March 2019

Dear Friends,

The Creutzfeldt-Jakob Disease Foundation and the National Prion Disease Pathology Surveillance Center cordially invite you to attend the 2019 CJD Foundation Family Conference to be held July 12-14 at the Washington Court Hotel, Washington, D.C. Capitol Hill visits will be scheduled for Monday, July 15.  

We hope you will join us this year, as we commemorate the 25th Anniversary of the founding of the CJD Foundation, for our annual conference.  As always, the agenda features an exceptional program of speakers and an opportunity to meet the inspirational community of scientists, volunteers, and advocates who are so dedicated to our shared cause.

Family Workshops: We will again launch the weekend with Sporadic and Genetic Prion Disease Family Workshops on Friday afternoon at 12:45 p.m., followed by the very popular Prion Disease Overview for families. Don’t miss these sessions, which give you the opportunity to ask questions of prion disease experts and share your thoughts with other families affected by either sporadic or genetic prion disease.  The full conference agenda will be posted on our website.

Advocacy Day: We encourage you to join us for the Capitol Hill advocacy visits on Monday. The CJD Foundation will provide advocacy training and background materials, and will schedule appointments with legislative aides in the offices of your senators and representatives. This is your chance to tell your personal story, educate your elected representatives, and draw attention to the issues that concern us most.

Registration: Space is limited.  To reserve your spot, mail or fax your registration form with payment as soon as possible.  You may also register online at

Sponsorships: If you can, consider helping to cover conference expenses by making a donation or by sponsoring a meal, binders, conference bag, flowers, or any of the other options described in the conference brochure. Registration fees cover just a portion of costs – your generous sponsorships and donations enable us to continue hosting this outstanding conference. Please call us if you have sponsorship questions.

Accommodations: Hotel reservations must be made separately with the Washington Court Hotel by calling 202.628.2100.  Our special conference rates are available on a first-come, first-served basis. To receive the conference rate, be sure to tell the Washington Court Hotel that you are with the CJD Foundation. If you stay outside the hotel, you are still required to register for the conference.

We look forward to seeing you at the 2019 conference! 

2019 CJD Foundation Family Conference Details

Conference Sessions

Friday Sessions  (beginning at 12:45)

  • Sporadic Prion Disease Workshop
  • Genetic Prion Disease Workshop
  • Prion Disease Overview
  • Bereavement Workshop
  • Welcome Reception

Saturday Speakers

  • Keynote Speaker: Robert G. Will, MD, FRCP(E)
  • Brian Appleby, MD, Director of NPDPSC
  • Allison Kraus, PhD*
  • Hermann Clemens Altmeppen, PhD*
  • David A. Harris, MD, PhD*
  • Carole Crozet, PhD (on behalf of Sylvain Lehmann, PhD*)
  • Leonardo Cortez, PhD*
  • Rodrigo Morales, PhD*
  • Moving Roundtables
  • Banquet

* 2019 CJD Foundation Research Grant Recipient

Sunday Sessions

  • CJD Foundation Report
  • Grants Program Update
  • National Prion Disease Pathology Surveillance Center Report
  • CDC Surveillance Report
  • CJD Foundation Questionnaire Report
  • CJD International Support Alliance
  • Advocacy Training
  • And More