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!

Friday, June 1, 2018 - 9:00am

Rescheduled for June, date to be determined.

Monday, June 4, 2018 - 5:00pm

5 to 7:30 p.m.

5 to 5:30 p.m., Casual Reception
5:30 to 7:30 p.m., Question & Answer Session

St. Louis Union Station Hotel, 1820 Market Street, St. Louis, MO 63103

With:

  • Dr. Brian Appleby, Medical Director, CJD Foundation, and Director, National Prion Disease Pathology Surveillance Center (NPDPSC)
  • Lori Nusbaum, Program Director, CJD Foundation
  • Danielle Jordan, NPDPSC

Family workshops are open to all families affected by a prion disease and are designed to provide support, education, and the opportunity for open dialogue in a secure forum. Please join us! Register by Friday, June 1, to help@cjdfoundation.org or call us at 1-800-659-1991.

Sponsored in part by The Centers for Disease Control and Prevention 
and a generous donation by Steve Nivens, in memory of his wife Stephanie

Monday, June 4, 2018 - 6:00pm

This group meets one Monday each month in Manhattan.
Upcoming meetings: Sept. 17, Oct. 15, Nov. 12 and Dec. 10!

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

Wednesday, June 6, 2018 - 8:00pm

A telephone support group for families affected by Gerstmann-Sträussler-Scheinker Disease, including caregivers, family members, and those who are mutation positive or at risk.  The call begins at 8 p.m. Eastern/5 p.m. Pacific.
To register, email help@CJDFoundation.org

Sunday, June 10, 2018 - 9:00am

You're invited to the 2nd Annual Hope for CJD Walk on June 10, 2018, at Pine Banks Park (1087 Main St., Malden, MA 02148)

Sunday, June 10, 2018 - 9:00am

Registration start time: 9 a.m.
Walk start time: 10 a.m.

Tuesday, June 12, 2018 - 7:00pm

Join us for this teleconference support group with Dr. Brian Appleby, Medical Director, CJD Foundation, and Director, National Prion Disease Pathology Surveillance Center, Cleveland, Ohio.

This group is open to all families affected by prion disease and is designed to provide support, education and the opportunity for open dialogue in a secure forum.

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

Friday, July 13, 2018 - 9:00am

Please join us for the 2018 CJD Foundation Family Conference, July 13 to 15 (Advocacy Day, July 16), in Washington, D.C.

For more information, call 1-800-659-1991 or email us at help@cjdfoundation.org.

Monday, July 16, 2018 - 9:00am

While we are in Washington, D.C., for our CJD Foundation Family Conference, Monday is devoted to visiting state representatives on Capitol Hill.

We set up the appointments for those families wishing to participate and provide advocacy training on Sunday afternoon. This is a unique opportunity for families to tell their stories to their elected representatives and to ask for financial support for prion disease research and for the strengthening of food safety policies.

For more information, call 1-800-659-1991 or email us at help@cjdfoundation.org.

Monday, September 17, 2018 - 6:00pm

This group meets one Monday each month in Manhattan.
Upcoming meetings: Oct. 15, Nov. 12 and Dec. 10!

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

Saturday, October 6, 2018 - 9:00am

Our 4th annual Strides for CJD event is scheduled for October 6, 2018 (October 7 or 13 in some locations). Strides for CJD is a series of walk/run events in communities across the U.S. Families and supporters of those affected by prion disease gather to raise awareness, support each other, and raise funds for vital programs.

COMING SOON: Watch this website for a list of Strides for CJD 2018 locations.

If you don't live near those locations, you can register to run/walk in your hometown as an "Individual or Small Group."

For more information, visit https://cjdfoundation.org/strides

Monday, October 15, 2018 - 6:00pm

This group meets one Monday each month in Manhattan.
Upcoming meetings: Nov. 12 and Dec. 10!

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

Monday, November 12, 2018 - 9:00am

Let's renew our determination, not only to honor our loved ones, but also to raise awareness.

Take a moment to educate others.
​Post on social media and educate friends and neighbors.
Proudly wear purple to show your support!

YOU have the knowledge to bring awareness to others. Together we can make a difference.

Monday, November 12, 2018 - 6:00pm

This group meets one Monday each month in Manhattan.
Upcoming meeting: Dec. 10

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

Monday, December 10, 2018 - 6:00pm

This group meets one Monday each month in Manhattan.
Watch this website for info on 2019 dates!

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

Thursday, February 28, 2019 - 9:00am

Today is Rare Disease Day!

Those of us affected by CJD remember and miss our loved ones every day. But today, Rare Disease Day, reminds us to join with others around the world to honor the memory of our loved ones, and to advocate for global awareness and education. 

Please share this message with your friends and families. You have the knowledge to educate others. Together we can raise awareness of prion disease and make a difference!

FIVE ways to commemorate Rare Disease Day:

Friday, July 12, 2019 - 9:00am

Please join us for the 2019 CJD Foundation Family Conference, July 12 to 14 (Advocacy Day, July 15), in Washington, D.C.

For more information, call 1-800-659-1991 or email us at help@cjdfoundation.org.