Thank you for welcoming an outsider to CF!

[jimhigginsCF]

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[jimhigginsCF]

I hit the return key...lol.

Now I will continue.

As many of you know of and have heard of and what chatted with Mr. Allan Glenn in past day, I don't think that words can do him a fairer justice than list own survival would have done. As I have mentioned before...it was this young mans story that pierced may dark soul only a couple of days ago finding him on the web, learning about his fate, his love and his struggle with CF.

And he's all over the web...lol. This guy is quite amazing. Yes, I said (is) in the present tence, because I probably won't finish reading ALL his postings probably until next month at least. Even after that I won't talk about him in past tence, because I must be living continual proof now that he still does exist in mind and sprirt. My mind and spirit.

Please don't scoff out loud, you'll need an extra breath to do that ....lol

But to be very serious, Allan Glenn is my project. For life.

No, that is not a joke. Allan was a very cute guy I know, but turning 41 shortly I asked God last night in the mirror WHY?

I never asked personally for enlightenment...not for physical beauty or riches...nor to be anyones advocate.

But now...I have been passed down a spear.

A spear that I cannot nor will not deny to hold now. A spear that have given ME hope for life, into something I know absolutely nothing about.

Fighting in the good fight is all I know right now. A fight I have been commissioned with by either the all mighty himself or Allan.

At this time, I would like to thank those who will help me understand more about our fight.

And don't be suprised if you see my initials on a CF legislation in future changing laws in Congress regarding who and who doesn't receive help. Because, as Allan said in his TV interview "What is the cost of one life?"

So damn the brueacratics, the insurance companies, and medicare programs for the poor who don't live up to their word.

I'm taking his guidon, I'm holding it high, and I will walk on (marching would propbably put most out of breath) in the name and legacy that he has not fufilled.

I will seek out any sponcer to create the new foundation for Allan. The "Richard Allan Glenn Cystic Fibrosis Foundation for Medicaid Welfare and Lung Transplant Association"

Corporate sponcership funding that will subsidise death and bring some hope, how little time left to patients such as Allan was.

My first target for heading the fund...because he works three block down the street from where I live...

Mr. Bill Gates, CEO, Chairman, and probably the richest man in America.

Certainly, an email would'nt do, not even a personal letter delivered in person would get through.

(YES, HE REALLY DOES WORK 3 BLOCKS FROM MY HOUSE!!!)

I need ammunition. Just enough to get his personal attention for Allan and CF.

Don't worry about the presentation, I'll handle that if the time comes.

I'm thinking hmmm... as a former journalist in the military a media blitz.

It's basically the government shell game where the media pans up a story on the government (knowing full well their going to poo poo it), writing the bad reviews, and then gettin comprimise.

Catch 22 or something like it.

I'm sure 'ol Billy get's pounded with tons of mail from would be charities that his secretary can toss in the shred bin so easily.

So that's not my take on how to do things if I'm going to shine Allans light in Billy's face.

I need CF people...top People...top current Sponcers of CF...and one hell of a film documentary crew.

It's quite unfourtunate that so much time needs to be involved and time spent into such a production. If anyone has contact with Micheal Moore...

But it is the good fight, the good cause and irightfully so in the name of such a great young man.

I will start tommorow drafting a letter to be sent out to all local news agencies regarding the upcoming meeting with Bill Gates (which date is for now unknown). A local media blitz pre-show.
Also I will draft a seperate letter in the next few days re same to the Washington State House and Goverenor Christine Gregoire.

Although Bill Gates is probably the richest man in America, the meeting also must be with local and national heads of CF....ohh...yeah Boomer too...

So here's how I'm thinking of a game plan....

CF local and national and trustees first...
Celebrities...(anyone know Oprah??)
Local and State media blitz for politicians..

By then if all goes well, we'll probably have about 12 people attending in Billys board room.

Please be assured that I can understand all about politics. I only wonder if he went somewhere else, if perhaps he still wouldn't be alive today. If only for 5-6 months more.

Flood me with any info you can..I'm a newbie here, but I'll be damned if I can't make a difference!

Thanks,
Jim

 

[IG]

mhm, good luck with this.

Allan didn't deserve to die. He had no chance at life this way and it's just sad.

Our whole system needs to be revamped, it's horrible as it is. You have to have a crappy quality of life to qualify for SSI, goven't help, etc. It's like a burden to the government to take care of it's sick, instead of it's right. And because of that they punish us, by being helped by the government most of us can't get married without substanstial hardships, most of us can't hold a job without risk of losing our benefits because of making more than the paltry sum the government allows us to make would allow for extra cash, Private insurance companies sometimes will not carry CFers under their benefits and when they do it's nothing but problem after problem. They keep our standard of life down, and do nothing to lift it up.
/off on a rant.

anyway good luck with this.

 

[JazzysMom]

Since there are only an average of 30,000 people with CF in America.....I think the key is the number of carriers of the gene which is 1 out of every 20. Most CF diagnoses are with no known family history. I think promoting the fact that "anyone" can potentially be a carrier & not know it until CF raises its ugly head is the key & then go into what CF itself is all about & the daily "normal" CF problems as well as the "extreme" problems like what Allan dealt with in his fight to save his life!

 

[Diane]

Gosh Jim all i can say is..........We REALLY need someone like you on our side. How could we all have guessed that Allan would be behind it all. <img src="i/expressions/face-icon-small-smile.gif" border="0"> He must smiling from ear to ear right about now knowing his fight still goes on to make real changes . This all brings tears to my eyes and has from your very first post. This disease can be so frightening and difficult to deal with and it almost seems like no-ones listening because cf seems to be the minority illness amongst the bigger more popular money making brands. I this summer competed in a car show that was to benefit cf and the money is given to someone with cf who is in need of a lung transplant, but cannot afford one. I got in touch with a friend of mine who is head of the "Your Way network" and does televised interviews and he went and did some interviews and helped get the word out. Having cepacia myself i asked right away when i got there if there was any other cf patients there and there was one. I got to meet him and we kept about 4 feet of difference between us so there would be no cross contamination. They did raise quite a bit of money ($15.00 per car to enter) they had over 100 cars there and people who didnt have a race car or hotrod,were making cash donations at the booth. It was awesome, and this summer i will have a lot of my muscle car friends go with me, so we can do more. I dont get to do much when it comes to raising $$$$$ for cf because of my having cepacia, but when a guy in my car club told me there was a car show to benefit cf , i HAD to do that. Why am i going on and on about this....it has NOTHING to do with what i was initially saying......lol . O well ,i guess once again, i have my car on the brain. You'll get used that , i talk about it a lot....lol

 

[anonymous]

The CF Foundation received a $20 million dollar grant from the Bill and Melinda Gates Foundation a few years ago. The link below has some details. Maybe they would be willing to donate more <img src="i/expressions/face-icon-small-smile.gif" border="0"> Thanks for your excitement!

<a target=new class=ftalternatingbarlinklarge href="http://www.gatesfoundation.org/aboutus/specialprojects/announcements/announce-137.htm">http://www.gatesfoundation.org/aboutus/specialprojects/announcements/announce-137.htm</a>

 

[Joblazer86]

All i can say is go for it but it's going to take alot to get the word out........ it's funny u mentioned michael moore cuz my mom was saying we should get him on our side and show everyone what ppl like us have to deal with as far as the insurance goes. Believe me its hell what we have to go through!!! i am always on the phone with some sort of insurance issue or programs that help ppl pay for their co-pays. i dunno if anyone has heard of these programs but each state has a different name for it. the one in texas is cshcn, dunno the full name, and i have been on a waiting list for over a yr for them. i need new lungs and its amazing what hmo's put us through. i just have to say HMO BLOWS!!!! ooopps i went off lol but GOOD LUCK!!

 

[anonymous]

Hi Jim,

Welcome to the site. I'm sorry I missed your first thread, when you threw your cowboy hat into the ring. (You know, Allan's parents gave that to him right before our Oregon trip last March--I sort of laughed when he put it on, said "very sexy", and I don't think he took it off the entire time we were there!) ;-)

It's heartening to know that Allan's life is still impacting others, that people are still aware and upset that he's gone, and that they'd be willing to fight for change to prevent what happened to him from happening to others. I want to do that--I'm still getting over the shock of losing him, but I want to go into social work and fight for health care that way. In one of Allan's last posts--one that was left unfinished, but I found later, he wrote this:

<blockquote>Quote<br><hr>Over the past few months, it's become a dream of mine to start a
foundation that would pay--in full--for life-saving medical expenses
for as many carefully-chosen people as it could help. One that would
give families renewed hope when it appeared all had been lost, and
their loved ones were literally at death's door with no prospect of
raising the money in time... I've been thinking about it non-stop for
at least two months, now, after merely tinkering with the idea for a
longer time. Not sure if it'd be doable, what with the hundreds of
thousands of dollars per patient it would need to raise, but wow,
would it be great if it worked...<hr></blockquote>

I first heard Allan mention that idea the during the interview for WRAL news, which was the day before he went into the hospital for the last time. (It was left on the cutting room floor, though, unfortunately.) It was something that he said that he wanted to do before he died. I intend to make it happen, if it's remotely feasible.

I wholeheartedly agree with you--Allan was amazing. He was my life, my love, and I'll forever be grateful that I was with him.

I'm very glad that Allan's story has so profoundly changed you, and I know you can make a difference. Good luck.

Jessica