2026 CJD Foundation Family Conference Evaluation |
| Thank you for attending the CJD Foundation Family Conference. Your feedback is very important to us. Please take a few minutes to fill out this evaluation form.
If you did not attend a session, please skip it. |
Venue and Resources Ratings |
* Registration and Check-In
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Attendee Portal (Online Resources)
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Store (Products and Inventory)
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Comments on Venue and Resources
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Genetic Prion Disease Workshop Part 1, Brian Appleby; MD; Michael D. Geschwind, MD, PhD; Eric Minikel, PhD; Krista Savage, MS, CGC, Amanda Kalinsky, RN, BSN
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Genetic Prion disease Workshop Part 2, Debbie Yobs and Panel
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Sporadic Prion Disease Meeting, Brian Appleby, MD and Lori Nusbaum
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Prion Disease Basics: Clinical, Brian Appleby, MD
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Prion Research Basics: Research, Joel Watts, PhD
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Bereavement Workshop, Tessa Garcia McEwen, AM, LCSW, DCCS, CDP and Danielle Jordan
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Comments on Friday Programs
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Keynote Address: Why There Is Reason to be Moore Hopeful About the Field of Prion Disease, Brian Appleby, MD
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Research Grant Recipient Report Panels |
Group A: Moderator: Jason Bartz, PhD
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Refined transgenetic approaches to investigate selective adaptation of human prions during intracranial and peripheral transmissions, Alyssa Block, PhD (Fellowship)
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Characterization of synaptic abnormalities in iPSC-derived neurons from E200K carriers, Jose Andres Alepuz Guillen, PhD (Fellowship)
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Engineering human cells to propagate fluorescent prions for live monitoring of prion infection and high-resolution in situ prion structure determination, Ellie Hanzi
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Engineered biosensors for improved prion detection, Joel Watts, PhD
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Higher-resolution visualization of prion fibrils in neurons and extracellular vesicles using state-of-the-art Cryo-TEM and FIB-SEM imaging, Jakub Soukup, PhD (virtual)
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Research Grant Recipient Report, Group A Debrief
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Group B Moderator: Joel Watts, PhD
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Assessing retinal function as a potential early biomarker for Creutzfeldt-Jakob Disease (CJD), Pei Ying Lee, BOptom, PhD
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Assessing efficacy of a PrP-lowering Molecular Gate as a therapeutic for prion disease, Nina Oberbeck, PhD
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Multi-center assessment of olfactory swab procedure performed by non-otolaryngologists for improving and simplifying human prion disease diagnosis, Gianluigi Zanusso, MD, PhD
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Investigating prion protein seeding activity in non-prion disease dementia, Ignazio Cali, PhD (virtual)
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Research Grant Recipient Report, Group B Debrief
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Teleneurology Assessment Program for CJD (TAPCJD), Brian Appleby, MD
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Comments on Saturday Programs
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CJD Foundation Report: Programs, Finance, and Strides for CJD, Stuart Yaffa, Jacob Schwister, and Lori Nusbaum
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CJD Foundation Grants Program, Debbie Yobs and Joel Watts, PhD
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National Prion Disease Pathology Surveillance Center Panel, Brian Appleby, MD; Eriton Cunha, PhD; Gabriella DelPrete; Danielle Jordan; Keisi Kotobelli; Liam Wissinger
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2026 Centers for Disease Control and Prevention Report, Ryan Maddox, PhD
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CJD Foundation Family Panel: “My Story, My Mission” Moderator: Debbie Yobs, Panel: Nikki Bland, Denise Chainey, Jeanne Cole, Shannon Romano, Mike Vitanza
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Drug Development Panel, Moderator: Brian Appleby, MD; Kiyoshi Arita, MSc; Andreja Avbersek, MD; Kathy Meyer, MPH, PhD, DABT; Eric Minikel, PhD; Nina Oberbeck; PhD; Rob Pulido, PhD
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Moving Roundtables with Drug Development Panel
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Comments on Sunday Programs
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Please rate how much of a factor each of the following was in choosing to attend Conference, 5 meaning it was a significant factor in choosing to attend and 1 meaning it was not a significant factor in choosing to attend. |
Location
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Speakers/Agenda
Not Significant
Significant
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Cost
Not Significant
Significant
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Were there any other factors that impacted your decision to attend Conference? Please explain.
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If location factored into your decision to attend Conference, please explain.
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If speakers or agenda, which factored into your decision to attend Conference? Please explain.
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Are you willing to participate in a 5 minute interview about your conference experience?
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