The CJD Family Conference is in July

The CJD conference in Washington, DC in July will be attended by people from all over the globe and takes place from the 7th to the 9th with Capitol Hill visits set to take place on the 10th. For more information, please call the CJD Foundation at 1-800-659-1991. Registration is $150 and the conference takes place at the Washington Court Hotel.

Speakers include Dr. Pierluigi Gambetti, Dr. Robert G. Will, Dr. Claudio Soto, Dr. Gene Major, Dr. Richard Knight, Dr. Neil Cashman, Lt. Col. Terry Besch, Dr. David Kocisko, Dr. Michael Geschwind, Dr. James Sejvar, Don Simms, Dr. Muneto Ueda, Deanna Simpson RN, and more. Speakers will be representing the U.S., Canada, Japan, and the UK.

If you know of anyone who will be attending from Australia, please let me know! This blog is, after all, for networking.

As someone who has lost three family members (known) to this disease, I will be especially interested in hearing Don Simms speak about his son’s progress with pentosan polysulphate (PPS) treatment. I do not know if I carry the E200K gene, but must consider the treatment options available in the long run if I am to get this disease like my mother did. Though I wouldn’t favor PPS treatment if I were to fall ill today from CJD, I am interested in hearing more about what we do know about this drug. Maybe we can push for me research on PPS in both the UK and the U.S. Then maybe someday, it will be a consideration in my life.

I’ve been planning to attend the conference all year, but without a current full-time job, this is going to be understandably tricky. If I am able to attend, I will be interviewing as many people as possible for podcasts and articles to be posted here at CJDTalk.