huntingtonsatrisk : Messages : 6737-6766 of 7039

Hey Guys! :)

I am not sure if you remember me (some will from chatting on Yahoo
Messenger) I used to use the group quite frequently a few years
back.  My Mum is getting much worse these days so I have a lot less
time on my hands.  Always check back to read up on stuff though.

I am now 20 & tested positive for HD in August this year.  The news
took a while to sink in but I aam getting there now, all have our bad
days though hey!

I have been busy focussing on my training as I am doing the Great
Wall of China Trek to raise money & awareness for Huntington's
Disease.  If anybody is willing to sponsor me then please check out
my page online: www.justgiving.com/team_cure_hd
Would really appreciate it.

Cheers, take care all,
Ashlee xx

PS - I am still about on Yahoo & MSN Messenger on the same addys:
MSN: ashleeduffy@...
YIM: ashlee_d17

#6765

From: "Michelle Routhieaux" <whatnomuffins@...>
Date: Sat Nov 1, 2008 3:26 am
Subject: Re: [huntington's at risk] Rikki's 1st Angelversary

mrouthieaux

Offline

Hi Sue,

I just tried to light a candle on the site, but it wouldn't even let me view the site. I could see it pop up but then was redirected to a Microsoft site telling me that I needed a license to hear the song because it was "protected" when it was uploaded and that I can't get the license because 10 people have already downloaded it. What? I'm frustrated and confused. Is there another way I can get to the site?

Michelle

-- "Sue" <sue_twin2@...> wrote:

Please take a moment to visit Rikki's Memorial web site today and light a candle. It is an incredibly beautiful tribute to Rikki by her wonderful family.

Remembering Rikki - An HD Angel

With fondest love to all my dearest friends here,

Sue

_____________________________________________________________
Click here to find the perfect picture with our powerful photo search features.

#6764

From: "Mr. Adams" <old_oak_2005@...>
Date: Wed Oct 29, 2008 6:10 am
Subject: Yahoo New Profiles

old_oak_2005

Offline

Yahoo New Profiles

I wanted everyone to know that Yahoo has Now a new profile setup. If
you have
looked at any ones profile lately you will see that the old style is
gone.

We have no choice and since this changed on Oct 17, 2008 then you all
will need to update your profiles.

Just something I seen thaught I moght Share It
Kevin
(AKA)kevin_adams_us

#6763

From: huntingtonsatrisk@yahoogroups.com
Date: Wed Oct 29, 2008 5:04 am
Subject: Birthday Reminder

huntingtonsatrisk@yahoogroups.com

Reminder from:		huntingtonsatrisk Yahoo! Group

Title:		Steves Birthday

Date:		Thursday October 30, 2008
Time:		All Day
Repeats:		This event repeats every year.

Yahoo! Greetings:		Send a Yahoo! Greeting
Yahoo! Shopping:		Browse Yahoo! Shopping Gift Guide

Get reminders on your mobile, Yahoo! Messenger, and email. Edit reminder options

#6762

From: "Sue" <sue_twin2@...>
Date: Mon Oct 27, 2008 2:00 pm
Subject: National Society of Genetic Counselors' Conference

sue_twin2

Offline

I thought this article may be of interest:

Adapting To Life With The Risk Or Reality Of Genetic Disease: Genetic Counselors Suggest Ways To Help Patients Cope

Article Date: 27 Oct 2008

If you are afflicted with a genetic disease - or at risk of developing one - how do you handle it? Do you tell your loved ones? What is the best way to cope? If your loved one has a genetic disorder, how do you best adapt?

New research funded by the National Human Genome Research Institute of the National Institutes of Health and presented here at the 27th Annual Education Conference of the National Society of Genetic Counselors, suggests that those who discuss their condition with friends and families, and caregivers who feel some measure of control, adapt best.

To tell or not to tell a dating partner

In-depth interviews conducted with 15 women and 16 men with cystic fibrosis (CF) found that adults overwhelmingly disclosed their diagnosis to their dating partners, although they selectively chose certain information to disclose.

The first disclosure often was limited to the immediate medical aspects of the condition. As patients grew closer to the partners, they often shared their fears or concerns, positive aspects, financial aspects or reproductive implications of having CF.

Telling a partner was often motivated by a desire to be honest, and influenced by the seriousness of the relationship. After talking about their diagnosis, many patients described feeling closer to their partners.

Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system.

The research was presented by Jaclyn Douyard, ScM, a genetic counselor at Tufts Medical Center, Boston.

How caretakers adapt to caring for loved ones with a genetic disorder

A survey of 324 caregivers of children with autism spectrum disorders (ASD) found that caregivers who felt some measure of control over the disorder adapted best to the children's condition. The findings of the study offer potential insight into how genetic counselors can help caregivers.

As a group, the caregivers felt they had a high level of control over a child's medical care and treatment. Caregivers cited their ability to choose the providers they wanted to work with, and their feeling of a sense of partnership with those health care providers in making decisions regarding their child, as two important aspects of this type of control.

One of the most important predictors of a caregiver's level of adaptation was their sense of long-term control over their child's ASD. Two elements that may be important in enhancing long-term control are reducing uncertainty and enhancing optimism about the future.

The authors noted that genetic counselors can play an important role in minimizing uncertainty by helping their clients have an accurate understanding of what scientists know - and don't know - about autism. This can reduce the uncertainty caused when caregivers do their own research and worry that there are treatments or cures of which they are unaware.

Caregivers with a feeling of optimism often cited their ability to focus on small, day-to-day progress in order to avoid feeling overwhelmed by the uncertainties that the future may hold. This research illustrates the ways in which genetic counselors can play a critical role in helping clients adapt to having a child with a chronic condition, even when much remains to be learned about the genetics of that condition.

The research was presented by Katie Voss, ScM, clinical services coordinator, Center for Autism and Related Disorders, Kennedy Krieger Institute, Baltimore.

Huntington's disease - how do people adapt to living at risk?

In a study of 191 individuals at risk for Huntington's disease (HD) (55 had tested positive for HD and 136 were at risk because of family history), individuals, on average, disclosed their status to nearly 84 percent of the people in their social network, while more than 15 percent had not disclosed their status to anyone.

Telling others about their status and the number of years an individual had known his or her status were factors that had a positive effect on adaptation to living at risk for the disease.

Huntington's is an inherited, degenerative disease that damages nerve cells in the brain. As the disease progresses, patients experience uncontrolled movements, emotional disturbances and a gradual loss of mental abilities.

The research was presented by Jessica Young Adcock, ScM, a genetic counselor with the Harvey Institute for Human Genetics, Greater Baltimore Medical Center. Co-researchers are from the National Human Genome Research Institute and the Johns Hopkins University Bloomberg School of Public Health and School of Medicine. This research was supported by the Intramural Research Program of the National Human Genome Research Institute, National Institutes of Health.

About the National Society of Genetic Counselors

NSGC is the leading voice, authority and advocate for the genetic counseling profession. Membership represents more than 2,300 masters-level health professionals, most of whom provide direct patient care (totaling over one million visits per year). Members are employed in a wide range of clinical care, academic, research and biotechnology settings, and are located in every state of the U.S. and internationally. The organization is committed to ensuring that the public has access to genetic counseling and genetic testing.

National Society of Genetic Counselors

__________________
Sue (aka sue_twin2)
Owner www.thehdsc.org

#6761

From: "Sue" <sue_twin2@...>
Date: Sat Oct 25, 2008 12:58 pm
Subject: Rikki's 1st Angelversary

sue_twin2

Offline

Please take a moment to visit Rikki's Memorial web site today and light a candle. It is an incredibly beautiful tribute to Rikki by her wonderful family.

Remembering Rikki - An HD Angel

With fondest love to all my dearest friends here,

Sue

#6760

From: "Terry Hagopian" <rxforlife@...>
Date: Thu Oct 23, 2008 3:16 pm
Subject: Re: [huntington's at risk] My sister

whynotandwha...

Offline

what is MRSA, I have a mother 74 who lives alone with HD.

She is in denial and I was going to do a conservatorship for her

but they said she has no documentation of this illness and I would

lose in court.

I too am a strong woman of Faith and continue to Pray for Wisdom

in this Season.

Gods Blessings,

Keeping you in Prayer

Terry

From: signingsis

Sent: Wednesday, October 22, 2008 9:46 PM

To: huntingtonsatrisk@yahoogroups.com

Subject: [huntington's at risk] My sister

It has been a long time since I've posted. My sis Dawn who had HD
passed away on Sept 15th. She has been in a nursing facility for just
about a year. She took a fall (well 1 of many but this time she didn't
bounce right up as she usually did) and hit her head on the floor of
the apt she shared with our mother and her daughter. Knocked herself
out cold she did finally recover from that but could no longer walk or
feed herself etc. To make sure she had the care she needed we put her
in a nursing facility and they were very good to her. Then she got MRSA.
Since she really didn't have a life to fight for we didn't fight the
MRSA but had Hospice come in and make sure she was comfortable.
Thankfully my brother and family and our cousins from NY were able to
make it down to be with her while she was still not only aware of what
was happening but able to respond (though in a limited sense).
We will miss her. But have a strong faith that we will see her again in
a beautiful new world with no more suffering, sickness or death (Psalm
37:11,29;Isaiah 33:24, Revelation 21:3,4)

One of my co-workers set up a website through firstgiving.com in her
honor so that donations could be made to HDS. What a thoughtful
gesture! :) Here's the URL if you'd like to see the site or even use
the idea to set one up to honor another HD patient.
http://www.firstgiving.com/4marthassister

Reply | Forward | Messages in this Topic (3)

#6759

From: "zippy26200" <zippy26200@...>
Date: Thu Oct 23, 2008 11:38 am
Subject: Re: brain donation

zippy26200

Offline

--- In huntingtonsatrisk@yahoogroups.com, signingsis <no_reply@...>
wrote:
>
> I looked into having my sister's brain donated to help in finding a
> cure for HD but got the info too late. If this is something that
anyone
> would like as an option I have a contact for you.
>
>
> Beth Marten
> Brain Bank Coordinator
> Marten.Beth@...
>
hi has there anyone donated a brain yet were  are yous  and whats it
intail

#6758

From: signingsis
Date: Thu Oct 23, 2008 4:52 am
Subject: brain donation

signingsis

Offline

I looked into having my sister's brain donated to help in finding a
cure for HD but got the info too late. If this is something that anyone
would like as an option I have a contact for you.


Beth Marten
Brain Bank Coordinator
Marten.Beth@...

#6757

From: signingsis
Date: Thu Oct 23, 2008 4:46 am
Subject: My sister

signingsis

Offline

It has been a long time since I've posted. My sis Dawn who had HD
passed away on Sept 15th. She has been in a nursing facility for just
about a year. She took a fall (well 1 of many but this time she didn't
bounce right up as she usually did) and hit her head on the floor of
the apt she shared with our mother and her daughter. Knocked herself
out cold she did finally recover from that but could no longer walk or
feed herself etc. To make sure she had the care she needed we put her
in a nursing facility and they were very good to her. Then she got MRSA.
Since she really didn't have a life to fight for we didn't fight the
MRSA but had Hospice come in and make sure she was comfortable.
Thankfully my brother and family and our cousins from NY were able to
make it down to be with her while she was still not only aware of what
was happening but able to respond (though in a limited sense).
We will miss her. But have a strong faith that we will see her again in
a beautiful new world with no more suffering, sickness or death (Psalm
37:11,29;Isaiah 33:24, Revelation 21:3,4)

One of my co-workers set up a website through firstgiving.com in her
honor so that donations could be made to HDS. What a thoughtful
gesture! :) Here's the URL if you'd like to see the site or even use
the idea to set one up to honor another HD patient.
http://www.firstgiving.com/4marthassister

Reply | Forward | Messages in this Topic (3)

#6756

From: "Heather Dugdale" <i_am_miss_world@...>
Date: Thu Oct 23, 2008 1:54 am
Subject: Everyone needs a power of attorney

I_am_Miss_World

Offline

We went to the power of attorney conference. We learned a lot. It was
really good. It was 4 hours long. We need to come up with a will. We
want things worked out. We are working on a living will. Trevor will
be my representive. My Dad will be my alternate represantive. Karen
will be my monitor. We have to call them and make sure they want to
be. My Dad is there in case Trevor gets sick. Karen is there, they
need some to support my Dad's decisions or it won't be legal. We have
to get in touch with a lawyer here so Trevor can take care of my
health care, when I get to sick to make decsions on my own. I was the
only person there who wanted to live. I am 25 years old. Why would I
want to die early? I want all treatments. Feeding tubs. Palliative
care , if I get there. I want them to extend my life as much as
possible. I will be emailed this info from the great lady that had
the meeting. I will put it up as soon as I get it. Trevor found a
caregiver group that he will be joinng. They make sure he won't burn
out. I wished I had this when Alice made the decisions for me and
ditched me in the hospital. This way my Dad and Trevor and my Dad's
girlfriend can do what's right. Without making these, it is so hard
for caregivers to get the right to look after when you get sicker,
and can't make decisions any longer. It is good to plan ahead.

http://heatherdugdale.angelfire.com/

#6755

From: "Sue" <sue_twin2@...>
Date: Wed Oct 15, 2008 10:40 am
Subject: Re: Web-Savvy Seniors Plumb More Regions of the Brain During Internet use

sue_twin2

Offline

Using the web helps us fight dementia.

As the link in Heather's post doesn't work, please use this one instead:

Sue

#6754

From: "Heather Dugdale" <i_am_miss_world@...>
Date: Wed Oct 15, 2008 2:11 am
Subject: Web-Savvy Seniors Plumb More Regions of the Brain During Internet use

I_am_Miss_World

Offline

Using the web helps us fight dementia.
http://www.webmd.com/brain/news/20081014/surfing-the-web-stimulates-
older-brains?ecd=wnl_nrn_101408

#6753

From: "Dave Hodgson" <SpikeTDog@...>
Date: Tue Oct 14, 2008 1:29 am
Subject: HDSF Quilt Project-Phase IV?

spketdog

Offline

Many people have contacted Susie and I about a Phase IV HD Quilt.  Perhaps
it's time to think about putting together another one.  If you are in
agreement let either Susie or myself know.  We would need a volunteer to
collect the quilt squares as well as a volunteer to put the quilt together.
In the past, both Annette Williams and Marie Nemec have come through with
volunteers who have professionally assembled the quilt at no charge.  Both,
along with Marie's husband, Ron, also assembled the quilt bio's and pictures
that accompany each of the first 3 quilts.  If you're new to our on-line
support groups, go to this link to find out about the HD Quilt Project:
http://huntingtondisease.tripod.com/hdmemorialquilt .  For those of you that
have attended the national HDSA Conventions, I'm sure you'll agree what a
powerful statement each of the quilts makes.
Peace and love
Dave Hodgson

Illinois Chapter TEAM HOPE-Walk For The Cure
http://www.HDWalk.org
Ill. Chapter-HDSA Web Page
http://www.hdsa-il.org
Sponsor Dave & Susie's Walk
http://www.firstgiving.com/DaveandSusie

#6752

From: "Jean E. Miller" <jemiller@...>
Date: Thu Oct 2, 2008 11:37 am
Subject: OCT 2008 - Results of Repligen's Preclinical Study with HDAC Inhibitor in HD - HDDW Article

hdcureit

Offline

http://hddrugworks.org/index.php?option=com_content&task=view&id=238&Itemid=30

Dr. LaVonne Veatch-Goodman announced yesterday that a new article was available on the HDDW website http://hddrugworks.org/ [see her below email] covering the recently published results of Repligen's pre-clinical study with HDAC inhibitor in Huntington's Disease. Below is a direct link to that article.

Worth Waiting For

A review of the results of Repligen's Preclinical Study with HDAC Inhibitor in HD

Posted October 1, 2008 by LaVonne Veatch Goodman M.D.

The full article detailing results of Repligen Corporation's HDAC 4 inhibitor drug candidate was published on-line today in Proceedings of the National Association of Scientists (PNAS). Scientists from Repligen and the University of in California in Los Angeles and Scripps Institute detail exciting results from study of their drug candidate in the R6-2 mouse model. So far, it is looking good . .

===================
Date: Wed, 1 Oct 2008 13:37:44 -0700
From: LaVonne Goodman lavonne@...
Subject: HDAC-4 drug

The full article related to the Repligen press announcement is finally out (reviewed on HDDW today). It has some of the best-ever mouse results for any drug candidate. I think these results are pretty exciting. It might be a good time to sign up at HDTrials.org, so the drug companies will know where we are. L.

#6751

From: "Jean E. Miller" <jemiller@...>
Date: Wed Oct 1, 2008 10:07 am
Subject: HDDW's recent articles of interest!

hdcureit

Offline

http://hddrugworks.org/index.php?option=com_content&task=view&id=233&Itemid=30

There are three new articles up on the HDDW website written by Dr. LaVonne Veatch Goodman. The first talks about what CHDI is up to and provides some insight on why we haven't heard much about their drugs going into trial. The 2nd discusses the importance of all HD families participating in Clinical Trials. Both Part 1 and Part 2 are excellent resources to share with your HD support groups!

Thank you LaVonne for keeping us all informed!!!

Lighting the Candle: Part 1 - Sept 25, 2008 by LaVonne Veatch Goodman

When NASA, the National Aeronautics and Space Administration launches a rocket into space they call it "lighting the candle". This is the awesome moment after years of careful planning, testing and retesting -- they decide to push the ignition button. Launching a drug into clinical trial for

Huntington's is a similar situation. It takes years of science, planning, testing and retesting before decisions are made to start a clinical trial.

How are decisions made to launch a drug candidate into clinical trial? Have you wondered why CHDI has not yet decided to "light a candle" with one of their drug candidates? As a recent observer at a CHDI working group, I had a chance to look at part of what goes into this decision-making process. What does it take to light a candle? It depends . . .

Lighting the Candle, Part 2: Keeping the Flame Alive - September 26, 2008 by LaVonne Goodman M.D.

http://hddrugworks.org/index.php?option=com_content&task=view&id=237&Itemid=30

In the recent HDDW article "Lighting the Candle" of clinical trials for Huntington's, we placed emphasis on the work of HSG, CHDI and other sponsors. Of course they are all important, but in the end the most vital part of clinical trials belongs to the Huntington family community: It will be us who keep the flames alive.

Because no matter who lights the candle, even the best drug candidates, or the most improved clinical trial designs, of the perfect biomarkers -- all of these things will make no difference -- if we don't support and join clinical trials. Here's how to begin . .

Progress on Eye Movement Biomarkers - Sept 19, 2008 by LaVonne Veatch Goodman M.D.

http://hddrugworks.org/index.php?option=com_content&task=view&id=235&Itemid=30

A couple of years ago we reviewed articles on eye movement abnormalities as potential biomarkers for use in Huntington clinical trials. This week we report on a pilot study out of Cambridge, England that combines specific eye movements with a cognitive (thinking) task.

#6750

From: huntingtonsatrisk@yahoogroups.com
Date: Sat Sep 27, 2008 5:05 am
Subject: Birthday Reminder

huntingtonsatrisk@yahoogroups.com

Reminder from:		huntingtonsatrisk Yahoo! Group

Title:		Dawns Birthday

Date:		Sunday September 28, 2008
Time:		All Day
Repeats:		This event repeats every year.

Yahoo! Greetings:		Send a Yahoo! Greeting
Yahoo! Shopping:		Browse Yahoo! Shopping Gift Guide

Get reminders on your mobile, Yahoo! Messenger, and email. Edit reminder options

#6749

From: "Jean E. Miller" <jemiller@...>
Date: Thu Sep 25, 2008 6:11 pm
Subject: HDSA's new link to Charles Sabine CHDI video's

hdcureit

Offline

For anyone who missed it, here's the new HDSA link to Charles Sabine's
stirring opening address at the 2007 CHDI Conference:
http://www.hdsa.org/living-with-huntingtons/faces/past-faces/charlessabine.html

Charles will be one of the Keynote Speakers at the 2nd Annual Huntington's
Disease Clinical Research Symposium to be held in St. Pete Beach, Florida on
November 15, 2008, along with Russell Katz from the Food and Drug
Administration (FDA) and Jeremy Gruber, Legal Director of the National
Workrights Institute [GINA].  For more info on the HDCRS symposium, see:
http://www.register123.com/event/profile/web/index.cfm?PKwebID=0x12437526bb&varP\
age=home

Lucky me is going because I live here........I can hardly wait to hear him
in
person!  If anyone else will attending, let me know, please.

Love
Jean

#6748

From: "Dave Hodgson" <SpikeTDog@...>
Date: Thu Sep 25, 2008 3:13 am
Subject: Re: [huntington's at risk] Genetic testing articles-please help

spketdog

Offline

Miranda, try this link: http://www.hdac.org/testing4hd/

Dave

Illinois Chapter TEAM HOPE-Walk For The Cure
http://www.HDWalk.org
Ill. Chapter-HDSA Web Page
http://www.hdsa-il.org
Sponsor Dave & Susie's Walk
http://www.firstgiving.com/DaveandSusie

----- Original Message -----

From: Miranda Bodus

To: Huntingtons At Risk Yahoo Group ; HDfamilies Yahoo Group ; Huntington's Disease Online Yahoo Group ; Huntingtons Disease Support Yahoo Group ; Hunt Dis List ; Huntington Yahoo Group ; Huntington's Disease Yahoo Group

Sent: Wednesday, September 24, 2008 9:03 PM

Subject: [huntington's at risk] Genetic testing articles-please help

Hello everyone,

A friend of mine's spouse is considering being tested for HD. I offered to try to track down some information for him about the pros and cons. But more specifically, I'm looking for an article (or articles) written by people who've been at-risk and gone through testing and written or blogged about it as they went through it. I know I've seen this somewhere before, but I can't find it. Could someone please help me locate it?

Thanks,
Miranda

#6747

From: Miranda Bodus <mousiebodus@...>
Date: Thu Sep 25, 2008 2:03 am
Subject: Genetic testing articles-please help

mousiebodus

Offline

Hello everyone,

A friend of mine's spouse is considering being tested for HD. I offered to try to track down some information for him about the pros and cons. But more specifically, I'm looking for an article (or articles) written by people who've been at-risk and gone through testing and written or blogged about it as they went through it. I know I've seen this somewhere before, but I can't find it. Could someone please help me locate it?

Thanks,
Miranda

#6746

From: huntingtonsatrisk@yahoogroups.com
Date: Mon Sep 22, 2008 4:44 am
Subject: Birthday Reminder

huntingtonsatrisk@yahoogroups.com

Reminder from:		huntingtonsatrisk Yahoo! Group

Title:		My Birthday

Date:		Monday September 22, 2008
Time:		All Day
Repeats:		This event repeats every year.

Yahoo! Greetings:		Send a Yahoo! Greeting
Yahoo! Shopping:		Browse Yahoo! Shopping Gift Guide

Get reminders on your mobile, Yahoo! Messenger, and email. Edit reminder options

#6745

From: "Jean E. Miller" <jemiller@...>
Date: Sun Sep 21, 2008 9:52 pm
Subject: HDSa Articles on HDF Research Meetings

hdcureit

Offline

Marsha Miller has published two new articles on HDSA's website. Thank you Marsha & HDSA for keeping us up-to-date!

The Hereditary Disease Foundation's Research Meeting:
The Milton Wexler Celebration of Life Part One

http://www.hdsa.org/research/news/817.html
Marsha L Miller, Ph.D. August 28, 2008

The Hereditary Disease Foundation's Research Meeting:
Imaging and Other Biomarkers Part Two

http://www.hdsa.org/research/news/815.html
Marsha L Miller, Ph.D. September 5, 2008

#6744

From: VADA MERCER <vadamercer@...>
Date: Wed Sep 17, 2008 10:53 pm
Subject: New email address

vadamercer

Offline

Hi everyone,

Following is the new email address for:

Bob and Vada Mercer

Earl Green

vada_mercer@...

I'll still be able to use the vadamercer@... for a while, but am trying to get everything changed over to the new one.

Thanks for your patience.

Vada

#6743

From: Kelly Goodwill <kelmcg@...>
Date: Wed Sep 17, 2008 3:03 pm
Subject: Re: [huntington's at risk] TV House new season to have TWO HD character's

stekgrl

Offline

I know about the first person. I mentioned it last season, but who is
the other person?
--
"All Hail the Power of Bauer."
New York Daily News (24)




On Sep 17, 2008, at 9:18 AM, Jean E. Miller wrote:

> Someone shared this on another group..........there will be two
> people with
> HD in the new season kick off of House!
>
> 'House' Exclusive: Is Lori Petty Thirteen's Worst Nightmare?
> Sep 16, 2008, 04:05 PM by Michael Ausiello
>
http://ausiellofiles.ew.com/2008/09/lori-petty-gues.html?xid=rss-feed-todayslate\
st-20080916-%27House%27+call+for+Lori+Petty
>
> Former Tank Girl Lori Petty is checking into House for a multi-
> episode arc,
> sources confirm to me exclusively. Petty will play a patient with
> Huntington's disease.
>
> Petty's arrival is sure to rattle Thirteen (Olivia Wilde), who, as
> you know,
> was diagnosed with the big "H" in the show's season finale.
>
>
>

#6742

From: "Jean E. Miller" <jemiller@...>
Date: Wed Sep 17, 2008 1:18 pm
Subject: TV House new season to have TWO HD character's

hdcureit

Offline

Someone shared this on another group..........there will be two people with
HD in the new season kick off of House!

'House' Exclusive: Is Lori Petty Thirteen's Worst Nightmare?
Sep 16, 2008, 04:05 PM by Michael Ausiello
http://ausiellofiles.ew.com/2008/09/lori-petty-gues.html?xid=rss-feed-todayslate\
st-20080916-%27House%27+call+for+Lori+Petty

Former Tank Girl Lori Petty is checking into House for a multi-episode arc,
sources confirm to me exclusively. Petty will play a patient with
Huntington's disease.

Petty's arrival is sure to rattle Thirteen (Olivia Wilde), who, as you know,
was diagnosed with the big "H" in the show's season finale.

#6741

From: "Jean E. Miller" <jemiller@...>
Date: Wed Sep 17, 2008 2:45 am
Subject: HDSA 2008 Convention Presentations Available on-line

hdcureit

Offline

The Genetics of HD - Robert Moore
Ethical Concerns of Predictive Testing for Minors - Elizabeth Gettig
Genetic Testing for At-Risk Individuals - Elizabeth Gettig

2008 Convention Presentations

I just noticed that HDSA has uploaded all the presentations from the 2007 convention in Pittsburgh on their website: http://www.hdsa.org/index/convention/2008conventionpresentations.html or click on the below ;-) I took a stab at organizing the list!

Many of these would be excellent for handouts at support groups!

You will need Adobe Acrobat to view these presentations: Download Adobe Acrobat Free Reader

Genetics & Family Planning

Family Planning and Assisted Reproductive Technologies - Elizabeth Gettig

Genetic Discrimination - Cheryl Erwin

Huntington's Disease Basics & Predictors

Huntington's Disease 101 - Sandra Kostyk

Early Predictors of HD: What has Predict-HD Taught us? - Kevin Duff

Symptom Issues in HD

Sexual Issues and HD - Barb Heiman and Sandra Kostyk
Managing Cognitive and Behavioral Symptoms - Robert Moore

Huntington's Disease Psychiatry - Christopher Ross

Juvenile Huntington's Disease

Huntington's Disease: Juvenile Onset - Fredy Revilla
Juvenile Onset Huntington's Disease - Jane Paulsen

Family Issues

Balance, Falls, and Safety in the Home - Suzanne Imbriglio and Katharine Moser

Coping with Stress for Health and Wellness - Bruce Rabin

Health Care Planning - Cheryl Erwin
Making the Decision: and Living with Facility Placement - Judith Fockler

Hospice, Palliative Care, and the Journey of Huntington's Disease - Karen Rose

Medications & Clincial Trials
Complementary and Alternative Therapies for HD - Sandra Kostyk
Medications for Early/Mid Stage HD - Robert Moore

Medications for Movements - Karl Kieburtz
Systematic Discovery of Novel Combination Drugs for Huntington's Disease - Xiaowei Jin
ACR16 for the Treatment of Huntington's Disease - Joakim Tedroff
Overview of Medivation and Dimebon - Sarah Noonberg
Huntington's Disease and Vertex Pharmaceuticals - Jeff Stack

Prequel Multicenter Phase II Therapeutic Trial on Pre-symptomatic ("pre-manifest") HD - Christopher Ross

Better Days Ahead: NYA Clinical Research Discussion - LaVonne Goodman

Clinical Research Discussion in Support Groups - LaVonne Goodman
Taking the Clinical Message Home - LaVonne Goodman
Getting Involved in Clinical Trials - Karl Kieburtz

#6740

From: "Jean E. Miller" <jemiller@...>
Date: Wed Sep 17, 2008 12:59 am
Subject: HD Families - Chance for Ultimate Hollywood Experience - deadline September 30!!!

hdcureit

Offline

For those who are receiving individual messages, attached is the brochure for this event.

Subject: Annual Ultimate Hollywood Experience drawing

Open to: All HD Families

Entry Requirements: Simple - email your application to HDSA

Deadline: Tuesday, September 30, 2007

Almost everyone knows Billy Aaron Brown, an actor who is very active in HDSA and a big supporter of the HDSA National Youth Alliance. Billy has used his success as an actor to raise both money and awareness for Huntington�s Disease. He is an honorary member of the HDSA National Board of Trustees and is Founder of The Marion Dougherty Fund, which is in memory of his grandfather who lost his battle with HD in 1990.

The Marion Dougherty Fund provides families with HD an all-expense paid vacation to Hollywood for an Experience to Remember. Funding is supported by a portion of the money raised each September at the HDSA-LA 5K Walk/Run in Studio City, CA. This year the Walk will be held September 20th [see http://www.hdsala.org/walk2008.htm] or check out Billy's First Giving page http://www.firstgiving.org/billyaaronbrown

Well YOUR chance to enter the 2008 "Ultimate Hollywood Experience" is now!!! Any family living with HD [who submits their application before the September 30, 2008 deadline] will have the opportunity to be selected in a random drawing from all applications received. The winning family will receive:

� Roundtrip Airfare
� Hotel Accommodations on Hollywood Blvd.
� Limo Service to and from Los Angeles Int�l Airport
� Spending cash
� Tickets to Theme Parks
� VIP Studio Tour

This once in a lifetime vacation also includes accommodations for the winning family at 2009 Annual HDSA National Convention in Phoenix!

Meghan O'Donnell, a member of the HDSA National Youth Alliance, and her family were the 2006 winners. Her Mom wrote: "This trip was particularly meaningful for Meghan...she never stopped grinning from the minute she stepped on the plane until the trip ended. Our Days in California were filled with experiences and adventures filled with lot�s of love and laughter."�Kathi O�Donnell, 2006 MDF Recipient

Entering the 2007 MDF Ultimate Hollywood Experience is simple!

MDF Application
Please provide the following information

Name:
Address:
Phone:
E-mail:
Please share your story...:
(additional pages may be attached)

Send your application to:

HDSA, Attn: Alex Roque/MDF
505 Eighth Avenue, Ste. 902
New York, NY 10018

You can email your application to Alex at aroque@.... Just make sure you put "2008 MDF Hollywood Trip Application" in the subject line!

If you have any questions, please contact Alex at 800-345-HDSA ext. 233

PLEASE NOTE: You must re-apply for each year�s drawing. Previous winners are not eligible.

#6739

From: huntingtonsatrisk@yahoogroups.com
Date: Tue Sep 16, 2008 5:05 am
Subject: Birthday Reminder

huntingtonsatrisk@yahoogroups.com

Reminder from:		huntingtonsatrisk Yahoo! Group

Title:		Alans Birthday

Date:		Wednesday September 17, 2008
Time:		All Day
Repeats:		This event repeats every year.

Yahoo! Greetings:		Send a Yahoo! Greeting
Yahoo! Shopping:		Browse Yahoo! Shopping Gift Guide

Get reminders on your mobile, Yahoo! Messenger, and email. Edit reminder options

#6738

From: huntingtonsatrisk@yahoogroups.com
Date: Tue Sep 16, 2008 4:25 am
Subject: Birthday Reminder

huntingtonsatrisk@yahoogroups.com

Reminder from:		huntingtonsatrisk Yahoo! Group

Title:		Brians Birthday

Date:		Tuesday September 16, 2008
Time:		All Day
Repeats:		This event repeats every year.

Yahoo! Greetings:		Send a Yahoo! Greeting
Yahoo! Shopping:		Browse Yahoo! Shopping Gift Guide

Get reminders on your mobile, Yahoo! Messenger, and email. Edit reminder options

#6737

From: "Jean E. Miller" <jemiller@...>
Date: Mon Sep 15, 2008 6:37 pm
Subject: 9-27-08 Illinois area Band-Jam HD Fund Raiser!

hdcureit

Offline

Nancy Fiore, Mark Smrtnik's Mom, asked me to share this with everyone, writing:

This just shows what a wonderful community we live in! My son touches so many people and they continue to support us in everyway possible. I hope you will pass this info on just in case there are HD families in our area on the 27th! Thanks, Nancy Fiore

PS We're also having our 7th annual golf/dinner fundraiser on Thurs, Sept 25th and that too looks like it will be another successful event. Anyone interested in attending can find the details here: http://www.hopeforhuntingtons.org/home.html

Illinois area Band -Jam for HD Research & Illinois CoE

The Highwood All-Stars & Friends

Saturday, September 27, 2008

8:00 PM till ?

Highwood Bar
The Alley Highwood
210 Green Bay Road

Highwood Il 60040
Phone: 847-433-0304
www.bowlhighwood.com

Minimum Donation at door: only $5.00!

Come out and listen/dance to The Highwood All-Stars, Rally Day, Fifth Story, The Ultrasonic Project, and The Buckleys [see links to their Facebook pages, below]. There will also be a raffle, special drinks and more! See details in Kevin's email, below!

=============================
From: Kevin Loesch <kevin02klo@...>
Subject: I need your help...
Date: Monday, September 8, 2008, 3:38 PM

Hello friends and family:

In the past years I have performed in several bands. Many, if not all of you, have come to a show or two over the years. All of which are greatly appreciated. I have another coming up, and for it... I'm asking for your help.

Some friends of mine from local Highwood bands and I have joined together to raise money for Huntington's Disease Research. A friends family has been affected by HD for several years, and its time to help out in any way that we can.

On September 27, 2008, members of Rally Day, Fifth Story, The Ultrasonic Project, and The Buckleys are joining forces to support the cause. The show will be held at The Alley in Highwood @ 8:00 pm. There is a minimum donation of $5 at the door. However, please don't feel limited to only that amount. Any and all donations will be accepted. In addition to our band (The Highwood All-Stars), there will be plenty to keep you entertained. A raffle, (including special offers, and prizes from assorted businesses in town) drink specials, an opening act t.b.a, and much more.

The monies raised provide funding for research at Dr. Rick Morimoto's lab at Northwestern University, Dr. Jeffrey Kordower's lab at Rush University Medical Center and provides funding for the Center of Excellence at Rush University Medical Center in Chicago where the center provides therapeutic and medical support to families with HD.

'When Mark was diagnosed with this horrific disease we could not believe the out pouring of love and support we have received from the community and still continue to do so. I am so proud of the people who know Mark and accept him for the way he is.

Thank you again.'
-Nancy Fiore and family

Below are links to the charity, sent to me by Nancy Fiore:

The Smrtnik/Fiore Family's Hope for Huntington's - the charity we are raising funds for

www.hopeforhuntingtons.org

Huntington's Disease Society of America [HDSA]
www.hdsa.org (Hope for Huntington's directly works with HDSA.)

Please come out, and dig deep. Mark is an amazing, tremendous guy and great friend to all.

Thank You All, and I hope to see you,
Kevin Loesch
The Highwood All-Stars & Friends

PS- feel free to check out the bands with members participating. Matt and I from 'The Buckleys,' Kirk and Mike from 'The Ultrasonic Project,' Rich, Jason, and Mike from 'Fifth Story,' and Pete and Andy from 'Rally Day.'

www.myspace.com/theebuckleys
www.myspace.com/fifthstory
www.myspace.com/rallyday
www.myspace.com/ultrasonicproject