MAD... sorry

http://highwire.stanford.edu/cgi/medline/pmid;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...
thanks for all the prayers and hope, and KEEP SUPPORTING HDSA!! THEY WILL ALL COME TOGETHER AND A TREATMENT WILL BE FOUND!

ANOTHER DAY

Sleep kate

 So much time has past.. so much happening.
I wake up some days and just lay there for a momnet before my world get going.. I pray in those moments... I pray for Our Lord's strength..

Kate and Baby Levi(my little nephew)!!

Gabe being Gabe

So many people tell us that We are brave and strong to go thur what we have been with Kate and Shawn (he has Asperger's, a form of autism)But we would tell you that it in God hands, and Kate having JHD does not change who she is.. or how we treat her. Or at least we try to not let it change how we treat her. Is it hard ... yes somedays harder than others. But we know that we are going to be fine. That Our Lord has plans for Kate, Shawn Landon Gabe, Mikey , and Me and Big Mike. We may not understand them but we know that he is holding us and he is our strength.

Kate and Ella opening Christmas presents!!

Gabe and mommy

We rasie money for research,.We keep hope and faith in our lives. What else can we do??
I have seen so many families struggling worse than we ever have or ever will.
I hope this all makes sense... I tend jump from one thing to another..
There are things that make me mad and make me want to scream from the rooftops...
1. I HATE HUNTINGTON'S DISEASE!!!
2. I HATE FEELING HELPLESS WHEN MY CHILD HURTS.. ANY OF MY CHILDREN... FOR ANY REASON!!

shawn and mommy.. Shawn is not so happy

3. I HATE STRESS. IT MAKES ME FORGET MY BLESSINGS AND MAKES ME REACT IN NEGATIVE WAYS

My husband and kids mean so much.. they make me smile, they complete my life.. I thank God for them everyday.

Kate eating at IHOP.. when we found out she is having a baby girl!!

  
I can tell you I get frustrated on wading thur all the information about JHD and HD, the trials, what is true and what is wishful thinking, and most of all the lack of reseach being published and put out to people. I get upset with all the policictes of the research and people arguing with each other... WHY?? becasue we are all fighting for the the same end resulte... a treatment for JHD and HD!!! I get soooo angery about that. We should be able to come togather and rasise awarness and keep the funds up... But instead I hear and see people with so much confusion and 1/2 truths.. I wont go into deatil.. It just insane to think about other groups( cancer, heart austsim, all wonderful grups) and yet we are so closed up... Even to the point of pushing away people who suffer from HD.. What do i mean you ask...
I mean this....1. it should not matter if u are hd or jhd... 2. whether you have been tested or are at risk, showing signs or gene positive.. U should NEVER be afraid of talking to people and hiding is not a optioon.. I I fight not just for Kate.. But for anyone who has felt the effects of HD/JHD!! I understand that HD was not talked about so much in many familes.. that so many people hid becasue the behaviors.. So can we keep the momention of so many that have fought to bring hd to the "main stream" 
to name a few 
                      1. Jane Mervar and her GIRLS! jhdkids.com
                      2. Gene Veritas and his wonderful BLOG www.curehd.blogspot.com/
                      3. Katie Moser -firstgiving.com/fundraiser/katharine-moser
                      4. Button boy, Landon Hansen http://www.facebook.com/ButtonBoys
                      5. James Valvano- wehaveaface.org
                      6. Rebecca Rose and her granddaughter- Kathleen 

I know there are hundreds of others.. all fighting to raise awrness and fight for loved ones.. 
I know we have hope, but we need people to scream so that huntington's is as wide know as cancer!! Please forgive me if I did not name you. U are not forgotten and U ARE APPRECIATED!!


So when peopl look at me and say how can you talk about what is happening to your daughter with out breaking down?? I say because She is LIVING.. she is fighting.. and by TALKING ABOUT JHD AND HD it the only damn way I can fight back...
I am tired of people saying "yeah, that needs to be done" and waiting for some else to do it...
Is JHD and HD sad?? WELLLL DUH.. yes it is.. but there is always hope ...
We prepar for war but we pray for peace!!
So i am done fussing for now... I am frustreated at what read at times at how SLOW it seems the research is taking place.. yet I keep going..
I love the people that have entered my life due to HD... (many blessings and love to u all)
But some day soon I would love to receive the message that a treatment is being tried out on humans for HD and JHD.. and
finally before i go Home to our Lord.. I pray that there a working Treatment to slow HD down or at least combat it ... 

OH AMD BEFORE I SIGN OFF... HAPPY 7TH BIRTHDAY TO OUR BUTTON BOY..
.LANDON EUGENE HANSEN