DO YOU want an ESOPHAGEAL AWARENSS MONTH in your state?

K_ann1015
K_ann1015 Member Posts: 500
edited March 2014 in Esophageal Cancer #1
Hi everyone. My dad has EC stage 3, has had chemo, radiation & surgery. Recently we found out that his brother is also diagnosed with this disease! He actually has hi treatment planning meeting w/ oncologist on Wed. My 11 year old also suffers form reflux. So....I feel the need to put my frustration, fear, concern & anger into making a difference for the better of all of us.

I have been reading most posts on this site since my dad's diagnosis in Aug.09. SO many stories are SO similar. I have learned so much about this disease and realize that it is among the cancers with the LEAST amount of federal medical research funding...

Anyway, I have heard from our Governor's office in KY, that they will grant a "Proclamation" that April 2010 will be Esophageal Cancer Awareness & Prevention Month in Kentucky!

Instead of having everyone try to re-invent the wheel (you can if you want), I wanted to share the "draft language" that I used when I wrote my governor's office. EMAIL ME IF YOU WANT TO SEE What I SENT MY GOV> OFFICE TO GET THIS DONE. Bkpriest@insightbb.com

I also have a website that lists EVERY state of the union's CONTACT INFO for governors, & legislators: click here:
http://conservativeusa.org/mega-cong.htm

We have people on this site from PA, OK, KY, MD, NV, NY etc, etc

We can all make a difference for our friends, family and loved ones, diagnosed with EC or not. Please consider contacting your governor's office -- I don't want this to be any longer--so I'll stop here.
thanks for reading this.

Kim Priest

Comments

  • Donna70
    Donna70 Member Posts: 852 Member
    #2
    thanks Kim
    If you have time, send me the info because I did not seem to get that much of a response from Congressman Sarbanes in MD. If you know something has happened good in MD, let me know but I will try the governor. thanks again for spreading the info, it is much needed. thanks!!
    Donna70
  • chrisk06
    chrisk06 Member Posts: 110
    #3
    Kim,
    That is AWESOME! Could
    Kim,

    That is AWESOME! Could you please e mail me the info.

    Chris
  • unclaw2002
    unclaw2002 Member Posts: 599
    #4
    Kim, Great news. I know we
    Kim, Great news. I know we have traded messages about our efforts and you know that Delaware has also designated April as EsophagealCancer Awareness Month as well. It takes a little bit of time and some persistance but it is worth it as you know. Wouldn't it be great if we could reach all 50 states.

    Best,
    Cindy
  • K_ann1015
    K_ann1015 Member Posts: 500
    #5
    unclaw2002 said:

    Kim, Great news. I know we
    Kim, Great news. I know we have traded messages about our efforts and you know that Delaware has also designated April as EsophagealCancer Awareness Month as well. It takes a little bit of time and some persistance but it is worth it as you know. Wouldn't it be great if we could reach all 50 states.

    Best,
    Cindy

    for those that want to
    for those that want to try---here is website that lists EVERY state of the union's CONTACT INFO for governors, & legislators: click here:

    http://conservativeusa.org/mega-cong.htm

    email me if want more info or need help bkpriest@insightbb.com

    Let's see how many states we can get! (even if it's for next year
    Kim
  • K_ann1015
    K_ann1015 Member Posts: 500
    #6
    about 7 different states have had expressed interest!
    There at least 6-8 different people (in different states) contacting their Governor to request an Esophageal Cancer Awareness & Prevention month.

    We have done the leg work if you are interested in pursuing in your state, we can give you contact info and draft language. The goal is eventually to make this a NATIONAL thing and yearly

    ---to raise $$$ for research in to earlier detection, treatment, prevention, etc.

    Tentatively, I have heard (but not sure if it is "true" that MD, DE & KY may proclaim April this year!!! Does anyone else have any other info...

    thanks to everyone and prayers continue non stop for all on this site affected by the "beast" Esophageal Cancer....
    Kim
  • unclaw2002
    unclaw2002 Member Posts: 599
    #7
    K_ann1015 said:

    about 7 different states have had expressed interest!
    There at least 6-8 different people (in different states) contacting their Governor to request an Esophageal Cancer Awareness & Prevention month.

    We have done the leg work if you are interested in pursuing in your state, we can give you contact info and draft language. The goal is eventually to make this a NATIONAL thing and yearly

    ---to raise $$$ for research in to earlier detection, treatment, prevention, etc.

    Tentatively, I have heard (but not sure if it is "true" that MD, DE & KY may proclaim April this year!!! Does anyone else have any other info...

    thanks to everyone and prayers continue non stop for all on this site affected by the "beast" Esophageal Cancer....
    Kim

    Delaware issued the
    Delaware issued the proclamation "April is Esophageal Cancer Awareness Month". I just received the formal proclamation in the mail from the Governor's office. I am going to send it to my Dad in Lousiana :)

    Cindy
  • K_ann1015
    K_ann1015 Member Posts: 500
    #8
    unclaw2002 said:

    Delaware issued the
    Delaware issued the proclamation "April is Esophageal Cancer Awareness Month". I just received the formal proclamation in the mail from the Governor's office. I am going to send it to my Dad in Lousiana :)

    Cindy

    very cool!
    Cindy! very neat!!!!
    That's what I was going to do when I get KY's....
    how is you dad doing?
    Kim
  • unclaw2002
    unclaw2002 Member Posts: 599
    #9
    K_ann1015 said:

    very cool!
    Cindy! very neat!!!!
    That's what I was going to do when I get KY's....
    how is you dad doing?
    Kim

    Kim,
    My dad had his Pet scan
    Kim,

    My dad had his Pet scan yesterday after his first full course of chemo (Taxol and Carboplatin) these are the preliminary results from the doc who did the scan he will get the official report next week from his oconlogist. The one lymph node that showed activity last fall shows nothing at all right now and is tumor has shrunk and gone from an activity level of 10 to a 4. And there are no new signs of activity anywhere else in his body.

    So he will start the next round of chemo with the same agents and begin radiation for the first time. Although we know surgery is the only real cure and at stage III that is an option, because my day is 78 and has diabities he is worried about quality of life issues so he hoping to avoid surgery if they can get rid of the cancer through radiation and chemo. Only time will tell.

    But right now there are certainly reasons to celebrate.

    Best,
    Cindy
  • rnic22
    rnic22 Member Posts: 9
    #10
    K_ann1015 said:

    about 7 different states have had expressed interest!
    There at least 6-8 different people (in different states) contacting their Governor to request an Esophageal Cancer Awareness & Prevention month.

    We have done the leg work if you are interested in pursuing in your state, we can give you contact info and draft language. The goal is eventually to make this a NATIONAL thing and yearly

    ---to raise $$$ for research in to earlier detection, treatment, prevention, etc.

    Tentatively, I have heard (but not sure if it is "true" that MD, DE & KY may proclaim April this year!!! Does anyone else have any other info...

    thanks to everyone and prayers continue non stop for all on this site affected by the "beast" Esophageal Cancer....
    Kim

    proclamation
    Tennessee is processing my request. I am not very patient!
    Rolinda
  • K_ann1015
    K_ann1015 Member Posts: 500
    #11
    unclaw2002 said:

    Kim,
    My dad had his Pet scan
    Kim,

    My dad had his Pet scan yesterday after his first full course of chemo (Taxol and Carboplatin) these are the preliminary results from the doc who did the scan he will get the official report next week from his oconlogist. The one lymph node that showed activity last fall shows nothing at all right now and is tumor has shrunk and gone from an activity level of 10 to a 4. And there are no new signs of activity anywhere else in his body.

    So he will start the next round of chemo with the same agents and begin radiation for the first time. Although we know surgery is the only real cure and at stage III that is an option, because my day is 78 and has diabities he is worried about quality of life issues so he hoping to avoid surgery if they can get rid of the cancer through radiation and chemo. Only time will tell.

    But right now there are certainly reasons to celebrate.

    Best,
    Cindy

    baby steps are worth it!
    It's hard isn't it---when someone says says "how is your dad?" (or husband, etc)--Even when they are doing relatively well---our fears & concerns make us hesitate....

    But really this is GOOD NEWS for your dad---revel in it---let him feel good about it too---he needs to see the light at the end of the tunnel-so do you!!---it can actually change the biochemistry in one's body if the patient doesn't have HOPE!

    great news!
    Kim
  • K_ann1015
    K_ann1015 Member Posts: 500
    #12
    rnic22 said:

    proclamation
    Tennessee is processing my request. I am not very patient!
    Rolinda

    awesome news!
    great news Rolinda!
    Kim

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