Second Call from the Governor's Office

Today I received a second call from Liz Ortiz, from Governor Chris Christie's office, about a possible proclamation for Neuroendocrine Cancer Awareness Day on November 10, 2011. She asked me to draft some language for the proclamation... below is my email and my proclamation attempt. Keep your fingers crossed!

From: Marlena Johnston

Sent: Friday, August 19, 2011 3:31 PM

To: Liz Ortiz

Subject: Proclamation Draft Language: Neuroendocrine Cancer Awareness Day (11/10/11)

Hi Liz,



Thank you so much for contacting me about the possibility of Governor Christie becoming the 17th governor to support the international initiative for increased awareness of neuroendocrine cancers (such as carcinoid). Presently, there is a global movement to recognize November 10th, 2011 as the second annual Worldwide Neuroendocrine Cancer Awareness Day (WNCAD), which you can learn more about at netcancerday.org.



After our conversation today, I looked at the proclamation language of the WNCAD initiative, as well as the proclamations for "NET Cancer Awareness Day" signed by governors Patrick (MA) and Bebe (LA), and crafted the below language for Governor Christie's approval. (Please note that the facts cited in the proclamation are agreed upon by the global NET community, and can be found at: http://netcancerday.org/resources/global-press-kit/.)

As I had mentioned in my earlier correspondence, I am a carcinoid cancer survivor, and a teacher at Paramus Catholic High School. Last year, our students gathered 792 signatures on 11/10/10 in support of the first ever WNCAD, and the students' efforts were featured in The Carcinoid Cancer Foundation's blog: https://carcinoid.wordpress.com/tag/paramus-catholic-high-school/.

The students of PC have already begun making plans to support the second annual WNCAD this November 10th, and the Governor's support would really mean a lot to them (and me). Please let me know if I can be of any further assistance.

Thanks again!

Marlena Johnston, NJ Resident

(my cancer story: channelingjackieo.blogspot.com)

Proclamation

Whereas Neuroendocrine tumors (NETs) often develop into cancer, including carcinoid cancer, that if left untreated can result in serious illness and death; and

Whereas According to the Carcinoid Cancer Foundation, Inc., approximately 11,000 people are diagnosed with carcinoid / NET cancers each year in the United States, including citizens from New Jersey; and

Whereas Over 90% of all NET patients are incorrectly diagnosed or initially treated for the wrong disease; and

Whereas From the initial onset of symptoms, the average time to proper diagnosis of NETs and related cancers exceeds five years; and

Whereas Through timely diagnosis and proper treatment, NET cancer patients can have significantly improved outcomes and quality of life;

Now, Therefore, I, Chris Christie, Governor of New Jersey, do hereby proclaim November 10, 2011 to be:

Neuroendocrine Cancer Awareness Day

Across the State, and I encourage patients, caregivers, health-care professionals, as well as the wider community, to join together to raise awareness about carcinoid / NET cancers, and the need for timely diagnosis and access to optimal treatment and care.

Call from the Governor's Office

After leaving school Thursday, I noticed a voice mail on my cell phone from an unknown number. After I played the message, I pulled into the nearest parking lot and replayed it.

The caller identified herself as "Liz" from Governor Christie's office, and politely requested that I return her call at my earliest convenience. I immediately called back, and to my great surprise - Liz picked up on the second ring.

She explained that she was following up on my email, asking the Governor to declare November 10th - NET Cancer Awareness Day in NJ. (See my Jan 21st blog post: "Ask Governor Chris Christie (NJ) to Support NET and Carcinoid Cancer Awareness")

She asked me if I could send her some proposed language for a Proclamation ... no promises of course; she was just looking into the matter. Below is the email I sent to her. I am excited at the possibility of Governor Christie joining the fight against NET cancers.
_______________________________________________________________

From: Marlena Johnston [mailto:marlenajohnston@hotmail.com]
Sent: Thursday, March 03, 2011 8:21 PM
To: Liz Ortiz
Subject: Proclamation Supporting Neuroendocrine Tumor (NET) Cancer Awareness

Dear Liz,

It was a pleasure speaking with you today about the possibility of Governor Chris Christie becoming the 17th United States governor to join the global campaign supporting neuroendocrine tumor (NET) cancer awareness.

The first Worldwide NET Cancer Awareness Day (WNCAD) was held on November 10, 2010, and was an international movement coordinated by carcinoid and neuroendocrine tumor cancer advocacy groups around the world, including: Australia, Bulgaria, Canada, Colombia, Czech Republic, Denmark, Germany, Japan, Netherlands, Norway, Poland, Singapore, Sweden, United Kingdom and United States. As part of the campaign, a Proclamation urging NET cancer awareness was created, and has since been signed online by more than 4,600 people on six continents, and in person by thousands more. (Read more about the campaign at www.netcancerday.org). I have attached a copy of the WNCAD Proclamation for your review. There are already plans for a second international WNCAD on November 10, 2011.

I was diagnosed with carcinoid cancer in April of 2010, and would have died if my neuroendocrine tumor wasn't "accidently" found during another surgery. My cancer went undiagnosed for at least 5 years - allowing it to metastasize - in large part because of the lack of education in the medical community about neuroendocrine tumors. As the WNCAD slogan states: "if you don't suspect it, you can't detect it." Therefore, I urge Governor Christie to issue a Proclamation declaring November 10th as NET Cancer Awareness Day in the State of New Jersey, or join Governor Deval Patrick of Massachusetts in declaring the entire month of November as NET Cancer Awareness Month.

Please do not hesitate to contact me if I can be of any further assistance. I'd appreciate it if you could confirm receipt of this email and the attachment - just to ensure I have the correct email address.

Sincerely,
Marlena Johnston

Ask Governor Chris Christie (NJ) to Support NET and Carcinoid Cancer Awareness

Today was another snow day, and I took the opportunity to grade essays, sleep-in past 4:30 am, and write an email to Governor Chris Christie (NJ) - asking that he join the other 16 US governors who have signed proclamations in support of NET and Carcinoid cancer awareness:

Dear Governor Chris Christie,

As a New Jersey resident and survivor of carcinoid cancer, I am writing to you in hopes that you will become the 17th governor to proclaim November 10th as Worldwide NET and Carcinoid Cancer Awareness Day.

Last April, at the age of 35, I was diagnosed with carcinoid cancer, which is a rare cancer caused by neroendocrine tumors. I was sick for over 5 years, but because carcinoid cancer is so rare, doctors didn't suspect it as the cause of my illness. When they finally did discover the neuroendocrine tumor in my appendix, it had grown so large that I had to have several lymph nodes and 1/2 of my colon removed at Sloan Kettering Cancer Center in order to stop any further spread of this deadly disease. (To learn more about my personal journey in fighting carcinoid, visit my blog: channelingjackieo.blogspot.com)

At the end of last school year, I made the difficult decision of sharing my carcinoid cancer diagnosis with the students, faculty and staff of Paramus Catholic High School (PC), where I teach 11th and 12th grade English. The outpouring of love and support from the PC community was overwhelming and humbling. I managed to convince my doctors to wait until the summer to schedule my surgery, so that I could finish out the school year. When I returned to the classroom this September, I was inspired and moved by the students' continued care and concern, and their commitment to raising awareness about this rare cancer.

November 10, 2010 was the first ever "Worldwide NET Cancer Awareness Day" (WNCAD), and the PC students designed their own mini-campaign to educate the school community about my rare cancer. In particular, students featured zebra stripes (carcinoid awareness ribbon colors) on the morning news broadcast; decorated bulletin boards with carcinoid information; and distributed carcinoid awareness pamphlets, pins, stickers and bracelets. Most impressively perhaps, they gathered 792 signatures for the WNCAD Proclamation (which can be found at www.netcancerday.org). In fact, the Paramus Catholic students' efforts were featured by the Carcinoid Cancer Foundation's blog (www.carcioniod.org and carcinoid.wordpress.com).

Won't you please join in the campaign to increase awareness about NET cancers and join 16 other governors in declaring November 10th as Neurendocrine and Carcinoid Cancer Awareness Day?

Thank you,
Marlena Johnston

16 Governors Proclaim November 10th as Worldwide NET and Carcinoid Cancer Awareness Day: Deval Patrick (Massachusetts), Arnold Schwarzenegger (California), Bobby Jindal (Louisiana), Brian Scweitzer (Montana), Pat Quinn (Illinois), Dave Heineman (Nebraska), Haley Barbour (Mississippi), Chet Culver (Iowa), Mark Parkinson (Kansas), Brad Henry (Oklahoma), Mike Beebe (Arkansas), Jennifer Granholm (Michigan), David Paterson (New York), M. Jodi Rell (Connecticut), Jay Nixon (Missouri), Jim Doyle (Wisconsin).

_______________________________________________________

If you would like to help convince Chris Christie to issue a WNCAD proclamation, simply copy and past the below email and submit it online HERE.

Dear Governor Christie,

One of your constituents - a teacher at Paramus Catholic High School and carcinoid cancer survivor, Marlena Johnston - recently requested your support in the campaign to raise awareness for neuroendocrine tumors and carcinoid cancers. I support her in her efforts, and respectfully ask that you join the governors of: Massachusetts, California, Louisiana, Montana, Illinois, Nebraska, Mississippi, Iowa, Kansas, Oklahoma, Arkansas, Michigan, New York, Connecticut, Missouri and Wisconsin in proclaiming November 10th as "Worldwide NET Cancer Awareness Day".

Thank you,
(your name)

PC Students Join the Fight Against Carcinoid Cancer

PC Students Advocate for Carcinoid Cancer Awareness

Last year, I made the difficult decision of sharing my Carcinoid cancer diagnosis with the students, faculty and staff of Paramus Catholic High School (PC), where I teach 11th and 12th grade English. Since then, the outpouring of care and concern from the PC community has been overwhelming; and when I mentioned that this year was the first ever Worldwide NET Cancer Awareness Day (WNCAD), my students were eager to advocate for an increased awareness of this rare disease. Below are just a few of the ways that PC joined the fight against Carcinoid cancer:

Paladin News Network Anchors

Every morning, the students, faculty and staff of Paramus Catholic High School tune into a live broadcast over Paladin News Network (PNN) for prayer, the pledge, and announcements. During the month of November, the students of PNN decided to help raise awareness about neuroendocrine tumors by delivering their telecast in front of a greenscreen featuring zebra stripes and a Carcinoid Cancer Awareness logo.

Paladin Awareness Cancer Team Table

On November 10th, the students of PACT - PC's cancer awareness club - set up a table outside of the cafeteria to distribute information about NET cancers. They also created and administered a quiz on Carcinoid cancer, which over 300 students took in order to win prizes such as zebra striped pins, stickers, and bracelets. PACT also decorated their bulletin board with zebras and facts about Carcinoid cancer.

792 Signatures: WNCAD Proclamation

In addition to student-sponsored advocacy, on November 10th my colleagues in the English department took a break from vocabulary, grammar, composition, and literature to talk about my story and encourage students to sign the WNCAD Proclamation, which acknowledges the need for increased awareness about NET cancers and better access to treatment for Carcinoid cancer patients. Because of their efforts, we gathered 792 signatures in a single day.

Our school's mascot, a Paladin, is a knight of uncommon valor and virtue who fights injustices in the world - I'd say that the students and faculty of PC have certainly lived up to the Paladin legend through their incredible efforts in supporting the Carcinoid cancer community.

The Wait is OVER: WNCAD is Here!

visit: http://netcancerday.org

What is WNCAD you ask? Only the first ever Worldwide NET Cancer Awareness Day (Nov 10th). Wear zebra print (or at least black and white) tomorrow to show your support for the Carcinoid Cancer community.

"Call it a clan, call it a network, call it a tribe, call it a family. Whatever you call it, whoever you are, you need one." ~Jane Howard