin-Madison

Elizabeth Head, M.D.
Professor and Vice Chair of Research in the Department of Pathology and Laboratory Medicine at the University of California Irvine

Michael Rafii M.D., Ph.D
Medical Director of the Alzheimer’s Therapeutic Research Institute and Professor of Clinical Neurology at the Keck School of Medicine of the University of Southern California

Schedule 

• Session One: Thursday, May 1, 12 Noon to 2:00 pm ET
• Session Two: Tuesday, May 6, 12 Noon to 2:00 pm ET
• Session Three: Tuesday, May 13, 2024, 12 Noon to 2:00 pm ET
• Session Four: Thursday, May 15, 2024, 12 Noon to 2:00 pm ET
• Session Five: Monday, May 19, 2024, 12 Noon to 2:00 pm ET

Compensation

Participants who successfully complete the workshop will receive a stipend of $850. As alumni, our participants will have access to 150 people also trained on clinical research (some in dementia, some in other fields such as cardiology), be included in any webinars and additional trainings we provide for other course alumna, and receive our assistance with letters of recommendation and other shared information for opportunities in research, policy, and health education centered on improving outcomes in research and patient care.

How do I register? What should I do if I have questions?

1. The first step is to let us know you are interested! Please complete this short form, which also includes a section for questions.
2. After you complete the form, you’ll receive an email inviting you to a quick phone call with Beth Mathews-Bradshaw from Alliance for Aging Research. Keep a lookout for Beth’s message!
3. Beth will arrange a call and can answer questions at that time. The calls with Beth are informal and are conducted to ascertain that this training fits your needs.

INFORMATION WEBINAR and QUESTION SESSION
Join an upcoming webinar with the course organizers to learn more and ask questions about the process!
WEDNESDAY, DECEMBER 4 at 12 noon, ET

To register for the webinar, please contact Beth via email: [email protected]