Fundraising lies??

So the HDSA collects money from the community in walks and other fundraising events, said that the money goes to research. What little of the money goes to the research part, but now with CHID doing the research... what does the HDSA do for people like us who are in need? When are they going to tell us what they are doing for their "families", the people who are suffering now?
The 7% allocated to research in the 2009-2010 Annual Report from the HS..which means out of every $100 sent to hdsa will only $7 be used for research and the $93 go to other parts.why such a low amount for research? This that not the HDSA purpose. This is what we need for a cure. Also if everyone says they want their full $100 donated going to research will that be done? Won't that then exceed the 7% allocation. What does hdsa do then??
They have lied to the community since 2006 and state that they do give most of the money to research.But their numbers show different!

ANger.. yep .. it is funny how money and loved ones can cause that so easily.. I cant understand why more money is not going in to research??

Tears for the people who we have lost!! and for those who cant see to see it from our view!! tears
my fund raising efforts are for the JHDI and faceless no more...

this their own report.. check out the pie chart : http://www.hdsa.org/images/content/1/5/15081.pdf

call them 1-800-345-HDSA (4372)or 212 242 1968

write them
National Office
505 Eighth Avenue, Suite 902
New York, NY 10018
212 242-1968
hdsainfo@hdsa.org


God- help me to accept the things i can not changer. AND THE COURAGE to change the things I can! amen

go from here

So where to go from here??
Keep raising awareness.. I cant believe that a dr actually thought that Huntington's Chorea and Huntington's Disease were different and one was genetically passed on and the other was not!! wow..
WE NEED MORE PEOPLE SPEAKING OUT!
DO NOT BE ASHAMED.. it makes me so sad when i hear people say well we didn't talk about cause we just hid from it.. how lonely and scary.. for the hd positive and the other family members..

Kate says when the time comes she would like to place in a "home".. but there is no way in hell that i will bring her some where far away.. actually i don't think i could be strong enough to bring her any where.. Those family that do fine placement. they are brave, the choices they make are much harder than what anyone knows!.. me welll not so much..

Also found out to that if a child is disable before 18 than they collect off the parents social security.. Check this out guys it may bring so much needed extra cash to you instead of the ssi amount.


23Then shalt thou walk in thy way safely, and thy foot shall not stumble. 24When thou liest down, thou shalt not be afraid: yea, thou shalt lie down, and thy sleep shall be sweet. 25Be not afraid of sudden fear, neither of the desolation of the wicked, when it cometh

learning

this is a wonderful site: learning and helping: anyone with HD/JHD
The_HD_Relief_Fund

www.deshalamar.org

I hate learning more about JHD... yet I love talking to people. and learning how i can help..

Thursday are are hard for all of us.. Shawn has OT in Sioux Falls and it is always busy and insane and often times over whelming... Mikey came with.. Him and Joe had me giggling just like they used to... Crazy teenage boys.. :)
Kate was home most of the day.. I learned today that I cant ask her to watch the bulldogs.. I not sure if she forget or what.. or if she she doesn't want to..I have no idea..

Her boyfriend called to Iowa city and learned that I wasn't lying or just being a over protective mom.. I think is scared him.. But he says he wants to do what he can for her.. I am glad he called.

Kate played with Gabe this am.. hearing them two giggle today warmed my heart..

it is funny how i get frustrated with her.....but i guess that is being mom..

this is a wonderful site: learning and helping: anyone with HD/JHD
The_HD_Relief_Fund
www.deshalamar.org

Philemon 1:3 Grace to you, and peace, from God our Father and the Lord Jesus Christ.
I thank my God, making mention of thee always in my prayers,

Panel at USD

So today Kate and I traveled to Vermillion SD..We meet up with Betty Margaret and Lorraine and Pete from the HD support group. We served as a panel for first year medical students to learn about HD and JHD.. It was very nerve racking.. yet very nice.. the students asked questions.. It seems they related to Kate due to her age. She answered many questions.
I am so proud of her.
I love road tripping like that with "MC KATE".. she controls the music..I love the memories we are making.. We giggled about some stupid things she rolled her eyes and me and she laughed with me.. it was a beautiful day... Thank you God for Tod

"now may the God of Hope fill you with all the Joy and Peace in Believing,So that you will be abound in the Hope by the power of the Holy Spirit" Rom 15:13

So another day.. We received more stuff int mail for the auction! .. I pray that people will come and learn about JHD/HD...
The doon press emailed and asked to interview Kate.. I said yes..She may get upset with me.. But we can deal with that when the time comes...

:)
God will show me my path



Proverbs 3
13Happy is the man that findeth wisdom, and the man that getteth understanding.
14For the merchandise of it is better than the merchandise of silver, and the gain thereof than fine gold.
15She is more precious than rubies: and all the things thou canst desire are not to be compared unto her.
16Length of days is in her right hand; and in her left hand riches and honour.
17Her ways are ways of pleasantness, and all her paths are peace.
18She is a tree of life to them that lay hold upon her: and happy is every one that retaineth her.
19The LORD by wisdom hath founded the earth; by understanding hath he established the heavens. 20By his knowledge the depths are broken up, and the clouds drop down the dew. 21My son, let not them depart from thine eyes: keep sound wisdom and discretion: 22So shall they be life unto thy soul, and grace to thy neck.23Then shalt thou walk in thy way safely, and thy foot shall not stumble. 24When thou liest down, thou shalt not be afraid: yea, thou shalt lie down, and thy sleep shall be sweet. 25Be not afraid of sudden fear, neither of the desolation of the wicked, when it cometh

Hope

We have hope.
Hope for peace.. we Have peace because we have hope.
When the world is insane and troubles over come us.. i lift up the worries to God..
and When all is well and good. I lift up praise for all his Blessings!
So I rest easy in that HOPE

and hope for a treatment for JHD
http://www.pbs.org/wgbh/nova/body/rnai-cure.html

http://www.wehaveaface.org/Help4HD.html

Psalm 119:114
Thou art my hiding place and my shield: I hope in thy word.

a bit over whelmed today.. but God will hold us.

Kate's Kronies: it 4 am ...

Kate's Kronies: it 4 am ...

it 4 am ...

So it 4 am.. Gabe is sick with flu.. i am sitting waiting for him to wake up and vomit some more...
Kate keeps wanting to move out .. I keep telling her she can't be alone. She is struggling with that.. it Makes her very angry.. I wish i could help her..We have talked about her staying with her Uncle, but her Uncle not sure he can let her... not mention that there is very little room since the tow bedrooms are already being used.. But we just keep moving forward..
As for JHD/HD awareness, well got an email from Jane Mervar, she and many others put together JHDKIDS.com , any way she included me! That gave me a extra boost to keep moving to keep "shouting out" about JDH/HD.
We are attending the Sioux Valley Chapter Fall Seminar for JHD/HD. and than going to on a panel for the USD medical school students and Jay Flanagan on Monday, September 26, at 10:15 AM in Vermillion, SD...
So busy weekend!!
oh and Sunday is our wedding anniversary!! 12 years married and 15 together..Pretty insane.. and pretty blessed I am..I have a wonderful husband and beautiful children!
Gabe is vomiting so better go for now.. but remember awareness.. and remeber Keep fighting

Psalm 16:9 Therefore my heart is glad, and my glory rejoice: my flesh also shall rest in hope
God Bless and KEEP PRAYING

It's all about awareness!

jhdkids.com

http://www.wehaveaface.org 

 http://www.hdsa.org/national-convention/pastpresentations/2011-presentations/ncqa1.html

http://vimeo.com/28043836


Links to learn... links in cause our kids are not enough to have u help us fight!!
If it were u r child... wouldn't you do it? fight till every child had a chance??? That what I am doing my heart know that Kate will leave us... But my mind says.. that we will keep fighting for Kate and all the other Kids.. all the one's who past before those who are suffering now and those who are scared of tomorrow.. That why we write letters, and speak till people are sick of hearing about jhd and HD.. and we keep going!! Cause some where the treatment and/or cure is reach able!

than Jesus said ,"come to me,all of you who are weary and carry heavy burdens, and I will give you rest. Take my yoke upon you. Let me teach you, because i am humble and gentle at heart, and you will find rest for your souls. MAtt 11:28

Katelyn's story-Kate's Kronies: Sept...

Katelyn's story-Kate's Kronies: Sept...

Sept...

We are busy getting ready for Kate's silent auction and waffle breakfast. We have some items already here and ready to go. We are hoping to raise enough money to be able to buy Kate a bed and a few other items.. such as a reader that will read books to Kate out loud. We have been truly blessed with all the love being shown to us..
I will have a list of items posted here later this month.
We also have t-shirts for sale that read Kate's Kronies Fighting Juvenile Huntington’s Disease jhdkids.com If you get a chance check it out. they are 10.00 each and are purple or blue.
I thank God for Jane and Jacey for putting together the website, It is a wonderful way for people to learn and help find a cure. :)
I am also trying to put together a book for help for families like ours.. ideas and resources for help.
Many people ask how is Kate doing.. and it has not been easy. Physically :She is having more and more tremors. Her balance has been affected, along with her swallowing.. Those are the easy parts to deal with..
the hard parts is the sever mood swings and personality changes we deal with. She is not taking her meds and she very moody.. I question some of her Choices yet i Know i must let her live and enjoy life. I worry about her safety, as she struggles with Life choices.
My heart breaks when we have a break down. She is so mad at us for moving all of us together. And I am too..We keep praying and For God is with us.
Kate will be going for another swallow test and in Oct she has appointment in Iowa City.
I am going to keep fighting for research.. not just for Kate but for all the kids and their families.. I truly believe that if we can crack the JHD than the cure for both with be found.. or at least a treatment... SO thing to give families hope...
Landon is still collecting cans for research. He is still trying to kick jhd butt.
thanks for reading and keep the faith-

FOR THOSE WHO TRUST IN GOD ,WILL NOT GROW WEARY....

Tara Turn (Kate mom

I will be writing from now on.. Kate is struggling with having to move back in with us and losing her Independence. I cant say I blame her I would too.