Thursday, February 9, 2012

MAD... sorry;22095692

So much hope we have... and yet someday it feels that the mighty dollars is all medical  field seems to care about.  I can't understand why the wait, why the dragging of feet. It is bad enough that so many kids and adults have Huntingtons, let alone the fact we have so many at risk.. WHY?? .
I sorry to ranting and rave.. Usally I am full of hope and prayers. I just read a artical and it makes me sooo upset that so much money is being spent and yet we HEAR NOTHING on treatments .. instead I get letters asking for more money and if we can sign Kate up for research... WHAT RESEARCH??
I still have hope and faith ... I know the cure is out there... They just can't seem to get out to the victims of HD and JHD. The fact is that if all these so called reseachers would stop looking at the bottom dolllar and WORK TOGATHER , the chances of moving forward would be a reality not just a dream... Why have 67 diffrent research labs that do not share information??? DOSE THIS MAKE SENSE??                                 
I am just so sick of getting request for money, and hearing "we are here for you, our families" we will help, just ask.. yet when a request is made there is no response.. OR worse I hear, "you have to talk to your local chapter. And see what they say, than u come back to us. But we really can't help all our families" The need is too great." oh and by the way, would you like to donate??"
I refuse to understand this.. I won't!! I get how the politics work, and since it is the mighty dollar that runs it all.. it make me sick to my stomch..
I know there is RESEARCH HAPPING  and there IS HOPE.. What I saying, "is that we as a whole,we need to stand up an shout, WE WANT RESULTS! WE WANT HDSA TO SHOW US WHAT OUR DOLLARS ARE BEING SPENT ON.. not some damn report that says x amount of dollrs are given for this and so on.. WE WANT TO SEE THE RESEARCH, WE NEED TO SEE THE RESEARCH"
We live with HD and lose our loved ones more and more each day! No more of these 1/2 hopes.. Give us some concert.. human trials or some thing.. AND FOR THE LOVE OF GOD, SHARE THE RESEARCH WITH EACH OTHER! I DON'T CARE WHO GETS THE CREDIT FOR FINDING SOME SORT OF TREATMENT.. THE ONLY THING THAT MATTERS IS THAT ONE IS FOUND, AND THAT WE CAN HAVE ACCESS TO IT!!

Sorry everyone, please know I do SUPPORT HDSA 100% AND THEY DO MANY GREAT THINGS!! My point here is more toward researchers.. that act like they can't share information!! My daughter will lose her fight with JHD, but God willing, her child will have a chance, if we can get these researchers to come together!!
families of the victims of HD and JDH know exactly what i am talking about. We seize anything that give us a chance to fight... The research about QZ10 has been going on for over 15 years!! and there is no real answer.. dose it help?? dose it not help?? even the Centers of Excellent have different opinions. I even had one DR tell the cure is about 6 months away.. I wish! Can we get the information togather and let our familes know??
there are some excellent bloggers that try to keep us all informed, but that is no enough..Kate's dr is not going to read a blogger and even if he does, getting the right information and making sure it is true, it another hurdle.
So where can a dr get the right information??
Ok i am done.. Have to take Shawn to his OT today and make sure his therapy is working... ( Shawn has aspergers. (they have a basic idea and plan) Even though there such a WIDE range of autism...