2009 Harley Davidson Fatboy Raffle
Benefits the X.P. Family Support Group
Draws on 04/25/09!
Raffle Benefits
The Xeroderma Pigmentosum (XP) Family Support Group. Please take a moment to learn a bit about this terrifying disease: Xeroderma Pigmentosum (or XP) is a rare inherited disease affecting both males and females. It causes a person to be extremely sensitive to the damaging effects of ultraviolet radiation. Undiagnosed and untreated, XP can lead to the early onset of skin cancer and blindness. In addition, approximately 20% of the people with XP develop progressive neurological disease.XP is an autosomal recessive disease caused by mutations in genes that are critical for DNA repair. The body must repair DNA when it is damaged by harmful external agents such as ultraviolet radiation, X-rays and chemicals. There are at least eight genes that are critical for this DNA repair process. If a person is born with any of the eight genes not functioning correctly, he or she will develop the symptoms of XP. The genes for XP are: XP-A, XP-B, XP-C, XP-D, XP-E, XP-F, XP-G, and variant XP. Prior to the discovery of the XP genes themselves, the term “complementation groups” was used to describe the laboratory variations seen in the cells of XP patients. The cells were categorized according to the capacity of the cells to repair DNA after they had been damaged by ultraviolet radiation in the laboratory. Mutations in the A, C, D, and Variant genes make up over 90% of XP cases. The main goal of treatment is protection from UV exposure and thus prevention of the damaging effects it can have on the skin. There is currently no cure for XP. What is the prognosis? Many patients with xeroderma pigmentosum die at an early age from skin cancers. However, if a person is diagnosed early, does not have severe neurological symptoms or has a mild variant, and takes all the precautionary measures to avoid exposure to UV light, they may survive beyond middle age. Patients with xeroderma pigmentosum and their families will face many challenges in daily living. Constant educating and reminding of the need to protect oneself from sunlight is paramount to the management of xeroderma pigmentosum.
Raffle Prizes
1ST PRIZE – 2009 Harley Davidson Fat Boy.
2ND PRIZE – $500.00 Harley Davidson Gift Certificate.
3RD PRIZE – $250.00 Gas Card.
Raffle Tickets and Info
Tickets are $20 each or 6 tickets for $100! Only 2500 tickets will be sold! For more information on the Harley raffle, to buy tickets online, to find out more about the XP Family Support Group and more visit their website at XPFamilySupport.org. You can also download the raffle ticket flyer right HERE. This raffle draws on April 25th, 2009. Thanks!
This is a great organization! I have been actively involved with this organization. If you just want to help a great group, buy a ticket.
Great Odds!! I looked at the site and only 1200 tickets have been sold. When I called they told me that the raffle will still take place. I bought 10!!
Susan,
Nice! Best of luck and thanks for visiting the site!
Bill
With only one week to go, we have sold 1,634 tickets. That means there are 866 tickets left to sell. Thank you Susan for buying 10 tickets, and a huge “Thank You” to Bill, whose website has had a tremendous impact on our recent online ticket sales. By featuring our bike just prior to the raffle, the online sales have really picked up. Again,thank you Bill, and to all those who are supporting the XP Family Support Group. Together we will find a cure for XP, and get our children out of the dark! The day my little girl can go to the beach during the daytime will be the happiest day in my life! Go to http://www.xpfamilysupport.org and buy a ticket now, and thank you for caring.Good Luck!
Rich,
Here’s to a great ending to your raffle. Hope you sell every last one! Be sure to drop back by after to let us know how you make out.
Good luck,
Bill
THank you Bill, for the great advertising on your site. I am confident that your site will help bring in the last 800 we need. With your help we will be able to help alot of kids with XP. Your site is great!
Michele
Michele,
Your more than welcome…hope you guys are able to finish up strong!
Let us know how you do.
Bill
Bill,
We finished very strong, and brought in nearly $3,000 on our final day of the drawing, selling nearly 2,100 tickets out of 2,500. Thank you to all those who donated to the XP Family Support Group. This will hopefully bring us one step closer to funding a cure for XP.
Rich