Upcoming Events

Click here for our Calendar of Events.

From our monthly in-person Support Group to our annual Family Conference and Strides for CJD event, you'll find everything you need here for CJD and prion disease education, advocacy, fundraising and support!

If you are hosting a Family Fundraiser to help the CJD Foundation fund education, research and family support programs, send your event info to us at help@cjdfoundation.org. We'll post it here and in our new e-newsletter!

If you want to start your own fundraising page, click here.

Monday, June 1, 2020 - 6:00pm

This group meets one Monday each month in Manhattan, from 6 to 8 p.m.

Advance registration is required; email Help@CJDFoundation.org.

Wednesday, June 3, 2020 - 7:00pm

This group is full. To join the waiting list for the next Bereavement series, please contact us at Help@CJDFoundation.org or 1-800-659-1991.

Tuesday, June 9, 2020 - 7:00pm

Families who receive a prion disease diagnosis often have many questions about the diagnosis and their next steps. They must quickly determine how to care for the patient, and where.

Join this virtual teleconference on Tuesday, June 9 at 7 p.m. ET with Brian Appleby, MD, Medical Director, CJD Foundation, and Director, National Prion Disease Pathology Surveillance Center, and Lauren Somple, MSW, LISW-S, Clinical Social Worker, University Hospitals Foley Elder Health Center of Cleveland, to hear more about:

  • Understanding the CJD diagnosis
  • Developing a care plan
  • What hospice can provide to support the patient and family
  • How to apply for SSDI
  • What else to consider after receiving a diagnosis

To register and receive dial-in instructions and a participant code, email help@cjdfoundation.org or call 1-800-659-1991.

Wednesday, June 10, 2020 - 7:00pm

This group is full. To join the waiting list for the next Bereavement series, please contact us at Help@CJDFoundation.org or 1-800-659-1991.

Tuesday, June 16, 2020 - 7:00pm

If you are currently caring for a loved one with CJD/Prion Disease, please join us for a Caregivers’ Support Group by phone.

Support Group discussion will be led by several family members who have cared for a loved one in the past.  Participants have the opportunity to share their questions and concerns and gain ideas and insights from the group.  Only CURRENT caregivers may register.

To register, please contact our Helpline at 800-659-1991.  We will share information and referrals with you, then qualify and register you for the caregivers group.

Wednesday, June 17, 2020 - 7:00pm

This group is full. To join the waiting list for the next Bereavement series, please contact us at Help@CJDFoundation.org or 1-800-659-1991.

Wednesday, June 17, 2020 - 8:00pm

Time: 8:00 P.M. ET / 5:00 P.M. PT

For families affected by Gerstmann-Sträussler-Scheinker (GSS) Disease.

Friday, July 10, 2020 - 8:00am

The CJD Foundation's Family Conference, held annually in Washington, D.C., brings together prion disease experts and families affected by prion disease.

Monday, September 14, 2020 - 6:00pm

This group meets one Monday each month in Manhattan, from 6 to 8 p.m.

Advance registration is required; email Help@CJDFoundation.org.

Tuesday, September 15, 2020 - 7:00pm

If you are currently caring for a loved one with CJD/Prion Disease, please join us for a Caregivers’ Support Group by phone.

Support Group discussion will be led by several family members who have cared for a loved one in the past.  Participants have the opportunity to share their questions and concerns and gain ideas and insights from the group.  Only CURRENT caregivers may register.

To register, please contact our Helpline at 800-659-1991.  We will share information and referrals with you, then qualify and register you for the caregivers group.

Saturday, October 3, 2020 - 9:00am

Strides for CJD is an annual walk/run to raise awareness of Creutzfeldt-Jakob Disease (CJD), a rare neurodegenerative disease that has no treatment or cure. For more information, visit http://www.strides4cjd.com.

Sunday, October 4, 2020 - 9:00am

Strides for CJD is an annual walk/run to raise awareness of Creutzfeldt-Jakob Disease (CJD), a rare neurodegenerative disease that has no treatment or cure. For more information, visit http://www.strides4cjd.com.

Monday, October 5, 2020 - 6:00pm

This group meets one Monday each month in Manhattan, from 6 to 8 p.m.

Advance registration is required; email Help@CJDFoundation.org.

Saturday, October 10, 2020 - 9:00am

Strides for CJD is an annual walk/run to raise awareness of Creutzfeldt-Jakob Disease (CJD), a rare neurodegenerative disease that has no treatment or cure. For more information, visit http://www.strides4cjd.com.

Sunday, October 11, 2020 - 9:00am

Strides for CJD is an annual walk/run to raise awareness of Creutzfeldt-Jakob Disease (CJD), a rare neurodegenerative disease that has no treatment or cure. For more information, visit http://www.strides4cjd.com.

Monday, November 2, 2020 - 6:00pm

This group meets one Monday each month in Manhattan, from 6 to 8 p.m.

Advance registration is required; email Help@CJDFoundation.org.

Monday, December 7, 2020 - 6:00pm

This group meets one Monday each month in Manhattan, from 6 to 8 p.m.

Advance registration is required; email Help@CJDFoundation.org.

Friday, July 16, 2021 - 8:00am

The CJD Foundation's Family Conference, held annually in Washington, D.C., brings together prion disease experts and families affected by prion disease.