Coffee & Conversation: February 8th in Harrisburg

Happy New Year!

We are starting off the New Year with a Conversation and Coffee at the Linglestown St. Thomas Roasters (5951 Linglestown Rd, Harrisburg). Held from 2 - 4 PM on Sunday, February 8th, this event provides a relaxed setting to talk with other patients about living with the challenge of carcinoid cancer and related Neuroendocrine Cancers.

Also, please see our 2009 calendar of events posted at PCCAN.net. You will see that we've added some Coffee & Conversations in a number of new locations around the state. Please contact me if you are interested in participating and if you'd like to arrange one near you.

Teresa

Governor Rendell & Awareness Opportunity

What I had previously referred to as a press conference with Governor Rendell turned out to be the taping of the WITF-PBS show Smart Talk with Governor Rendell as the guest. David Botero, along with Kevin Gibson (you’ll remember them both from the Hope in Handball fundraiser last year) were instrumental in orchestrating our presence at the taping. David and Kevin along with Lucille, Vicki & Rob, Jeff and I were members of the audience.

Although we were unable to make our presence known in the show, we were able to talk to many of the WITF staff, other members of the audience and pass out information, pins, and bracelets. Several of us were able to have brief conversations with Governor Rendell and give him the material as well. Hopefully we have planted a seed that will grow into even greater opportunities for creating awareness about carcinoid/NET cancers.

Many thanks to David and Kevin for their continued efforts to create awareness and bring attention to our cause and to Lucille, Vicki & Rob, and Jeff for being willing to join us with just a half days notice.

Tragic Event Creates Awareness Opportunity in the Media

The state of Pennsylvania is morning the loss of the Lt. Governor, Catherine Baker Knoll. It is well known that her death was the result of complications from treatment of a neuroendocrine cancer, although as far as I am aware the specific type of neuroendocrine has not been reported. While being respectful of Baker Knoll’s family’s wishes to keep the specifics of her disease private and being respectful of the fact that they are mourning the loss of a loved one, we can use this sad occasion as an opportunity to create awareness of carcinoid/NET cancers.

Please join me in efforts to bring awareness of carcinoid/NET cancers and the need for proper treatment diagnosis and monitoring by bringing attention to any misinformation you see or hear and using it as a catalyst for spreading accurate information. This morning I came across a news article, prompted by the death of Baker Knoll that presented inaccurate information about carcinoid/NETs, including misinformation quoted by a doctor. I wrote to the reporter, bringing the misinformation to her attention and expressing that it is because of such information that the seriousness of carcinoid/NET cancers are dismissed and that some patients suffer unnecessarily and die prematurely.

If you come across information that is incorrect but don’t personally want to respond, bring it to the list’s attention so someone else can. If you like to write, consider writing a letter to the editor of your local paper. If in your letter you reference an article about Baker Knoll’s death that was already run you improve your chances of being published. Check the paper for the guidelines about submitting letters. (And, if you are like me you may need to curb the urge to express your anger about the situation since the information will be better received if it comes through in a kind tone.)

We as patients can make a difference, not only for ourselves but also for the next generation of patients diagnosed with a carcinoid/NET cancer. Let’s seize the opportunities to education the public and medical community—even if it is one doctor or one person at a time, it is worth it if it helps one person be diagnosed earlier or treated properly.

PCCAN’s 5th ANNIVERSARY MEETING

Sunday, November 9, 2008

2:00—4:00 pm
At Penn State Hershey Medical Center

Conference Room A (at the rear of the cafeteria dining room)

Please join us for the video presentation*:

Understanding Carcinoid:

The Disease, Diagnosis, Management, And Biochemical Control

with Nancy M. Gardner, PhD, ARNP-BC

Join us following the meeting for refreshments and help celebrate our first five years of supporting, educating & advocating.

Please RSVP with Teresa by Nov. 4th
Email: CarcinoidSupport@juno.com
Phone: 717-.576.5095
More information can be found at our website: www.PCCAN.net

*courtesy of the Carcinoid Cancer Awareness Network

Nov. 9, PCCAN Meeting

Reserve Sunday, November 9th for the next PCCAN meeting! It will be held from 2 - 4:00 at Hershey Medical Center in conference room A which is at the rear of the cafeteria. The agenda will soon be posted, meanwhile mark your calendar.

The Zebra Walk

The Zebra Walk on October 4th at the Philadelphia Zoo in memory of Deb Kilmartin was a memorable event. Participants wore t-shirts donated by the Carcinoid Cancer Foundation and seeing Deb's family surrounded by a crowd in zebra t-shirts was inspiring. We were able to see Suzi, the zebra adopted by the DVCC, and take a picture with her, though she wasn't very cooperative. Check out photos from the event.

Thanks to Suzi Garber for all her time, expense, and effort in organizing this spectacular event!

PCCAN.net has technical difficulties

You may have noticed that the PCCAN website is sorely outdated. We are having some technical difficulties which we hope to be resolved shortly.

Any PCCAN or carcinoid related questions can be directed to
Teresa at 717-576-5095 or CarcinoidSupport@juno.com.

PCCAN's Annual Picnic Resumes!

We would be delighted if you would join us on Saturday, July 19th from 4 to 7pm as PCCAN’s annual picnic resumes!

Grilled chicken and beverages will be provided. You may bring a dish to share if you wish.

The picnic is the Linglestown/Harrisburg area and will be moved indoors if needed due to rain or heat.

Please contact Teresa to RSVP and for directions.
www. PCCAN.net
CarcinoidSupport@juno.com
717-576-5095