- How you can help
- The
XP Society, Inc. is a 501(c)3 federal tax exempt status not-for-profit
corporation; listed by the NY State Department of Charities.
They depend entirely upon voluntary contributions from individuals, businesses, and fund raising events for all operating expenses and capital or research projects.
Currently the largest single expense out of the general fund is the Summer night camp program, Camp Sundown.
They are actively seeking grants and other sources to fund the additional projects and research which would fulfill the XPS mission
-
- Mail to:
- XP
Society
PO Box 4759
Poughkeepsie, NY 12602
USA
- You may also contribute on-line using your credit card at the Helping.org Website.
- This link opens a new browser window.
- Type in key word: xp, then click Search.
- Click on highlighted full name: Xeroderma Pigmentosum Society, Inc.
- This opens a page where you will see a box labeled: Click Here to Donate Now.
- This opens a page where you can enter Visa or Master Card information.
- Your entire contribution will go to the XP Society. Helping.org does not deduct anything for this service.
 |
"Mr.. Moon" watching over the children with XP
XP Grass Roots
Song playing is Stardust
(click on music note to adjust volume)
This page was created to help spread the word about children who are suffering fromXeroderma Pigmentosum.Please don't be put off by the big name!You can simply call it "XP" if that makes it easier.
|
Xeroderma Pigmentosum Society has it's own homepage and you will find a link to it below. But first let me tell you why this page is here. |
What is XP?
|
|
A rare genetic defect in ultraviolet radiation induced DNA repair mechanisms; characterized by
severe sensitivity to all sources of UV radiation (especially sunlight). |
|
|
A fatal disease that affects a very small population. |
|
|
This is a disease that causes zero tolerance to the UV rays from the sun. |
|
|
This is a disease that causes skin cancer. |
|
|
This is a disease that affects children, because those affected by XP rarely, if ever, live to be adults. |
There is no treatment available for XP and management is limited to avoidance of exposure to damaging UV radiation by staying indoors with sunlight blocked out, and use of protective clothing, sunscreens and sunglasses. Also, elimination of known environmental carcinogens may slow cell degeneration.
I am not writing this from a scientific viewpoint.
|
I saw a special on television about a little girl named Katie. The show started off by saying
"this is about a little girl who rides her bike in the house and goes outside after dark to play". As I watched I was very touched. This was a story of a terrible and very rare genetic defect that affects children from birth. There is no cure at this time and it is fatal.
|
I was saddened to see the plight of these children, but I was also pleased to see the things people are doing to insure that these children are able to enjoy at least a little of what being a child is all about. I will add links here to allow you to see these things in case there is something you can think of to aid in this cause.
|
During the special they showed a camp that these children go to that allows them to do normal children things but do them after dark so as not to be hurt by the sun's rays.They explained that because only about 100 children in the United States is affected by this disease, there is not the public outcry for a cure as in more well known diseases.
|
How can we do this?
We need to spread the word and ask for help!
Somewhere, there is someone who can make a difference.
How do we get the message to those who can do something about it?
The World Wide Web is a good place to start
Spread the word!!
Please go here to see..... This show was aired on May 10, 1997.
I immediately searched the WWW for a homepage or email address and found the Xeroderma Pigmentosum Society . I felt the need to write and let them know how I was touched and to offer help.
Here is a copy of my e-mail to them dated 5/10/97
Hi,
I just saw a program on TV about your plight. I was touched deeply. I
would like to do something. I am on a very limited budget, so financial
offerings are out of the question, but I am active on the internet and I
am a (non-traditional - 53 yr old) college student. I am sure there
must be something I can do to spread the word about this disease. I
also belong to a group of women on the WEB that are a wonderful group
and I'm sure they will also want to do something when I mention this to
them. I could also make the sororities on campus aware and maybe they
could have a fund raiser or something too.
My heart goes out to you and yours. Being a parent is hard enough under
normal circumstances.
You will be in my prayers
Strawberry
The Strawberry Patch
Today, May 18,1997, I received this reply from Katie's Mother
Dear Judy,
I especially like the fact that you are a non-traditional student. At
what point do we ever really stop learning? I myself am starting back to
school this fall ... I get so frustrated with the answers that this
disease has too few people to make it a profitable study on one hand and
on the other, because of the epidemic melanoma rates, the XP cell and
even patients are used in studies throughout the world to understand the
pathology of diseases that affect millions. It may take me a while, but
I am determined there is an answer for Katie and I will not let go until
I am done!
There is so much that we have no control over that hurts children every
day on this planet...this is one thing that can be fixed.
I am certainly open to any ideas you may have. We are trying to raise a
total of $200,000 by Dec. $100,000 will fund a three-tiered research
project involving a scientist in California, a student and patient in
France. The other $100,000 is to purchase a house to be used for respite
for XP families, house a small laboratory and serve as the international
headquarters for XPS. (A woman called to "donate" a home she has nearby
us that is big enough to serve all those needs , has 28 acres so our
late nights with XP children will disturb neither traffic nor
neighbors.. is just perfect.. I believe wholeheartedly in divine
intervention.) There is $100000 left on her $300,000 mortgage.
Can we do bake sales on the internet? I wish I knew the way to do this
but I am at a loss here and hope it comes to me very quickly.
Good luck in your studies, thank you for writing and thinking of us and
if anything comes to your mind, please let me know!
Caren Mahar
Here is a banner you can use to link
This is the code to add just a text link to your page. Just cut and paste the code below.
<a href="http://www.strawberrylady.com/xps/xpsociety.html">
<b>XP Grass Roots</b></a>
This is how it will look.
XP
Grass Roots
Here is a list of those who support this cause
by either adding a link or a page
Thank you all
Heart
~to~ Heart
Ye Ole Homeplace
Stephens
Family Nuggets
Children Are Special Little People
Marvelicious Credits and Prayers Page
Southern Lady's Home on the Net
You've Got To Have Heart
Donna's World
Heart of the Lady
Mspuddins Homepage Index
PEDIATRIC RESOURCES - For Nurses
The Child First and Always...
Angel Nitesky's Homepage
Healing Slowly
A Special Thanks for Your Support!
Here are some things others have done to help.
XPS Sundown Camp
Please read and maybe it will inspire you.
Video Phones for XPS Project Campers Connect
XP Research and Technical Notes
Legislative Action~Orphan Drug Act
Fund Raising Activities
The Health Train
Will you do something to help the Children?
visitors since moving on 5/11/00
Border Background made by Strawberry
for this page only
Page created, hosted and maintained by
Strawberry
Copyright
c) 1997-2000 The Strawberry Patch
Created: 5/18/97 Updated:
05/17/02