Maria & Jose, John, Valorie, Walter & Rosa, Mark, Don & Rachel,
Esther & Marcel, Edward, Donald & Zee, Jeannie, Gordon,Patti
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.
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.
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.
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
· 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
· 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
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.
Codes are established that should make reimbursement for CyberKnife
treatment possible without dispute.
· 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
· 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.
· Will continue on a semi-annual basis.
· Zee will be responsible for the newsletter. Your help is needed to make
· 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 group decided they would like to continue meeting on a regular quarterly
· 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!
· 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.
· 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
· 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.
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.
will be a need for someone to take minutes of each meeting. Distribution
of these minutes is another topic to be discussed.
order to minimize the distribution costs, copies of the following
will be sent to only those who were unable to attend this meeting.
CPSG Contact List
List of Media Coverage
provided by Patti
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