Esophageal Cancer Awareness Month

JaneE2366
JaneE2366 Member Posts: 289 Member
edited March 2014 in Esophageal Cancer #1
Just got an email from the Governor Crist's office....FL had declared
April National Esophageal Cancer Awareness month!!

Jane

Comments

  • rnic22
    rnic22 Member Posts: 9
    #2
    Esophageal Cancer Awareness Month
    Tennessee has done this also! I am so excited and know my Dad would be so proud. Praying for all the people touched by Esophageal Cancer.
    Rolinda
  • judyloo
    judyloo Member Posts: 40
    #3
    rnic22 said:

    Esophageal Cancer Awareness Month
    Tennessee has done this also! I am so excited and know my Dad would be so proud. Praying for all the people touched by Esophageal Cancer.
    Rolinda

    National Esophageal Cancer Awareness month!!
    How did this end up on the governors desk? What steps need to be taken to make this nation wide? My husband was DX 12/07 and is doing fine right now. He has often said however, not enuf is being done about research, TX, publicity about EC! This would be a blessing to EC survivors and families.


    Judy
  • JaneE2366
    JaneE2366 Member Posts: 289 Member
    #4
    judyloo said:

    National Esophageal Cancer Awareness month!!
    How did this end up on the governors desk? What steps need to be taken to make this nation wide? My husband was DX 12/07 and is doing fine right now. He has often said however, not enuf is being done about research, TX, publicity about EC! This would be a blessing to EC survivors and families.


    Judy

    it was easy
    All I did was send an email to the governor....it was easy...thanks to Kim.
    I am pretty sure she posted the info on this site....she also posted it on Facebook's Esophageal Cancer Awareness site.
    Jane
  • unclaw2002
    unclaw2002 Member Posts: 599
    #5
    JaneE2366 said:

    it was easy
    All I did was send an email to the governor....it was easy...thanks to Kim.
    I am pretty sure she posted the info on this site....she also posted it on Facebook's Esophageal Cancer Awareness site.
    Jane

    That is great -- we have
    That is great -- we have Florida, Maryland, Kentucky, Tennesee and Delaware so far. Any others I left off? Last year it was only Maryland. Now we all need to lobby the feds and get it declared for the US.

    Cindy
  • rnic22
    rnic22 Member Posts: 9
    #6
    judyloo said:

    National Esophageal Cancer Awareness month!!
    How did this end up on the governors desk? What steps need to be taken to make this nation wide? My husband was DX 12/07 and is doing fine right now. He has often said however, not enuf is being done about research, TX, publicity about EC! This would be a blessing to EC survivors and families.


    Judy

    EC awareness
    Judy,
    If you want to send me an email at rnichols1960@gmail.com I will explain how I did this. I tried to send you a private message here but it will not accept it.
    Rolinda
  • K_ann1015
    K_ann1015 Member Posts: 500
    #7
    thanks so much everyone!!! I
    thanks so much everyone!!! I am in the process of adding the sates up and will let you know---some folks are not on here but are on facebook-----small steps are what will lead us gradually to bugger steps---I am out of toen visiting my dad---my hear is so warmed---although he s very thin and tires easily (just finished 1st round of clean up chemo-) we are all glad to BE ABLE to be together...

    It is easy to contact you governor---ANY MONTH can be ESOPHAGEAL ca awareness month---I can let you know how... just ask

    I will wrote more later
    Kim
  • mom2dancergirls
    mom2dancergirls Member Posts: 1
    #8
    Florida EC Awareness Month
    Jane-

    I'm Mindy Mintz Mordecai of ECAN Esophageal Cancer Action Network and I'd like to give you credit on our website for getting Florida to name the month. Can you give me a little background about you - your name, your reason for caring about EC Awareness and anything else you would like to add?

    Thanks!
  • JaneE2366
    JaneE2366 Member Posts: 289 Member
    #9
    mom2dancergirls said:

    Florida EC Awareness Month
    Jane-

    I'm Mindy Mintz Mordecai of ECAN Esophageal Cancer Action Network and I'd like to give you credit on our website for getting Florida to name the month. Can you give me a little background about you - your name, your reason for caring about EC Awareness and anything else you would like to add?

    Thanks!

    Hi Mindy,
    Sure, I can give you my info. Just so happens I got the proclamation in the mail today.
    My name is Jane Evans and my husband and I retired to FL from NJ 3 years ago. The reason for caring about EC awareness.....my husband, Charlie, was dx with stage iv EC 1 year ago. He had absolutely no symptoms of EC at all....dealt with heartburn from time to time....never had reflux, and never had trouble swallowing. Needless to say we were floored when we received the diagnosis. It worries me that so many treat their heartburn and reflux with the OTC meds and ignore what could be live saving symptoms. On top of that, I understand insurance companies will not cover a routine endoscopy. We had many friends go to the dr after Charlie was diagnosed and they all had to tell the dr they had trouble swallowing....one was told he had Barretts which is the precursor to EC. Just don't understand why endoscopies don't become as routine as colonoscopies. If you click on my name to the left of this posting you can read our entire story. Right now Charlie is doing extremely well considering his diagnosis. Since he is stage iv and not a candidate for surgery or radiation, we opted for very agressive chemo. It worked...it got him into remission. He is now on an oral chemo which he takes for 2 weeks and then is off 1 week. His dr (God love him!) also has him on Herceptin. He goes for an infusion every 3 weeks. Insurance company will not cover that either but our dr got the drug company to provide it. It has not been approved for EC but is showing great results in treating gastric cancers.
    That is our story.....and I cannot take all the credit for getting this proclamation. If others on this site hadn't started the movement, I would never have thought of it. So I thank them as well.
    Jane
  • For Woody
    For Woody Member Posts: 1
    #10
    Esophageal Cancer Month
    Does anyone know if there is a month for the State of Indiana? My husband is an esophageal cancer survivor. It's great that all this stuff happens this time of year for Breast Cancer but we'd like to see more awareness for Esophageal Cancer.
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #11
    mom2dancergirls said:

    Florida EC Awareness Month
    Jane-

    I'm Mindy Mintz Mordecai of ECAN Esophageal Cancer Action Network and I'd like to give you credit on our website for getting Florida to name the month. Can you give me a little background about you - your name, your reason for caring about EC Awareness and anything else you would like to add?

    Thanks!

    Hello Mindy
    Thank you for
    Hello Mindy
    Thank you for posting to Jane. My dad passed away from esophageal cancer with mets to the liver in March of this year. I would love to make an EC Awareness Month for the state of Virginia as well. Can you help me and others find out how to do this? Thank you.
    Tina in Va
  • K_ann1015
    K_ann1015 Member Posts: 500
    #12
    Tina Blondek said:

    Hello Mindy
    Thank you for
    Hello Mindy
    Thank you for posting to Jane. My dad passed away from esophageal cancer with mets to the liver in March of this year. I would love to make an EC Awareness Month for the state of Virginia as well. Can you help me and others find out how to do this? Thank you.
    Tina in Va

    Info to pursue EC Awareness & Prevention Month in your state

    Hi Tina,

    I contacted KY's Governor and he declared April 2010 EC Awareness & Prevention Month. Many others used these suggestions & the draft language that I used. Any one can address this in their state as well. I think contacting Governor's at this time is more effective and more likely to lead to success for many reasons. One is because of the health care reform looming over the Senate & House. (I did contact our state's legislators-but they declined to support this at the time.)


    1) contact your governors office through their website mail and make your request. (contact info below) I simply, briefly, but passionately told why I thought it was important, told about my connection to Esophageal Cancer and stressed that it would benefit ALL of my state’s constituents—how can they say no???. :) (send me a private email if you would like to see what I wrote to my governor---my EC "story")

    Here is a website that lists ALL the states legislators & governors contact info:
    http://conservativeusa.org/mega-cong.htm
    (It looks like when you click on the gov. link you get an email that you fill in)

    2) I think overlapping with email – fax & phone call is a good idea. They usually want to help their constituents

    3) When I heard back from the governor’s representative, he asked for “draft language”. I can post that as well or email it.--just send me a private message with your email.

    I don't to make this post too long---but if it does anything to shift some monies to EC research / prevention & treatment---then I'll do it!

    My dad is post (stage 3) EC surgery (12/09) at Duke. He is doing very well, but very thin. He has follow up scans later this month. His younger brother Dx'd with stage 4 EC 3/20 passed away after only 3 months. My 12 year old daughter has reflux---so this disease is very personal to me. I want to make a difference.

    Kim
  • K_ann1015
    K_ann1015 Member Posts: 500
    #13
    For Woody said:

    Esophageal Cancer Month
    Does anyone know if there is a month for the State of Indiana? My husband is an esophageal cancer survivor. It's great that all this stuff happens this time of year for Breast Cancer but we'd like to see more awareness for Esophageal Cancer.

    EC Awareness info
    HI Woody. I don't think Indiana proclaimed April EC Awareness and prevention month, but I am not sure. I live in KY---please see post above to Tine ---you can approach your governor's office like I did in KY and attempt to raise awareness in your state too! Send me a private message on this site if you need more info---after seeing the post to Tina.
    kim
  • LKHorner64
    LKHorner64 Member Posts: 3
    #14
    K_ann1015 said:

    Info to pursue EC Awareness & Prevention Month in your state

    Hi Tina,

    I contacted KY's Governor and he declared April 2010 EC Awareness & Prevention Month. Many others used these suggestions & the draft language that I used. Any one can address this in their state as well. I think contacting Governor's at this time is more effective and more likely to lead to success for many reasons. One is because of the health care reform looming over the Senate & House. (I did contact our state's legislators-but they declined to support this at the time.)


    1) contact your governors office through their website mail and make your request. (contact info below) I simply, briefly, but passionately told why I thought it was important, told about my connection to Esophageal Cancer and stressed that it would benefit ALL of my state’s constituents—how can they say no???. :) (send me a private email if you would like to see what I wrote to my governor---my EC "story")

    Here is a website that lists ALL the states legislators & governors contact info:
    http://conservativeusa.org/mega-cong.htm
    (It looks like when you click on the gov. link you get an email that you fill in)

    2) I think overlapping with email – fax & phone call is a good idea. They usually want to help their constituents

    3) When I heard back from the governor’s representative, he asked for “draft language”. I can post that as well or email it.--just send me a private message with your email.

    I don't to make this post too long---but if it does anything to shift some monies to EC research / prevention & treatment---then I'll do it!

    My dad is post (stage 3) EC surgery (12/09) at Duke. He is doing very well, but very thin. He has follow up scans later this month. His younger brother Dx'd with stage 4 EC 3/20 passed away after only 3 months. My 12 year old daughter has reflux---so this disease is very personal to me. I want to make a difference.

    Kim

    EC Awareness & Prevention Month
    Kim,

    I would love to see the information you sent to Kentucky's govenor regarding EC Awareness & Prevention. I am beginning with my state legislators just to start the awareness in my own area. There have been six diagnoses within a half hour of us in the two years since my husband's diagnosis. We live in Clarion County, western Pennsylvania, and I have been told that our area has more cancer diagnoses than anywhere else in the state. I have left a message with my husband's surgeon to see if they can provide me with some statistics regarding our area so that I can include them in my appeal.

    Thank you so much for your willingness to share this information. I have just found this site in the last couple of days, so I am really looking forward to exploring the stie!
  • MRapp226
    MRapp226 Member Posts: 44
    #15
    rnic22 said:

    EC awareness
    Judy,
    If you want to send me an email at rnichols1960@gmail.com I will explain how I did this. I tried to send you a private message here but it will not accept it.
    Rolinda

    NJ Esophageal Cancer Awareness
    Hi Rolinda! May you share the information with me as well? My dad, 54 years old, was officially diagnosed on August 9th and passed away on August 29th. Before this, we never heard of Esophageal Cancer and certainly didn't know it was caused by Acid Reflux!!! The citizens of this country need to know more about this aggressive cancer and more importantly know the steps to avoid getting it!!! I live in NJ and as far as I am aware, does not recognize April as EC Awareness Month and I want EVERYONE, EVERYWHERE TO WEAR PERIWINKLE!!!! = )

    You may e-mail me at MRapp226@aol.com.

    Thank you, thank you for your help with this.

    -Melissa
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #16
    K_ann1015 said:

    EC Awareness info
    HI Woody. I don't think Indiana proclaimed April EC Awareness and prevention month, but I am not sure. I live in KY---please see post above to Tine ---you can approach your governor's office like I did in KY and attempt to raise awareness in your state too! Send me a private message on this site if you need more info---after seeing the post to Tina.
    kim

    Thank You
    Hello Kim
    Thank you so much for all of your helpful information! I will be working hard to make a EC Awareness Month for the state of Virginia. Hope all is well with you and your dad. Hugs to you both.
    Tina in VA

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