The NY Times article is supposed to come out on Sunday, March 18th. It's not what I expected (I thought it would be more about HD), but it's about testing and living knowing the results. I just hope it helps to create the awareness that we are looking for.
If anything changes, I'll post with a new date.

Okay Katherine,

Thanks for keeping us informed. I'll want to get a copy.

Steve I

I've already bought the NY Times, and it's up on the website. Now I need a drink!!! Happy St. Patrick's Day!

[www.nytimes.com]

Katherine
I just finished reading the article - WoW - you are a very strong, pro-active, focused young lady. I admire your strength and purpose. Keep up the good work and live each day to the fullest.

i think this was a good article, maybe someone somewhere will be more informed about hd. i think katie has a lot of guts and i want to thank her for going public good heavens it's not a std. katie keep the faith !!

Incredible article. Katie, you are amazing! Take care and God Bless you.

Love,

Paula

I enjoyed the article! Katie is a very brave girl and a very great role model for "at risk" young people!
Sandy

Katie - thank you so much for being so open and making sure your illness will not be hidden. The article was wonderful and I am speachless.

The most special part for me was Katie's talking about the annual meeting in Milwaukee last year. I was there also and shared the same feeling of closeness with all there. The dinner had 600 people there and they were all there for HD. There was nothing strange about seeing people all through out the hotel in various stages of the disease. It is one of my most cherished memories. I am looking forward to getting to another one soon.



Stacy-NJ



Edited 1 time(s). Last edit at 03/19/2007 11:23AM by Stacy-NJ.

What good (do we think) will making people aware of HD do?

Are we hoping for:

Quicker reaction to disability claims?
Better Healthcare treatment?

Exactly what will it accomplish?

The response to this article has been overwhelmingly positive. I have people writing to me who have HD in their family, who have a friend with HD, who have never even heard of HD... Doctors, lawyers, students, Bed & Breakfast owners, producers, actors, editors, moms, dads... And they all want to help! Some want to donate money (and I've talked to HDSA, they have been donating!), some want to help with fundraisers and events, some want to offer advice and services, some want to learn more about the disease, some want to create more awareness... Some now know what HD is like, so they understand what their neighbors and coworkers are going through, and want to offer help. Healthcare employees now understand that their residents with HD were not always sick.
The more people who are aware of the disease, the more people who will want to help.
The youth that have e-mailed me are tomorrows doctors, tomorrows politicians, and tomorrows leaders of the world. If they know about HD now, they will remember it in their research, practice, and laws.
We may not have a cure by the end of the week, but we'll have a smarter, more compassionate community.

I try to educate people about Huntington's Disease. My friend's husband died of HD; her oldest child is in the last stages at age 43. My friend has 4 other children. One tested negative, the others have not tested.

For myself, awareness of HD led to my payroll deduction of $10 every two weeks to HDSA, thru the United Way. That's what I'm able to do.

I have another coworker, age 23 from Shelbyville, IN who never heard of HD. Due to the fact that I am her supervisor, she has gotten an earful of education that she didn't expect; I talk about it, I endorse donating to HDSA, I tell her about my genealogy findings. I encourage her to talk to her Indiana family members about HD. Her dad (my age, 50-54) knows nothing about HD, her grandmother never heard of Huntington's Disease. It's a shame in this world.

Katie you are truly amazing! Its fantastic what you have been able to achieve from your story. Makes me think about the posabilities in Australia of a similar story.

The awareness in the wider community is a big area that needs developing...and its brilliant that from your story you have managed to achieve this as well as raise additional funds!

the video is a great way to get the impact of the disease noticed while also acknowledging that these people have been functioning members of our community who have by no fault of there own ended up with this fatal disease

so thankyou for being so brave and inspiring in regards to whats possible!

Michelle

WOW Katie! What an awesome article. You are so courageous for getting your story out there. I am sure it will benefit the HD community very much.

I noticed that you said you don't want to get married or have kids. Have you considered PGD? There are many men out there who would love you for who YOU are, HD or not. And you can have the family that you hoped for. I did! (I'm CAG 42 and have infant twins who are HD Free) I just want the best for you because you seem like a wonderful young lady!

Katie, would you be able to send me Amy Harmon's email? I noticed that she does a lot of health articles and I though she might be interested in another HD story about PGD. If you can, please send it to me at stacybrook@aol.com I'm always trying to get the word out about PGD to protect more kids in HD families!

And by the way if you're looking for more info about PGD, visit my website at www.hdfreewithpgd.com

Take care and God bless you!!!
Stacy

Hi Stacy,
I was looking up the NRP mail address so people could respond to the report when Katy is on. They have an email address to pitch a story....[www.npr.org]

Good luck.


To email about the report when it airs...[www.npr.org]