As I watch the movie the Lorax last night (which rocks by the way), the main quote from the movie made me think of all of you. “Unless someone like you care a whole awful lot, nothing is going to get better it’s not”.
Wylder’s research fund raffle was a BIG success!! We raised $3,000 for the fund and every penny is going towards research being done right now! They have already found out very valuable information … like the fact the there is much more fatty storage in the lymphatic system than originally suspected with Niemann Pick Type A. We are hopefully we will learn more and more over the next 6 weeks all thanks to our sweetest little man and all of you, we are making a difference. So proud! We also received $350 from Temple Bar and Grill … Wylder’s research fund is on the move.
Steven and I do not want to stop there. We are hopefully to continue with Wylde’s research fund in our future and maybe even team up for some pilot studies. We just learned of two new little ones recently diagnosed with NPA … it is hitting to close to home. With Wylder continuing to guid us … we will persevere and have hope always.
The Niemann Pick Disease Foundation is also continuing to persevere, research and give families support. And from a donor/friends, that would like to remain anonymous … the foundation received a $5,000 donation on behalf of our WARRIOR. We thank you from the bottom of our hearts. YOU are all making a difference and we are forever grateful!!!!!!!
For now, while Wylder’s research fund is just getting up and running we have a simple favor to ask of all of you in the meantime. GET PREGENETICALLY TESTED for Niemann Pick! It is as simple as a blood draw. Don’t let any doctor talk you out of it because you are not of a “certain decent” … and yes, it is very rare … but it is here and happening. Test yourself while in the family planning stage. Test yourself even if you are done having kids … they could still be carriers … keep those grand kids safe. Aunt’s, uncles, friends … everyone with kids anywhere in your life … a simple test is so easy. Please get tested … for us. It really is as simple as a blood draw and they only need a small amount … here is a link for your doctors to know what type of tube to put it in ect.
Most doctors will know just what to order you … and if they question you or ask WHY .. say it is because of a most beautiful little boy names Wylder James!
Wylder’s Research Fund
Posted by September 4, 2012 5 Commentson