Creutzfeldt-Jakob Disease Foundation

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2008 Family Conference by Marisa
October 11, 2007 02:51 PM

Sixth Annual CJD Foundation Family Conference

The Creutzfeldt-Jakob Disease Foundation cordially invites you to attend the Sixth Annual CJD Foundation Family Conference: CJD 2008, July 11-13 at the Washington Court Hotel, Washington, D.C. This year for the first time we are partnering with the National Prion Disease Pathology Surveillance Center and PrioNet Canada in an effort to expand the focus in many new directions. We feel that you, the families, will be the beneficiary of this expansion.

The highlights of the conference include:
˜ The opportunity to meet other families who have struggled or are still struggling with a CJD diagnosis

˜ The opportunity to hear about the latest prion disease research directly from the researchers

˜ The opportunity to participate in Capitol Hill advocacy visits

˜ The opportunity to hear about support organizations around the world

We want to encourage you to stay and participate in Capitol Hill advocacy visits Monday, July 14th. The Foundation sets up the appointments for you, provides training by a congressional staff person and equips you with materials to share. This is an exciting opportunity to meet with your congressional representatives to discuss CJD and the issues most important to all of us. You will gain a better understanding of how our government works and the true sense that together we make a difference. Judging from past evaluations, those who participate enjoy this unique opportunity.

We have enclosed a tri-fold which includes a registration form and list of speakers. The registration fee includes all conference sessions, a casual welcome reception Friday evening, continental breakfast and lunch on Saturday and Sunday and the banquet Saturday evening. Please mail or fax your registration and payment as soon as possible, we are expecting this year’s attendance to be the largest due to our new partnership.

This year we have added the opportunity for an individual or group to sponsor a meal or coffee break, see the tri-fold for further information.

Please note, you must make your hotel reservations separately. Reservations are on a first come first served basis for the special conference rate. Be sure to inform the Washington Court Hotel that you are with the CJD Foundation. If you choose a different hotel you will still need to register for the Conference with us.

We look forward to seeing you at this very special event and feel confident you will find the conference both valuable and healing.

Sincerely,

Florence Kranitz, President
Marisa Boarman, Associate Director

2008 Conference Registration Form

March 2008 Newsletter from Florence Kranitz by marisa
December 21, 2007 02:06 PM

Conference Information
Our Sixth Annual CJD Foundation Family Conference will be held, once again, at The Washington Court Hotel on Capitol Hill. The conference will be held July 11-13, 2008, and on Monday, July 14 we will arrange meetings with individual representatives on Capitol Hill for those who would like to participate.

We have an impressive list of presenters this year. For the first time we are partnering with the National Prion Disease Pathology Surveillance Center and PrioNet Canada to offer the first North American CJD Conference!

Please save the date! Registration forms and details will be mailed out at the beginning of April. We hope to see you there!

In order to make our conference as affordable as possible we will not be raising our registration fee. We are offering an opportunity for families to sponsor a coffee break, or a meal. Sponsors will be acknowledged by signage and mentioned in the conference binders. For further details or if you would like to sign up as a sponsor please contact Marisa at marisa@cjdfoundation.org or 1-800-659-1991.

Friday, July 11, 2008
Wine Reception - $1,000

Saturday, July 12, 2008
Breakfast - $2,000
Coffee Break - $500
Lunch - $3,000
Dinner - $5,000

Sunday, July 13, 2008
Breakfast - $2,000
Coffee Break - $500
Lunch - $3,000

GoodSearch
Hopefully you received our email detailing a small and simple way you can help The CJD Foundation through a free service called GoodSearch.com. Instead of using other search engines, you can use GoodSearch.com and we will receive a penny for each search you complete. I know this does not sound like a lot, but it will add up if we work together and spread the word to our friends and family. You can use it as your primary search engine or add it to your toolbar so you will not forget to use it. We are using it on our computers at the office and it works just like the Google or Yahoo search engines.

Washington Report from Florence
On Thursday and Friday, March 6th and 7th, Dr Gambetti and I visited Capitol Hill. Our focus was on human surveillance and the even more critical role it has now that we know “downer cows” were proven to have entered the food supply. On Friday afternoon we met with Ed Schafer, USDA Secretary, and some of his Under Secretaries. I’ve attached my report. My sense is that these meetings, at this time, held more potential for change because of the spotlight placed on the meat packers. We were invited to return to Washington for a meeting with the Labor HHS subcommittee.