Just a request.

[walter32799]

Thank you, Allen.

The HAA has given me the honor of creating a fundraiser for the organization. Only problem is I'm clueless. I don't want to raise 10 or 20 bucks. I want to do something that really makes a difference.
Anybody got any ideas?

[walter32799]

Boy!! My wife and I went down to Columbia, SC to visit family this weekend. Her family celebrated Apr./May B-days in Aiken on Sat. So, we went down on Fri. Went to Red Lobster and treated my Mom to the Lobster she'd been craving on Fri night. Saturday morn, we left Moms' at about 10:30 headed for Aiken. After the B-days, we headed straight for Waynesville at about 6:30 P. Four long hr.s later, we pulled into our driveway, unpacked, unwound and passed out. We did it this way 'cause we had tickets to the Jeremy Camp concert in Franklin, NC on Sunday. W/ my meds, I don't travel so well any more. w/ all the driving on Sat., I was exhausted Sunday.
However, the concert was fantastic. He comes highly reccomended. If you are remotely curious about Contemporary Christian music, get tickets for one of his shows.

[walter32799]

Man!! I got a wild hair yesterday and spread organic fertilizer, potting soil, blood meal and bone meal over and then tilled our garden and a hill behind our house that I've got plans for. That was a wrestling match until I figured out it's much easier to till an incline up and down, not side to side . Then I planted a bit of corn, beans, zucchini squash and several Hostas given to me by our neighbor.
I'm pretty sore today. But, there's just a wonderful sense of accomplishment that comes w/ hard work and proving to this disease that I was right, by gosh. It ain't gonna whip me .

[Kazak]

Walter:

You will be in my prayers. I am sure it will all work out fine, trust in Him.

Take care,

Alicia

[walter32799]

Cladribine is beginning to sound like the hope we need. There are now at least four patients who have drastically improved after being placed on this drug. Here is a link to an article about the use of cladribine in treating ECD:

http://www.ncbi.nlm.nih.gov/pmc/article ... ool=pubmed

This link will take you to an abstract that leads us from a patient becoming quite threatened by ECD, to his being placed on Cladribine and making tremendous progress.
The photos with this article may be disturbing to some. But, it shows you what this disease is capable of.

[walter32799]

Well, I'll hear the verdict on Cladribine Thursday. Got an appt. w/ my Oncologist. Provided the possibilities are good, I just hope the insurance co. doesn't get in the way.
I wonder what a life is worth to a lobbyist and how much that would change if it were their life.

[walter32799]

Went to the Oncologist Thursday. He said I'm doing great and agreed about trying Cladribine. He does think we'll have problems getting the insurance company to cover it. So, I'm looking to the pharmaceutical companies for help. We're talking about new images in the future to back up the Cladribine idea.
Only one problem. Cladribine lowers the blood count. So, I have to sign a release in case I die!!

[walter32799]

Got a list of sites from Drugs.com and some ideas from a brainstorming session w/ a friend about sites that link to drug assistance and other ideas as to where to look. Now, it's time to go to work.

[jfraizer]

Thank you, Allen.

The HAA has given me the honor of creating a fundraiser for the organization. Only problem is I'm clueless. I don't want to raise 10 or 20 bucks. I want to do something that really makes a difference.
Anybody got any ideas?

Hey Walter

A couple of thoughts.

Check some of your local area country clubs. They probably do fundraisers all the time. I know we do down here. We have a casino night this Saturday with a bunch of different tables set up for poker, roulette, craps etc.... We also host silent auctions for different rally for a cure events. Many local businesses and services will gladly donate a product or service to be auctioned. Most any country club will host the event provided there is a food & beverage package attached so they can generate some revenues as well (at a lower profit margin of course). You could easily raise between $1k - $10k depending on the group of people.

A golf tournament can raise quite a bit. I am involved with one every year for All Children's Hospital. We usually raise around $50k.

On a smaller scale you could have a community yard sale. Ask all your friends and everyone in your neighborhood to donate stuff. My friend raised $1200 in two days for a neighbor who is ill and struggling with bills. Which was a pretty cool.

Good luck

[walter32799]

I called Heath Shulers' office today and should hear from them Tuesday. I contacted a local paper that seemed to be just drooling at the chance to do a story on the inept insurance industry. So, we started off with a letter to the editor. From there, we could work into a story, interview or series.