ADVOCACY/AWARENESS/FUNDING......

[Hebbie]

It's that time of year again and I am beginning to plan the 2nd Annual NJ Lung Cancer Benefit Walk for November 5th.

ADVOCACY/AWARENESS/FUNDING......I've been thinking a lot about these subjects -- sadly, we gain 170,000 new members to this "club" each year.....and we need a VOICE!

On a POSITIVE note -- in the two short years since my diagnoses, several steps have been made to increase awareness (this website being one of them!!)

We just spoke on this very subject at my lung cancer support group monthly meeting at The Wellness Community (in Philadelphia). Years ago, patients with lung cancer did not live long enough to have a voice, and treatments were so difficult they left most incapactiated. Treatments have changed, survival has changed and the tide is slowly changing as well.

We have groups such as this one, ALCASE, Women Against Lung Cancer, LUNGevity, just to name a few that are out there day after day advocating for us.....for more funding, for awareness, and for compassion, trying to break the cycle of the stigma that is so previlent in this country.

There are events like the Thomas Labrecque Run in New York, as well as other walks/runs popping up across the country to benefit lung cancer. (check out www.lungcancerwalk.org to see just a few)

I have noticed that the local media finds interest in our stories, having been interviewed by a South Jersey newspaper this past year, and having a large Philadelphia newspaper reporter sit in on our Wellness Community support group this past weekend for a story to run in a few weeks, focusing on lung cancer. I know that Dave Grant has been interviewed for local news stories, as well as some other lung cancer survivors. Now, thankfully, the national magazines seem to be picking up our stories, Karen Parles (www.lungcanceronline.org) was featured in Self Magazine this past summer, and a reporter from Vogue is doing a story on lung cancer which should be running in the next few months. What we need now is for the national MEDIA to pick up the slack. What I am contimplating doing is gathering up all the "local" press stories I can find on lung cancer, submitting them to the national press/media and saying "ok -- here are our stories -- there is obviously something happening here -- are you going to run with it or not???"

If Breast Cancer patients could get together and create the movement they have created in this country, so can we!!!

And that concludes my soap box pep rally for the day!

[ginnyde]

Heather,

I like your soap box. See you in November.

[stephnewyork34]

Heather,

good for you. I am planning to do a walk, but not until Nov 2006, so I have some time to organize it. You inspire me to do more. Also I have some media contacts and celebrity contacts, when I get back to the US I will work on it more. It is just hard from here.

Good luck! I will support you for sure.

Steph

[kimblanchard]

Good for you! I ran the first annual ALCASE 5K down here in Virginia Beach last November and plan on walking or running it (walking if I'm lucky enough to get pregant again before then ) again this November. I raised $500 last year, going to try to double it this year. Didn't think I was capable of running 1 mile let alone 3 but after watching everything my dad had gone through and thinking of all of you I was able to do it. You are all such an inspiration. The group down here did get quite a bit of press but we plan on doing more this year. IF you have any suggestions on what else I could do down here I would be more than happy to see what I could do.

Tammy

[Nancy B]

Heather, that is so great that you are doing this again. In 2003 I raised $2600 for The Wellness Community and did a half marathon in Vancouver BC. My Wellness Community does not have a support group specifically for lung cancer - wish it did. I am also an Orientation Leader for newcomers at Wellness.

I would like to do one more 1/2 marathon to raise money for lung cancer, just not sure where to go yet. I am just getting back on my feet from my last bout of lc and am starting to walk acouple of miles a day. I will check out the link you supplied and see if I can find something near me.

Thanks for all you do.

Hugs,

Nancy B

[Hebbie]

I ran the first annual ALCASE 5K down here in Virginia Beach last November and plan on walking or running it (walking if I'm lucky enough to get pregant again before then ) again this November.

Tammy -- the Virginia Beach race will be taking place again this November 5th -- but this time around, it is benefiting LUNGevity, raising money for LC research. You raised $500 yourself? Good for you!!!

In 2003 I raised $2600 for The Wellness Community and did a

half marathon in Vancouver BC.

Nancy -- you raised $2600??? YOU ROCK!!

Also I have some media contacts and celebrity contacts, when I get back to the US I will work on it more

OK Stephanie -- I'm going to hold you to that!!

It is so depressing that we can't seem to get a celebrity to jump on this "bandwagon" and advocate for our cause......I tried last year, but didn't get very far.

I have actually been in touch with Adam Sandler, who's father passed away from lung cancer last year. His publicist was very nice and we tried to coordinate having Adam send some signed memorabelia to our NJ lung cancer benefit this past November, but the timing was off and we was oversees filming a movie. I am hoping to have better luck this year.

Jim Thome, who plays for The Phillies, lost his mom to LC a few years back. He was kind enough to donate a signed print to our LC walk, but he didn't actually attend the event or donate $$ -- however, I thought it was very nice that he donated the autograph.

Bill Barber, NHL Hall-of-Famer, and former coach for the Philadelphia Flyers is a friend of my husband, and also lost his wife to lung cancer several years ago, at the age of 48. We tried so hard to coordinate having him at our event, signing autographs as a way to raise additional funding, but unfortunately he was in Canada (he is now a talent scout) and could not attend. He was, however, very open to helping out the cause.

Gerald McGraney (not sure how to spell - he was "Major Dad") was diagnosed w/ Stage I LC last year and seems to be doing well, but other than one or two brief stories I have seen, all you really get out of him is "I was very lucky, it was caught early, and I needed no other follow up other than surgery" (which as we all know, is not exactly true these days, as chemo is recommended after Stage I surgery..... )

I have also been in touch with The Today Show (as many of us have), sending several e-letters, and I really hoped that they would pick up the cause since Matt Louer's father passed away from LC in the past year or two. Katie Couric jumped all over Colon cancer in memory of her husband, but I haven't heard much from Matt by way of speaking up about it.

Harrison Ford's mother died of LC last year and I attempted to contact his publicist in hopes of him wanting to take action, but got nowhere.

Bottom line is, I guess we can't wait for a big time "celebrity spokesperson" shouting from the rooftops -- we will have to become the celebrity spokespeople ourselves!

[Melinda]

Hebbie--

It's good to log on for the first time in a LONG, LONG time--and see your smilin' face still up and at 'em in the activism forum. As you know, Geoff and I have been holding on to a "hallpass" for quite a while.

However, I wanted to make you promise that you would contact us so that we can help with the event again this year (and not at the 11th hour! ).

As always, my hat is off to you.

Fondly,

Melinda