This page was created to help spread the word about children who are suffering from
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.
|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.
Please go here to see..... 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
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
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
You will be in my prayers
The Strawberry Patch
Today, May 18,1997, I received this reply from Katie's Mother
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!
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
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
Heart of the Lady
Mspuddins Homepage Index
PEDIATRIC RESOURCES - For Nurses
The Child First and Always...
Angel Nitesky's Homepage
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?
PO Box 4759
Poughkeepsie, NY 12602
visitors since moving on 5/11/00
Border Background made by Strawberry for this page only
Page created, hosted and maintained by
Copyright c) 1997-2000 The Strawberry Patch
Created: 5/18/97 Updated: 05/17/02
Please go here to see.....
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