Younger Girl


     

 


Fanconi Anemia Research Fund


Email:   info@fanconi.org
Phone:   541-687-4658
Fax:   541-687-0548
Website:   http://www.fanconi.org

Address:
 
1801 Willamette Street, Suite 200
Eugene, OR 97401

Questions/comments below:

Name:
Phone:
Email:
Questions/Comments:

 
 
p3270177.jpg
     

OK, I know what you’re thinking.  When you get a mass-distribution email (often several copies), you’re expecting Tall tales mermaids and other creatures of the deep, along with pictures of turquoise seas and purple sunsets.  We’ll, that’ll come.  I’ll update my website again as soon as I find the free time.  (After all, it’s been only 3 months and 3,000 miles since my last update.  But, that’s not why I’m writing you now.

 

 

 

I need your help!  And, I’m not talking about climbing the mast to fix the wind instruments (although, I could use some help with that wind instrument.), nor am I asking you to trouble shoot my water heater, so that I might take a hot shower (although I would also appreciate that assistance.)  No, this time I’m going to go way out of character and ask your help for something important!

 

 

You may remember that 3 or 4 times in the past few years, I’ve used my head to raise awareness for Fanconi Anemia Foundation.  By that I mean, I’ve shaved my head.  It’s my way of reminding us all that there are many more important things in live than our petty vanities.  And, you know what, people responded!  Each time I’ve lost the “mop-top”, thousands of dollars have flooded into Fanconi’s research efforts.  And, it’s working!  Back in ’05, I penned the following in my appeal: 

 

THE SERIOUS SIDE: You may have no knowledge of Fanconi Anemia. I confess, that I don’t know much myself. But, what I do know makes me very angry. It has struck too close to home. In 2003, Jake Shearer, a graduate of my alma mater Central Catholic, lost his battle with this insidious disease only weeks before his 22nd birthday. Jake’s father Glen was a fraternity brother and close friend at Oregon. A couple a weeks ago, another close friend from college was taken from us. Jeff Turner was only 55 when Fanconi (or a similar anemia and leukemia) took his life. As you know, there’s little in life that I take very seriously. But, this really pisses me off! If there’s anything that money can do to put an end to this, then I’ll do whatever I can. I’ve clipped a paragraph from the Canadian website to bring you up to speed: “What is FA? Fanconi Anemia (FA), first described in 1927 by a Swiss pediatrician Guido Fanconi, is the most common of the inherited anemias that lead to progressive, severe bone marrow failure, also known as aplastic anemia. The effects of the disease are devastating, leaving patients weak, prone to severe bleeding due to insufficient blood clotting and susceptible to infection. FA is a genetic disorder that occurs equally in males and females and is found in all ethnic groups. Though considered primarily a blood disease, it may affect all systems of the body. A Fanconi Anemia patient often, but not always, has other physical defects detectable at the time of birth ranging from minor to serious. Patients are also at an increased risk for developing leukemia and other cancers. Many children do not survive to adulthood.”

 

THE LIGHTER SIDE:  I’ve still a few loose ends (not to mention split ends), to tie up. Most importantly I need a venue for the shornin'. I’m willing to go anywhere to get this done. The key is finding a place where I might expect maximum humiliation, which in turn should return maximum donation. If you’ve got any ideas, please pass them along. But, please check with the powers that be to make certain we don’t get kicked out before we get cut down! I’ve also got to set a date. Hopefully this won’t be as hard as getting a date. But, it’s got to be soon. I wasn’t blowing smoke about running low on shampoo. When I get the time and date nailed down, I’ll get back to you.

 

THE MONEY:  As I mentioned earlier, the Fanconi people have graciously agreed to keep tabs on us, money-wise. So, I’ll have no difficulty letting you know how our efforts are panning out, or have panned out. Of course, The Fanconi Anemia Research Fund is a 501(c)(3) tax-exempt organization designated by the Internal Revenue Code. Their tax identification number is 93-0995453. You can donate online, or get additional information at http://www.fanconi.org/donate/DonateHead.htm

For the many of my relatives still trapped above the ice curtain in Canada, you can donate on the Canadian site http://www.fanconicanada.org/sys-tmpl/youcanhelp/. However, I don’t know if they’ll be able to maintain the tally. But, that’s not the most important thing anyway, is it? Fanconi Canada is a registered charity whose mission is to fund research in Canada into an effective treatment and, ultimately, a cure for Fanconi Anemia and to serve as a support network for affected Canadian families. Canada Revenue Agency reg'n no. 868951724 RR 0001 Whether it be Loonies or real money , please indicate that the donation is “in the memory of Jake Shearer”, and a part of the “Sciarretta effort”.

 

How much should you give?

Good question. Glad I asked.  Last year I told everyone that I was going to donate the money I’d saved by not visiting the tonsorial parlor in over a year. I’d gone on to admit that as a ‘ner do well, what I pay at Super Cheap's (it shows!) wouldn’t amount to much. But, I’m guessing that you normally pay more, a whole lot more. Give your annual hair care budget, and no one will call you cheap. Actually, I can’t promise that they won’t continue to call you cheap, but not as a result of this particular kindness. LET’S HAVE SOME FUN WITH THIS THING! All my heroes are sea captains. Naturally, first on the list is Capt. Ron (Rico), then Capt. Jack Aubrey, and Capt. Ahab (currently held in detention at Guantanamo, as an al-Qa'ida suspect) and Lt. Comdr. Philip Francis Queeg (Humphrey Bogart). When he ordered a full-scale investigation into the missing quart of strawberries, aboard the USS Caine, it was Queeg who said to his officers, “Let’s have some fun with this thing.” I say the same to you!

 

OK:  Back to “real-time” I’m just about to weigh anchor in Marigot Harbor, Simpson Lagoon, FWI.  In four days or less we hope to be in Kralendijk, Bonaire, N.A.  (The easternmost of the "ABC’s” On board are Anders “El Sweko” Billred and “Dead” Andy Shelley.  Both are old sailing buddies from San Diego (now living in Honolulu and Seattle, respectively.). 

 

Please remember, if you give Fanconi no more than you spend on hair care in a year that might be enough for a research breakthrough.  Until then,

 

 “If it’s going to happen, it’s going to happen out there.”

 

Thanks!

 

Marco

 


 

 

         

 

 
© 2010 YoungerGirl    Easily create your own website - FREE!