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Wednesday, August 23, 2000
[ No, I can't send you information or pictures for your school report. Read the comments. ] I usually don't get overly serious when I write Pings, but with the introduction of the store, I figured I'd explain a bit about where half of the proceeds are going to. Progeria is an extremely rare genetic aging disease. It affects one in every 4 to 8 million children; there are currently about 45 diagnosed cases worldwide, for a total of about 100 diagnosed cases in the last century. Progeria causes the affected children to age internally at seven times the normal rate, meaing a 10-year-old child with Progeria has the respiratory and circulatory problems of someone his grandfather's age. It's an extremely sad disease, as there is no cure and there is little research being done because of its rarity. Children generally live only into their early teen years, with the oldest Progeria child living to 21. I became interested in Progeria about four years ago when I saw an episode of Jerry Springer (of all things) and was moved like never before. The kids affected by this disease had an incredible will to live and had the most positive outlook on life. So, I started the web's first resource page on Progeria. Thanks to movies like Jack, the epsiode of the X-Files titled "Young at Heart," and a recent special on the Discovery Channel called Old Before Their Time, hundreds of students and interested people have visited the site looking for more information. I've also had the pleasure of talking with a number of families affected by the disease, giving me a deeper insight. But nothing, nothing, touched me more than attending the 19th Annual Progeria Reunion this past June. As you can see, I took dozens of pictures and had a chance to hang out with the kids and meet families I had only talked to online. I was especially honored to be mentioned by Bill Sample, founder of the Sunshine Foundation, during his opening speech of the reunion. Which brings me to where half of the proceeds from the Daily Ping store are going to. The Sunshine Foundation is a Make-a-Wish-type foundation that grants wishes for terminally ill children, including those affected by Progeria. The Sunshine Foundation also organizes the yearly Progeria reunion. Everyone has "a cause," and this one is mine. Thanks for indulging me in this unusually serious Ping. We'll return with a lighter topic next time. :) -ram Comments
FROM: Matt
DATE: Wednesday August 23, 2000 -- 12:44:50AM Hey Ryan FROM: Paul DATE: Wednesday February 28, 2001 -- 6:16:34PM Hi, I have to do a report on a genetic disorder. I have decided to do my report on Progeria. Could you please send me some infortmation and pictures if u have them to my email address. Please send them in March. Not late March, because the report is due the beginning of April. Thank you for your kind help. -Paul FROM: Ryan DATE: Wednesday February 28, 2001 -- 11:59:02PM Paul -- Visit the HGPS Resource Center. FROM: Yolanda DATE: Saturday March 10, 2001 -- 4:50:57PM I am doing a report on Progeria and i was wondering if you could send me some pictures. It would be a great help. Thanks! FROM: melissa & sammi DATE: Wednesday April 4, 2001 -- 3:06:34PM hello... FROM: Tamika DATE: Saturday April 14, 2001 -- 6:10:31PM Hi! I am doing a report on progeria and it would be really helpful if u could send me some informaton and pictures asap. Thank you. FROM: Paul DATE: Sunday April 15, 2001 -- 8:41:13PM Folks - you'll probably just want to scroll up and read the actual Ping. Ryan has a link to his Progeria minisite, which has quite a bit of information. FROM: Ryan DATE: Sunday April 15, 2001 -- 9:23:29PM And as I mention on my FAQ, all the information I have is there. Writing to ask for more is kind of pointless... if I know something, it's on the site. FROM: Sissy and Heather DATE: Tuesday April 17, 2001 -- 1:45:43PM Hi! We r doing a report on progeria and would luv some information from u. If u could send any, that'd be grate and we'd luv u foreva. FROM: Ryan DATE: Tuesday April 17, 2001 -- 2:11:11PM LOL... that last one's funny once you mouse over and look at the e-mail address. :) FROM: Amanda DATE: Friday April 20, 2001 -- 4:57:51PM Hi i am doing a report on Progeria and was wondering of you culd send me some materials for an oral presentation i have to do thanx! FROM: carisa DATE: Friday May 4, 2001 -- 1:04:42AM Hi~ I am doing a report on Hutchinson-Gilford Progeria Syndrome and I need a visual to go along with it. If you have some close pictures of the children or know where I can find them that would be really helpful. Thanks. FROM: Rob DATE: Friday May 4, 2001 -- 9:59:23AM Now this is starting to border on the ludicrous... FROM: Quantel DATE: Wednesday May 16, 2001 -- 8:09:37PM Hi ,I was told by my 7th grade teacher to write a book about anyting and i decided to write a book on progeria and i was wondering if i could use some of your pictures. Please say yes. Get back to me before friday FROM: Maria DATE: Friday May 18, 2001 -- 7:42:50PM Hi I'm doing a presentation on Progeria, I have search every where for information I found some, but I don't think is enough, my presentation is on Power Point and I only have 10 slides, If you can send my more information it would help me alot, I would really appreciate it!!! FROM: Rob DATE: Saturday May 19, 2001 -- 10:38:37AM Can't you people READ?! My GOD! FROM: Hilary DATE: Sunday May 20, 2001 -- 3:25:45PM I find children to have a great outlook on life, despite thier condition. This site is great and very informative. Thank you. FROM: sarah DATE: Monday December 3, 2001 -- 7:07:36PM i feel so bad for these poor children, im so happy that you have this site so that i can learn how to help FROM: Bertha landeo DATE: Monday January 7, 2002 -- 9:10:50 pm i love you guys have a great new year FROM: DATE: Thursday January 10, 2002 -- 11:34:36 am do you have any pictures on what progeria happens to your insides? FROM: Margo Mc Namee DATE: Friday March 15, 2002 -- 12:53:53 pm Can you please give me some more information on Progeria and what you know about it......Thanks! FROM: Shariese DATE: Monday September 16, 2002 -- 8:32:45 pm Hi. Im doing my senior project on progeria, and i was wondering if u could send me some pictures of how children with progeria age progression is different from normal children. It will help me a great deal. FROM: sarah DATE: Sunday November 3, 2002 -- 7:35:04 pm Hi i am doing a project for my speech class on progeria. I am really interested in this topic. Could you please send me some pictures with children who have progeria so I can make a visual aid. Thanks FROM: Ashley DATE: Thursday November 21, 2002 -- 11:00:51 am i am doing an independant study on progeria and i was wondering if you could send me some information! FROM: Iram DATE: Tuesday November 26, 2002 -- 2:21:44 am hi FROM: joveriah DATE: Tuesday November 26, 2002 -- 2:24:00 am hi FROM: kellie.d DATE: Saturday November 30, 2002 -- 11:19:16 am this site was very informative! i would like to send my love and support to all progeria sufferers and their families!! my love and prayers go out to you all!! xxxx FROM: Ashlee DATE: Wednesday December 11, 2002 -- 5:12:01 pm i think the children with progeria are special. I just learned about while doing a project for school. When some kids im my class saw these pictures they stared to laugh and i tokd them what if they looked like that and peopl laughed at you and they thought and relized that we need to give these children respect insead of making fun of them. FROM: Jill DATE: Tuesday January 7, 2003 -- 9:08:19 pm hi~ i am doing a report on progeria for my biology midterm project. I need some pictures of this. If you could send me some to my email address that would be deeply appreciated! FROM: Ryan [E-Mail] DATE: Thursday January 9, 2003 -- 7:53:31 pm Hey, thanks for the information... I am doing a report - BUT WAIT! I do not want any more info from you. The information you gave helped plenty. Thanks! FROM: Melissa DATE: Saturday January 11, 2003 -- 10:34:12 pm I am doing a report on Progeria. Every time I explain to someone what it is, they get the wrong impression of what someone with Progeria looks like. I was hoping that you could send some pictures to my email address ASAP. FROM: Katie DATE: Monday January 20, 2003 -- 1:51:25 pm Hi! I have a project to do on genetic disorders, and I chose Progeria. If you can, pretty please send me any info. that you may have! THanks a bunch! FROM: Shari DATE: Tuesday January 21, 2003 -- 9:26:52 am hi! im doing a project on progeria and i was wondering if you could send me some information it would be helful! thankyou FROM: Lindsay DATE: Monday February 10, 2003 -- 8:22:04 pm I am doing a project on genetic disorders for my biology class and i would very much appreciate it if you could send me information and pictures. It would be very helpful. Thank you so much! FROM: Greg DATE: Tuesday February 11, 2003 -- 11:11:24 am I'm doing a school report on the failing American educational system. I was wondering if you could send me some info on kids who don't read anything and ask repetitive questions. Also, if this evidence could support my claim that many of these kids put absolutely no effort into their own work, I would appreciate it. Thank you. FROM: anthony medford DATE: Tuesday February 18, 2003 -- 4:45:15 pm i am doing a reported on progeria and i am wondering if i can get some pictures. FROM: Skylar DATE: Wednesday February 19, 2003 -- 6:00:18 pm Im doing a report on Progeria and I think that you should just show the dumb pics FROM: Teri DATE: Friday February 21, 2003 -- 10:48:49 am Your website is good but I need pictures for a Story I have to write about A genetic Disease you wont give I i'm hurt. FROM: Brittney DATE: Friday February 21, 2003 -- 11:51:20 am Hi, FROM: kiera DATE: Monday February 24, 2003 -- 12:30:48 pm Hi I have to do a senior exit in order to graduate hight school. My senior exit is on progeria, and i would love it if you could send me lots of pictures and information on this diseaes so that i can complete my product in order to present. I need as many pictures as possible. Thanks alot Kiera
From: Kristy
Hi, i'm doing a disease report on progeria and was wondering if u could send me some info?
From: Dave Walls
(URL)
We have preventative measures for comment spam..now we just need some sort of measure for comments by PEOPLE WHO DON'T FREAKING READ THE LAST 5 YEARS OF POSTS.
Ahh...that felt so much better.
From: FUCKOFF!!!
FUCK YOU BITCH WHY NOT I GOT TO DO A FUCKING REPORT ASSHOLE
From: jessica
yes my name is jessica and i am doing a report for biology class and i am having trouble finding pictures of this disease..if it is possible could u send me some pictures please at phatxangel1000@yahoo.com
From: A
Hi
You probably wont respond to this the most current date is 2003 this is 2008 anywho.... i am doing a projest for school and i need an interview or something that describes the personal/everyday life of some one with the disease hope to get an answer soon!
From: aron
Hi, I am doing a report on progeria.
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