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CyberKnife Patient Support Group

Meeting Minutes

Attendees: Maria & Jose, John, Valorie, Walter & Rosa, Mark, Don & Rachel, Esther & Marcel, Edward, Donald & Zee, Jeannie, Gordon,Patti and Kristine.

The meeting was chaired by Donald. For background, this group was the germination of an idea formed through conversations with Kristine, of Accuray, and Donald in an effort to provide education and support to other prospective CyberKnife patients. Because of their passion, the following events occurred.

Summary of Past Year by Donald
· CyberKnife Patient Reunion Dinner, July 13, 2001. For those unable to attend, Drs. Adler, Chang, and Gibbs provided the patients an update on the CyberKnife and its anticipated progress. However, the highlight of the evening was the patients who shared their stories of how they became aware of their condition, the CyberKnife, and their ultimate treatment experience. The CyberKnife Patient Support Group was formed from those who wished to be more involved in the effort to spread the word and share their experiences and support with others.
· The Mission Statement:
The CyberKnife Patient Support Group committed to helping others.
The CyberKnife Patient Support Group is a not for profit organization dedicated to supporting people whose lives have been or could be positively affected by the utilization of the CyberKnife Stereotactic Radiosurgery/Radiotherapy System. We strive to improve the quality of life of these patients by providing continuing education and support for themselves, family and friends. We inform, communicate and share our experiences and our lives with those facing or having faced this magnificent, non-invasive procedure.
· First official meeting of the CyberKnife Patient Support Group (hereafter referred to as CPSG), August 25, 2001. Next meeting was to have been 9/22; however, after 9/11, this was postponed.
· Initial CPSG Newsletter was generated and distributed.
· Two respective websites were generated for the group by Valorie and Zee as a proposed vehicle for further communication.

As you can see there were great strides made but there has been a significant time span since the last meeting, hence this urgent need to become re-established.

Accuray Update Provided by Kristine
· Update on the new CyberKnife and the differences between it and the one most of the patients have been treated with at Stanford. Virtually no difference from the patients viewpoint. The system is now faster so treatment takes less time, is still as conformal and accurate.
· Company perspective moving from a "Beta" situation of five sites into a true commercial enterprise with sales throughout the world. The updated locations are
Installations
· Stanford University Medical Center, California
· University of Pittsburgh Medical Center, Pennsylvania
· Cleveland Clinic Foundation, Ohio
· Newport Diagnostic Center, California
· University of Texas, Southwestern Medical Center, Texas
· Georgetown University Hospital, Washington, DC
· Konan St. Hill Hospital,Yamaguchi, Japan
· Osaka University Hospital, Osaka, Japan
· Okayama Kyokuto Hospital, Okayama, Japan
· Kumamoto Radiosurgery CyberKnife Center, Kumamoto, Japan
· Fujimoto Hospital, Miyazake, Japan
· Fukuoka CyberKnife Center, Fukuoka, Japan
· Kyoto Soseikai Hospital, Kyoto, Japan
· National Cheng Kung University, Tainan, Taiwan
Contracts
· Vicenza Hospital, Vicenza, Italy
· University of California at San Francisco Medical Center, California
· Norris Cancer Center at University of Southern California, California
· Fox Chase Cancer Center, Pennsylvania
· Boulder Neurological Associates, Colorado
· Illinois CyberTechnologies, Inc., Illinois
Letters of Intent
· Landmark Medical Center, Rhode Island
· Mount Sinai Hospital, New York
· Beth Israel Deaconess Medical Center, Massachusetts
· Sinai Baltimore Hospital, Maryland

Accuray is becoming more recognizable through the tremendous efforts of our Marketing Manager and PR consultant. A list of the coverage the CyberKnife has received this year was distributed and is attached for your reference. Copies of some of these videos and the new product CD were made available.

Insurance Codes are established that should make reimbursement for CyberKnife treatment possible without dispute.

Web Site
· Valorie and Zee provided information on their respective suggested web-site formats. A group decision elected to maintain the site generated by Valorie.
· The temporary website address is: www.angelfire.com/de2/degrendele/
This will change once a permanent site is arranged and browsers implemented.
Valorie to pursue the cost for a site without banners but
· It was suggested that the identity be shorted from the "CyberKnifepatientsupportgroup.org" to maybe "Cyberknifepatientgroup.org" to make it easier to access. Valorie will look into this and the cost to register.
· There were several key suggestions such as adding a chat room, bulletin board, guest book, links to CyberKnife sites, links to other support sites, mega tags, minimizing pictures so the download is shortened, and add more patient stories.
· Valorie will be responsible for keeping the information updated but she will rely on input from each of you to keep this a viable communication tool.
· Accuray will provide press releases and updates as warranted.
· For patient inquiries, there needs to be a way for questions to be responded to by the most knowledgeable individual for that particular question. Further discussion is needed for this issue.

Newsletter
· Will continue on a semi-annual basis.
· Zee will be responsible for the newsletter. Your help is needed to make it successful.
· Everyone is requested to provide their story and pictures by July 27th to Zee. They can be hand-written, typed, or electronic. Please see the attached Contact List for email or address information for Zee.
· Your suggestions will be most welcomed.
· There will be a review of the format and based on conversations between Donald and John, who has had experience with Medical Newsletters, the topics/headers will be defined and a format established.
· There will be an article focusing on a particular malformation treated by the CyberKnife each issue so everyone will have an opportunity to generate an article from their vast expertise.
· Accuray will provide input/updates.
· Accuray will provide copying and mailing services for distribution of the newsletter.

Future Meetings
· The group decided they would like to continue meeting on a regular quarterly basis.
· Meetings will be at Accuray’s 580 Pastoria location (behind the 570 Del Rey building), 10:00 am – 12:00 noon. If you need a map, please let me know.
· Next two meetings will be on Saturday, October 5th & Saturday, January 4th. Please mark your calendars!

Future Projects
· Fundraising will be an on-going issue. If you have suggestions, please relay to Donald or Valorie for future discussion.
· CPSG has a checking account opened with the initial $1,000 provided by Accuray. The balance to be provided by Donald at next meeting.
· John suggested we pursue a 501C3 for non-profit organizations which would allow CPSG to solicit donations/grants from key companies who would be provided the tax benefit.

Open Discussion
· At the conclusion of the meeting, Donald asked a few individuals to share their respective experience with the CyberKnife.
· Mark provided a brief history of his Acoustic Neuroma and how he came to pursue the CyberKnife as a treatment option. It was truly insightful.
As so many of the patients indicated, their own doctors were not familiar or willing to recommend the CyberKnife. They only know surgery! This is why the CPSG is so important.
· Don shared his story of a tumor on his brain stem that had to be removed by traditional surgery but they were unable to capture the entire tumor because of its proximity to the brain stem. Don had to have surgery because his tumor had displaced the brain stem. However, in order to eradicate the balance of the tumor, he elected to have Radiosurgery with the CyberKnife. Again, a very heart rendering story.
· Patient advocacy is extremely important. We need to focus and emphasize education of the patient population.
· Meeting ended at noon with a photo opportunity out at the Accuray sign.

The CPSG Contact List is included for your reference. Please feel free to contact Donald or Valorie with any input, suggestions, or to volunteer for the Newsletter and/or web site. Remember, this is an organization of volunteers, and the more people who volunteer, the less burden for everyone. Won’t you consider participating? Please contact Donald or Valorie for possible areas where your help is needed.

There will be a need for someone to take minutes of each meeting. Distribution of these minutes is another topic to be discussed.

In order to minimize the distribution costs, copies of the following will be sent to only those who were unable to attend this meeting.

Enclosures:
CPSG Contact List
Website
List of Media Coverage

Minutes provided by Patti

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