Donation based on the number of touchdowns scored by the San Diego Chargers

HDSA-San Diego continues to seek your support through other fundraising events and activities. Our featured program this fall is TDs to Cure HD, where you can win unforgettable memories by pledging a donation based on the number of touchdowns scored by the San Diego Chargers.

Click here to learn more and make your pledge!

My Brother has Swine Flu

Lucky's, pink eye, is no more. It went away. He is healthy again. My brother Scott, got Swine Flu. He is off work, and out of School, for a week. It is contagious then. He will also, have the symptoms for a month. He told me, that he did not get brutal symptoms. He did not have the, really brutal fever. He is healthy. He does, not have HD. He can fight. it easy. If it was Gary and I, we would be screwed. I am getting, my Swine Flu Vaccine, next week, the second round. I need to be protected, expecailly, since my Brother has it.

My little Lucky has Pink eye

Today, we noticed, Lucky's eye is pink. There is pus, coming out of, his eye. We think, Jake, might have brought it in. We caught it early enough, we think it is less pain full. He is still very happy, energetic. We have not noticed, a change that way. We will take, him to the VET, tomorrow. Lucky is like, our little boy. We don't like, to see him sick. I am hoping this, does not hurt, him too much. I a very, worried Mommy.

Successfully secured 50 co-sponsors in the U S. House of Representatives for the Huntington's Disease Parity Act of 2009 (HR 678.)

We did it! Because of you we have successfully secured 50 co-sponsors in the U S. House of Representatives for the Huntington's Disease Parity Act of 2009 (HR 678.)

When passed, this important bill will revise the Social Security Administration's outdated criteria for determining disability for people with HD and remove the two-year waiting period to receive Medicare benefits after receiving Social Security disability benefits. Congratulations to all of the HDSA advocates who made this possible.

But the work is not done. While 50 co-sponsors in the House is a great achievement - there's still a way to go. As we now begin to seek a companion bill in the Senate, it is even more important that we continue to show momentum and add more co-sponsors to our important cause. (For a list of co-sponsors

(click here).

If you have not yet reached out to your representative, please take a moment to contact your congressperson and urge them to sign on.

Click here.

Help HDSA keep the pressure on our elected officials by supporting our advocacy efforts. A great way to celebrate this achievement and help the Huntington's Disease Parity Act of 2009 become law is to give a gift in honor of this achievement.

A generous $50 gift from you in recognition of reaching 50 co-sponsors will help us move this bill forward and make a real difference in the lives of many people affected by Huntington's Disease. To make a donation go to:

http://www.hdsa.org/x/5a43132234c18031d42e/t/2e6a95785036c6531187

Thank you for raising your voice for the Huntington's Disease Parity Act of 2009 and supporting our commitment to Help for Today, Hope for Tomorrow for everyone affected by HD.

Sincerely,

Louise Vetter
Chief Executive Officer

Denial

Denial, is a path, where we should stay away from. For, most families it is a safe pace. Never look up, and see, what is going on. That is no way to live. It will never, make you happy. You can't be happy, if you are hiding. Hiding, away, leaves you with nothing. You can't be happy, until, you get up and notice HD. Accept it. HD is there, it is in our families. Accepting it, will, let you own it. Own, your HD. Get, in control. Gain, control, back too your life. Take, back your life. Take it back. Learn to love HD. It is what, we were all given. It is in our family.

HDSA Survey

The Huntington's Disease Society of America wants you to be aware of and participate in a survey that Lundbeck is conducting in conjunction with Kelton Research, a national public opinion research company. The results of the survey will be provided to HDSA to be used in the continued improvement and design of our Program Services. The data will also be used to raise public awareness of the daily challenges facing a family affected by HD. We would greatly appreciate a few minutes of your time to share your valuable insights on HD and its impact on quality of life. Your answers will remain strictly confidential and anonymous. Click here to begin the survey.

Click Here

Live Life

Live your life, they way you want too. Never give in to the torture. Don't doubt, yourself. Never doubt your life. Enjoy it. Love your life. It is the, only one you got. Never give up dreams. Set you goals. Live your dreams. Have fun. Live, like you are dying. Never take your life, for granted. Just live. Learn, to cope. Never, let HD, tear you down. Fight it, kick it out. No fear, belongs here. Your life, is worth, saving. Save yourself, form torment. Save your yourself, from negative, thoughts in your head. Fight, like your life is on the line. Your, life is on the line. Don't give in, too hate. Don't hate your life. Don't hate yourself. Fight, for the light. It is shining brightly. It will calm you down. Never room for hatred. Only, room for love.

Bladder Infection

I have another bladder infection. I sure do get a lot of this. There was no urine, stuck in my bladder. My bladder scan, came back normal. No Catheter, again this time. I hate being on one. Tomorrow, I have bowling. I hope I do as well, as I have been. I am doing, way better, then last year. Maybe, I will get first in the Special O, team. Then on Wed, I go to the Gleaner's. I am hoping, with this new day, they have work there. I have been, really healthy the past week. Every night, when i got to sleep, I get scared. I think about ghosts. This has been going on for the past week. I usually, don't get that paranoid. Whenever, you get scared, ground yourself. I think of Trevor protecting me. He told me that, I would always, be safe from the scary things. You ground yourself by grabbing, something comforting. A blankie, a stuffie, and a person. I also grab Lucky too. Anything, that will protect you and make you feel safe.

virtual care center

For those that aren't aware of this excellent new program for HD families in North Carolina! Note this part - "All NC-CCHD programs are free of charge and funded entirely by charitable donations." Wouldn't it be wonderful to see this type of facility opened up in all major cities in the US!

You can watch the video of this exciting news coverage of this story on the below link to learn how they are pulling together experts from several North Carolina medical facilities to work together to help HD patients and family.

Huntington’s Patients And Families Will Get Help Through Virtual Care Center
http://durhamcounty .mync.com/ site/durhamcount y/news%7CSports% 7CLifestyles/ story/43574/ huntingtons- patients- and-families- will-get- help-through- virtual-care- center
By Julie Henry, NBC17 Oct. 23, 2009

DURHAM, N.C. - There are fewer than 600 diagnosed Huntington's Disease patients in North Carolina, but doctors believe there could be many more who go undiagnosed for years. A new virtual care center promises better access to knowledgeable doctors and to help for families strained, financially and emotionally, by the fatal brain disorder.

Because Huntington's is inherited, most people find out they have it after someone else in their family is diagnosed. Will Brown of Raleigh found out six years ago after his brother was diagnosed. "By process of elimination, we're quite sure it came from my father's side," said Brown. "But he died with no visible symptoms, so it really snuck up on both myself and my brother."

Experts say the onset of symptoms varies from person to person. Brown's brother, who is three years younger, is much more advanced in his disease. Brown, who is running his 33rd Marine Corps Marathon on Sunday, credits his continued good health to being informed about the disease. "As soon as I decided to test, that's when I went looking for information, " said Brown.

Dr. Mary Edmondson sees a number of HD patients in her psychiatric practice and at Duke University Medical Center. As part of the leadership team for the new North Carolina Center for the Care of Huntington's Disease, she is looking forward to having a single point of contact to offer patients and their families. "The center is going to bring together professionals who have specific expertise, including movement disorder specialists, psychiatrists and others who can address the physical, nutritonal and language deficits of Huntington's, " she said.

Edmondson said the number of specialists able to provide care has grown over the 28 years since she got involved, but they are scattered across the state. The center will offer access via the web as well as a telephone advice line to provide referral information. Find out more about the new center at www.nc-cchd. org.
------------ -----
North Carolina Center for the Care of Huntington's Disease
Website - www.nc-cchd. org.
Thank you for your interest in the NC-CCHD. We are currently in the process of building our website to serve Huntington's patients, their families, and the medical community. Please check back soon! If you would like to make a donation, please click the Donate Now button.

The North Carolina Center for the Care of Huntington's Disease is a non-profit organization dedicated to providing access to medical care and assistance to any individual or family in North Carolina affected by Huntington's Disease.

Access to knowledgeable health care has always been a problem for HD families in North Carolina. NC-CCHD will provide crisis intervention services, streamlined access to expert care and genetic testing services, information about research opportunities, family support and caregiver education. As needs arise, NC-CCHD will create partnerships with other organizations that help HD patients and family members - from specialized HD clinics, to support groups, hospitals, nursing care facilities, public charities, government programs and local community resources.

All NC-CCHD programs are free of charge and funded entirely by charitable donations.. Email us at hdinfo@nc-cchd
=======
FYI - Dr. Mary C. Edmondson, M.D. - Psychiatry
Board Certified - American Board of Internal Medicine and Psychiatry/Neurolog yResidency: Duke UNIV. Medical Ctr. 1998-20021004 Dresser Court Suite 107Raleigh, NC 27609Phone: (919)876-3330 / Fax: (919)876-3325

Feeling Healthier

I have been feeling, a lot healthier, this week. No symptoms. They come and go. On Halloween, I am going to a Special O dance. Everyone goes crazy there. There are people that dance, with their walkers. Everyone loves to dance. My Special friends, force Trevor to dance. He hates it. At our Wedding, he was petrified to dance. Trevor got a letter form the College of the Rockey's. They sent him a list of everything, he needs, for that course. I can't believe Trevor is going to become, a Nurse, to look after me. I did get me a great, caring guy. Who wants to do the best, for me. The best, going to School. His Mom and I think, he will make a good Nurse. His Mom, Alice is an RN.

Functional compensation of motor function in pre-symptomatic Huntington's disease.

Functional compensation of motor function in pre-symptomatic Huntington's disease.

Involuntary choreiform movements are a clinical hallmark of Huntington's disease. Studies in clinically affected patients suggest a shift of motor activations to parietal cortices in response to progressive neurodegeneration. Here, we studied pre-symptomatic gene carriers to examine the compensatory mechanisms that underlie the phenomenon of retained motor function in the presence of degenerative change. Fifteen pre-symptomatic gene carriers and 12 matched controls performed button presses paced by a metronome at either 0.5 or 2 Hz with four fingers of the right hand whilst being scanned with functional magnetic resonance imaging. Subjects pressed buttons either in the order of a previously learnt 10-item finger sequence, from left to right, or kept still. Error rates ranged from 2% to 7% in the pre-symptomatic gene carriers and from 0.5% to 4% in controls, depending on the condition. No significant difference in task performance was found between groups for any of the conditions. Activations in the supplementary motor area (SMA) and superior parietal lobe differed with gene status. Compared with healthy controls, gene carriers showed greater activations of left caudal SMA with all movement conditions. Activations correlated with increasing speed of movement were greater the closer the gene carriers were to estimated clinical diagnosis, defined by the onset of unequivocal motor signs. Activations associated with increased movement complexity (i.e. with the pre-learnt 10-item sequence) decreased in the rostral SMA with nearing diagnostic onset. The left superior parietal lobe showed reduced activation with increased movement complexity in gene carriers compared with controls, and in the right superior parietal lobe showed greater activations with all but the most demanding movements. We identified a complex pattern of motor compensation in pre-symptomatic gene carriers. The results show that preclinical compensation goes beyond a simple shift of activity from premotor to parietal regions involving multiple compensatory mechanisms in executive and cognitive motor areas. Critically, the pattern of motor compensation is flexible depending on the actual task demands on motor control.

Not on the face alone: perception of contextualized face expressions in Huntington's disease.

Not on the face alone: perception of contextualized face expressions in Huntington's disease.
have demonstrated that Huntington's disease mutation-carriers have deficient explicit recognition of isolated facial expressions. There are no studies, however, which have investigated the recognition of facial expressions embedded within an emotional body and scene context. Real life facial expressions are typically embedded in contexts which may dramatically change the emotion recognized in the face. Moreover, a recent study showed that the magnitude of the contextual bias is modulated by the similarity between the actual expression of the presented face and the facial expression that would typically fit the context, e.g. disgust faces are more similar to anger than to sadness faces and, consequently, are more strongly influenced by contexts expressing anger than by contexts expressing sadness. Since context effects on facial expression perception are not explicitly controlled, their pattern serves as an implicit measure of the processing of facial expressions. In this study we took advantage of the face-in-context design to compare explicit recognition of face-expressions by Huntington's disease mutation-carriers, with evidence for processing the expressions deriving from implicit measures. In an initial experiment we presented a group of 21 Huntington's disease mutation-carriers with standard tests of face-expression recognition. Relative to controls, they displayed deficits in recognizing disgust and anger faces despite intact recognition of these emotions from non-facial images. In a subsequent experiment, we embedded the disgust faces on images of people conveying sadness and anger as expressed by body language and additional paraphernalia. In addition, sadness and anger faces were embedded on context images conveying disgust. In both cases participants were instructed to categorize the facial expressions, ignoring the context. Despite the deficient explicit recognition of isolated disgust and anger faces, the perception of the emotions expressed by the faces was affected by context in Huntington's disease mutation-carriers in a similar manner as in control participants. Specifically, they displayed the same sensitivity to face-context pairings. These findings suggest that, despite their impaired explicit recognition of facial expressions, Huntington's disease mutation-carriers display relatively preserved processing of the same facial configurations when embedded in context. The results also show intact utilization of the information elicited by contextual cues about faces expressing disgust even when the actually presented face expresses a different emotion. Overall, our findings shed light on the nature of the deficit in facial expression recognition in Huntington's disease mutation-carriers as well as underscore the importance of context in emotion perception

Gladstone And Partners Receive $3.7 Million For Huntington's Disease Research

Gladstone And Partners Receive $3.7 Million For Huntington's Disease Research

The National Institutes of Health (NIH) has awarded a "Grand Opportunity" grant of $3.7 million to a consortium formed with the Gladstone Institute of Neurological Disease (GIND) and the Taube-Koret Center for Huntington's Disease Research to use stem cell technology to better understand Huntington's disease (HD) and to develop potential therapies. The consortium comprises a partnership of five leading Huntington's research laboratories at the University of Wisconsin, Massachusetts General Hospital, the University of California at Irvine, Johns Hopkins and the Gladstone Institutes. The consortium will use induced pluripotent stem (iPS) cell technology pioneered by Gladstone and Kyoto University's Shinya Yamanaka, MD, PhD, to develop human neurons with Huntington's disease characteristics. iPS technology enables stem cells to be generated from skin samples from adults and avoids the ethical issues surrounding the use of fetal stem cells. "One of the challenges of Huntington's (and many other neurological diseases) is that many of the potential therapies that show promise in animal models are ineffective in people. We think that molecular differences between mice and humans may be an important cause for this failure," said Steven Finkbeiner MD, PhD, consortium co-leader and Director of the Taube-Koret Center for Huntington's Disease Research and Associate Director of GIND. "One of the promises of iPS technology is to be able to develop models from Huntington's disease patients that can give us more detailed information about the disease and better predict how therapies could work in humans," he said. HD, which is also called "Huntington's chorea" and "Woody Guthrie's disease," is a devastating inherited, degenerative brain disorder.

More than 100,000 Americans and more than 10 times that number worldwide have HD or are at risk of inheriting the disease from a parent. iPS cells are generated by reprogramming adult cells from skin or other tissues. They are almost identical to human embryonic stem cells with the ability to self-renew for long periods and to differentiate into all cell lineages. More importantly, iPS cells can be generated from adult patients with genetically inherited and sporadic diseases making it possible to study some diseases, such as Alzheimer's and Parkinson's disease, for which the causes remain largely unknown. "HD is caused by a single mutation, which provides an ideal paradigm to generate a panel of patient-specific lines," Finkbeiner explained. "This offers hope that these models can teach us why some patients experience certain symptoms and why some family members develop symptoms later rather than sooner, which then can potentially be used to develop treatments that can act before symptoms appear." Finkbeiner added, "the convergence of a dedicated, collaborative group of committed investigators targeting HD, the need for new treatments based on the root causes of the disease, and the emergence of powerful new technologies herald a truly grand opportunity to make a real difference for those afflicted with Huntington's." Dr. Finkbeiner's primary affiliation is with the Gladstone Institute of Neurological Disease where his laboratory is located and all of his research is conducted. He is also associate professor of neurology and physiology at the University of California, San Francisco.

Michigan Governor Granholm Announces Detroit Will Host 2010 World Stem Cell Summit

Michigan Governor Granholm Announces Detroit Will Host 2010 World Stem Cell Summit

"Summit one of most important life sciences conferences in world"

LANSING – Governor Jennifer M. Granholm today announced that Detroit will host the 2010 World Stem Cell Summit organized by the Genetics PolicyInstitute.

The conference will take place October 4-6,

2010, at the Detroit Marriott atthe Renaissance Center.

It will be co-hosted by Michigan State University,the University of Michigan, Wayne State University, and the MichiganEconomic Development Corporation.

“We have been working to grow Michigan’s life sciences sector as part of ourstrategy to diversify the state’s economy and create jobs,” Granholmsaid. “The World Stem Cell Summit is one of the most important life sciencesconferences in the world.

The selection of Detroit to host the 2010 summitis positive recognition and support of our efforts here in Michigan in thisemerging economic sector.” “Hosting the 2010 World Stem Cell Summit will allow us to showcase theinnovative research that is occurring in the city of Detroit and at Michiganuniversities,” said Detroit Mayor Dave Bing. “Scientists, researchers,government officials and industry representatives from around the world willsee firsthand the great minds and facilities we have in Detroit.”The summit will attract more than 1,200 of the most influential stem cellstakeholders from more than 30 countries, representing the fields ofscience, business, policy, law, ethics and advocacy. There will be 150internationally-renowned speakers, producing a unique international networkdesigned to foster collaborations, economic development, technologytransfer, commercialization, private investment and philanthropy. “We are delighted to bring the 2010 World Stem Cell Summit to Detroit,” saidBernard Siegel, executive director of the Genetics PolicyInstitute. “Michigan is fast becoming a biotechnology hub. Michigan StateUniversity, the University of Michigan and Wayne State University all haveworld-class researchers and outstanding facilities dedicated not only tofundamental stem cell research but also to translating lab work intoeffective treatments and cures.” Presidents of all three universities expressed enthusiasm about the summit. “Michigan State University has a long history of working in a number ofareas in the stem cell field such as bio-engineering, cancer biology, andtoxicology,” said MSU President Lou Anna K. Simon.

“The 2010 World Stem CellSummit will be an opportunity to showcase our work as well as continue, andestablish new, collaborations with our University Research Corridorcolleagues.” “Stem cell research and discovery are of tremendous importance not only toscientists, patients and families but also to transforming our state’seconomy,” said University of Michigan President Mary Sue.

Coleman. “TheUniversity of Michigan is excited to welcome the 2010 World Stem Cell Summitto Michigan.” “As a leader in life sciences research, Wayne State University is pleased tosponsor the 2010 World Stem Cell Summit with our University ResearchCorridor partners,” said Wayne State University President Jay Noren. “Withthe planned opening of the Stem Cell

Commercialization Center at TechTown,Wayne State’s technology park and business incubator, Detroit and Michiganare poised to assume leadership in research in this field of increasing importance to both the biomedical industry and pioneering clinical care.” Covered at the summit will be all areas of stem cell science, disease models, drug discovery, tissue engineering, bioreactors andnanotechnology. There will be progress reports on treatment for cancer,diabetes, spinal cord injury, multiple sclerosis, Parkinson’s disease, ALS,neurological disorders and cardiovascular disease. Panels will discusscommercialization, funding, economic development, regulatory agencyperspectives, law and ethics. The summit also will feature the 2010 Stem Cell Action Awards Dinner wherethe Genetics Policy Institute will recognize organizations and individualswho have most positively impacted the stem cell community. At the 2009summit dinner in Baltimore, two Michigan stem cell organizations.

won awards:

Michigan Citizens for Stem Cell Research and Cures won the EducationAward,

while Cure Michigan won the Grassroots Advocacy Award. The 2010 World Stem Cell Summit

will be the sixth annual conferenceorganized by the Genetics Policy Institute.

Previous summits have takenplace in Houston, Palo Alto, Boston, Baltimore, and Madison, Wisconsin.

HD Documentary in the Works

This film is about the human condition

The story will be told through the experience of people engulfed, enraged, embattled and empowered by the effects of one of the "unknown" hereditary diseases: Huntington's

Our mission is to inform and bring a deeper understanding about HD. But first and foremost this film will be about the stories of the people it involves. These universal human themes will carry the film. They will compliment each other in a delicate and powerful way. Knowledge is power. This film aims to spread both Knowledge and build Power within the HD community and beyond. Through the stories in the film - we will bear witness to the questions, triumphs, struggles and daily life. By sharing stories, the film will spread Knowledge within the HD community as well as strengthen communication, encourage understanding, offer solace, honor the courage of all people affected by HD.

http://huntingtonsdiseasedocumentary.com/index.html

Fun Rythmic Gymansitcs/HART STUDY

Today, I am switching the day, I volunteer. It will now be on Wednesday. I had, fun at Rhythmic Gymnastics. We played with balls and hoops. Next week, is my favourite, ribbons. When I saw the HART study, was in Canada. In Edmonton, which is ten minutes, from my Dad's house. There is a age limit, 30 years old. Gary is 24 and I am 26, my Dad called to see if they would lower, the age and let us in. They could not do it. They told my Dad, that this study is quick and pretty soon, they could lesson, the age limit.They will call when that happens. That is encouraging. We were disappointed, that we could not get in there now. All good things, are worth, waiting for. The hope is still there. We will get in there, it will just take time.

Top 25 Best Foods for Fighting Disease

This amazing article sent to me. Check it out.

Following the health guide pyramid may not be enough when it comes to keeping your body in the best condition possible. There are so many disease and health problems to safeguard your body against, and one of the best ways to put up a wall of defense between illnesses and your health is by getting the right nutrition.

http://onlinenursepractitionerschools.com/top-25-best-foods-for-fighting-disease/

A Study of ACR16 for the Treatment of Patients With Huntington's Disease (HART) in Canada

The purpose of this trial is to compare three doses of ACR16 and determine if ACR16 is effective and safe in the symptomatic treatment of Huntington's Disease.

http://clinicaltrials.gov/ct2/show/NCT00724048?term=HART+CANADA&rank=1

FuRST-pHD Research Project

The Huntington Society of Canada is working with the Ontario Cancer Biomarker Network and Dr. Mark Guttman to conduct research on the development of a Functional Rating Scale for individuals with Pre-Huntington Disease. This research will help with assisting physicians to diagnosis and treat HD EARLIER than ever before, as well aid in documenting the efficiency of drugs in clinical trials. The FuRST-pHD project will be conducting separate focus groups for individuals living in the Toronto, Ontario area who are pre-Huntington disease, early Huntington Disease and caregivers. The purpose of these groups will be to openly discuss which signs and symptoms of HD are worrisome, bothersome or interfere with daily activities. The focus groups are planned for early spring. If you are interested in participating in these groups

please contact Jo Anne Watton at 1-800-998-7398, ext 32.

HDA Shop: 2009 HDA Christmas cards

Each pack is £4 plus 30p UK postage and packaging per pack.
Each pack contains 10 cards of the same design.

http://www.hda.org.uk/shop/christmas.php

Swine Flu Vaccines

We all need the vaccine, With, no immune systom, it can really take a person off. We have nothing to fight with.

Calculating HD Risk

A team of researchers from Erasmus University Medical Centre and Leiden University Medical Centre in The Netherlands have discovered a method of calculating an individual’s HD risk without taking any tests, providing genetic counsellors with another valuable tool.

The study found that the majority of people at risk for HD are often afraid to learn more about their genetic status, and their risk of HD may be based on whether the person is a child of an affected individual (50-percent risk) or the grandchild of someone with HD (25-percent risk). Instead, the Netherlands-based project is proposing a better estimation of risk based on factors like current age, length of the CAG repeat in the HD gene in close relatives, information at the age of onset and test results in children. The formula for determining residual risk status (RRS) is provided in a simple spreadsheet format that can be used by genetic counsellors.

Before undergoing a predictive test for HD, the study suggests that individuals may want to learn their residual risk status (RRS) based on their present age and unaffected state. The results can help genetic counsellors better prepare their clients in a pre-test situation or they may influence the decision process, helping an individual decide whether to either proceed with or delay predictive testing.

Before the RRS can be calculated, it must be determined that the individual is asymptomatic for HD, preferably through a neurological exam. Next, the CAG repeat length must be estimated based on the CAG repeat length of the individual’s parent, assuming the HD gene has been inherited. The parent’s age of onset (AO) or a sibling’s AO or CAG can be used if the parent hasn’t been tested. The gender of the affected parent is also important since studies have shown that a gene from the paternal side usually results in a larger CAG repeat length.

The final step is based on the probability that the individual is still symptom-free, given the estimated repeat length. At this point, the RRS can be calculated, though counsellors may also consider any children who have been tested and shown to be gene negative.

Data was drawn from 755 individuals enrolled in the Dutch cohort study, tested between 1993 and 2000, with a CAG repeat length of more than 35. The study’s subjects came from 344 different HD families of which 614 were affected and 141 were asymptomatic gene carriers.
Based on the absence of symptoms and family history, the RSS tool can increase the amount of information that genetic counsellors can offer their clients. The tool is an effective one in helping individuals make a decision surrounding predictive testing – whether to test soon or postpone it for a few years.

A copy of the study can be found at

http://www.springerlink.com/content/gx2p65128031m416/?p=cfe5add3370c458db60c5276931e729b&pi=9.

Slide show: How genetic disorders are inherited

Slide show: How genetic disorders are inherited

http://www.mayoclinic.com/health/genetic-disorders/DS00549

Medication errors: Cut your risk with these tips

My Dad calls me whenever Gary needs a change. I helped my friends, find meds that work. Just Google them. You will, find a lot of info on there. I have had 5 adverse reactions to meds. The Risperidone, made me not breathe right, and pass out at the Hospital. The Seriquil, made me angry ad irrational It was the thing, they were to solve. Whenever my DR's, change my meds, they never know what to give me.
Reduce your risk of medication errors by asking questions and being informed about the medications you take, including possible side effects and adverse interactions.

http://www.mayoclinic.com/health/medication-errors/MY00815

Great Bowling Day

Today, I did extra good. I got 3 spares. I had 100 scores. It is so fun. I have the best coach, Trevor. He knows me and what I can do to get better. I can't wait for Rhythmic Gymnastics, this Thursday. It will get more busy, when floor hockey, starts. I love being in the Special O. Jake, our cat visitor is underweight again. My neighbor, can't afford food for him. We have been feeding him. He was gone two weeks and starving. You can see his legs protruding. We are feeding him a bit of food and a bit of milk. We can't feed feed him a lot. It makes an animal sick. The milk, is to help him, get strong again. I don't want to take him to PAWS. They are full of cats. They would put him to sleep. We don't want that. He is a sweet cat. Gary is depressed still, about, losing his licence. they are trying him on Rispridone and Prozac. Gary switched HD Phycholgists. They like this new one. I still, wish I am the only, one with HD. I deal with it positively. He gets deeper on the other side. I would give up my, life, to make him happy. Everyone feels this way, when your family has HD. You just have to try and live your life. Keep each other safe. Love one another. Support one another. Don't lose hope, there is a cure, that will save us all.

Placebo effect is in the spine as well as the mind

Placebo effect is in the spine as well as the mind

It's not all in the mind -- the so-called placebo effect is real and reaches right down to the spine, German scientists said on Thursday.

http://www.comcast.net/articles/news-science/20091015/SCIENCE-US-MEDICINE-PLACEBO/

This holiday season give the gifts that keep on giving...

This holiday season give the gifts that keep on giving...

http://www.hdsa.org/shop/94/241/holiday-store.html

Doggie Field Trip

I have been looking after Princess, everyday now. She and Lucky, love each other. She is a sweat dog. I love taking care of them. I am in doggie heaven, everyday now. Then we have little Jake visiting. On Sunday, we went, on a doggie field trip. We went for a hike and a drive. I have been getting sicker. Trevor, is worrying like crazy. I shake now, when eating. I have bad chorea. I am very confused. I get lost and confused, a lot now. My legs, hurt, when I stand, for long periods of time. I have been feeling a bit irrational. Trevor's week off was great. We took it slow, at home. He is getting back to normal. I accept, the fact that I am getting sicker. Accept, yourself. It will help you deal, better. It will give you, the strength to fight. Always, fight. Never lose, sight of the big picture. We are going to get cured. For, the first time there is hope.

HD Documentary

Our mission is to inform and bring a deeper understanding about HD. But first and foremost this film will be about the stories of the people it involves. These universal human themes will carry the film. They will compliment each other in a delicate and powerful way. Knowledge is power. This film aims to spread both Knowledge and build Power within the HD community and beyond. Through the stories in the film - we will bear witness to the questions, triumphs, struggles and daily life. By sharing stories, the film will spread Knowledge within the HD community as well as strengthen communication, encourage understanding, offer solace, honor the courage of all people affected by HD.

http://huntingtonsdiseasedocumentary.com/index.html

The Treatments that I am on

I had fun at Special. We used 3 toys. We used balls, hoops and the skipping rope. I can't wait for the ribbon, it s my favourite. I am getting a lot of anti oxidants.

They are 2 pieces of 70 percent chocolate bars,

We have Omega 3 from enforced granola and juice.

Wheat and oats are great. Any cereal that is wheat enforced

Green Tea and orange juice.

I also till use the Creatine. It has helped me gain 20lbs. I now weigh 120lbs. Enough that I can fight off any autoimmune disease and survive.

Hopefully, this works for you. It is working for me.

New Poem

I added a new poem, called Time Travel.

Inspire Hope today!

Inspire Hope today! Plant a flower in our Inspire Hope Amaryllis Garden

at http://www.inspirehope.ca/!

When you plant your flower, you can also leave a special message for others to see. As our Garden grows, each and every flower becomes a symbol of hope, courage and support for people affected by Huntington disease (HD). Every Amaryllis inspires hope!
Visit http://www.inspirehope.ca/ today!

Yours for a world free from HD!

More Updates

I updated my HD info page

So what are our next steps?

So what are our next steps? In January, we set a goal of having 50 co-sponsors by December 31, 2009. We're now extremely close to achieving that goal. But we need a little more push from

the HD community. Please take help to make this happen. Now is the time to take action!

Contact your Representative today and urge him/her to co-sponsor HR 678. It's quick, easy and completely hassle-free. Just click on this link and take action to make a difference.

And take a moment to call me if you have any questions or if you want to talk more about this effort. You can reach me

at 212-242-1968 extension 226

or via email at Jkogan@hdsa.org.

TRACK-HD reports baseline findings

TRACK-HD reports baseline findings

Me and my brother are part of this study.

We've been covering the findings that are emerging from the Predict HD study that follows volunteers from pre-manifest status through the progression of the disease. Europe and Canada have their own longitudinal study to document HD progression and discover and validate biomarkers to be used for improved, shorter clinical trials. TRACK-HD has been operating in the UK, Canada, France, and the Netherlands since January 2008 and has now published an analysis of the baseline results

The new study compares volunteer spouses and siblings who do not have the HD gene with pre-manifest gene carriers and people with early stage HD. The pre-manifest gene carriers were divided into two groups at the median estimated number of years to onset. The formula used to estimate years until onset was the Langbehn formula also used in the Predict-HD study. The early stage group was divided into two based on their scores on the total functional capacity scale.

The term pre-manifest has replaced pre-symptomatic to refer to those not yet diagnosed according to standard criteria. Predict HD and other studies have shown that psychiatric and cognitive changes occur before the disease can be diagnosed based on movement symptoms which is how onset has traditionally been defined.

Note to self: Stop ignoring your needs

If the stress in your life is more than you can cope with, get help right away.
We live busy, hectic lives. But to survive and thrive, we need to carve out those few minutes throughout the day for reflection and introspection.

A wise counselor once said, "Our culture and society program us for self neglect." In other words, we're rewarded for being workaholics and not for taking care of ourselves. That's not very good advice.

So how can we help each other feel good about taking time for ourselves?

Keep our momentum going!

Keep our momentum going!
Only 9 More to Go. Act Now!

Take Action!
We need you to contact your Congressional Rep Today!

Thank you for your ongoing efforts to help make HR 678, the Huntington's Disease Parity Act of 2009, a reality.

For those of you who have contacted your Congressional rep, THANK YOU! Your efforts have paid off! The last weeks have seen a 50% growth in co-sponsorships! We are now up to 41 co-sponsors, and need just nine more signatures to reach our goal of 50 co-sponsors!

Just last week, HDSA Advocate, Jill Loveridge emailed her Representative, Hank Johnson, and received confirmation that he would co-sponsor HR 678. As a social worker, Jill knows the power of individual advocacy, and how one person can make a difference! Jill understands the only way to make Congress care about Huntington's Disease is to mobilize the HD community.

Momentum is building, and now is the time to act

Click here

or visit http://capwiz.com/hdsa/ to email your representative today.

Remember, the more co-sponsors we have, the greater our chances of making HR 678 law. Thanks for your support!

The HDSA Advocacy team
advocacy@hdsa.org

In the Huddle This Saturday

Qualcomm takes you
In the Huddle
Saturday, October 17 from 6-10pm
at the Manchester Grand Hyatt

Presented by Palomar Pomerado Health

Don't miss this exclusive party featuring legendary football icons and amazing auction items such as:

* Super Bowl experience
* U.S. Open experience
* Las Vegas vacation
* Cabo San Lucas vacation
* signed jerseys from NFL stars Lance Alworth, Adrian Peterson,
Troy Polamalu, Peyton Manning, Drew Brees and others
* Chargers VIP experiences and signed memorabilia
* Designer handbags
* and more than 70 other great opportunities!!!

For more information and tickets, see our flyer below.


A night of football anecdotes and ad-libs to benefitthe Huntington's Disease Society of America
Presented by Palomar Pomerado Health

Head Coach Norv Turner, Quarterback Philip Rivers and Linebacker Shawne Merriman along with the voices of NFL football on ESPN - Mike Tirico, Ron Jaworski, Jon Gruden, Michele Tafoya and Suzy Kolber - will entertain and enlighten with stories, videos and audience interaction.

Coaching legend Don Coryell will be our honored guest on his 85th birthday.

Saturday, October 17, 20096:00 PM
at The Manchester Grand Hyatt


To purchase tickets, click here
For questions, contact Natalie Carpenter
619.225.2255 or click here

More Updates

I updated My Story.

Convergence of 3 Core Healthcare Reform Issues

Convergence of 3 Core Healthcare Reform Issues: American values, personal responsibility, and pragmatic solutions

http://trusted.md/blog/steve_beller_phd/2009/10/12/convergence_of_3_core_

healthcare_reform_issues_american_values_personal_responsibility_and_prag

Top 10 Ways to Boost Your Energy

Experts offer some fatigue-zapping tips that really work.
Everyone is familiar with all-out energy drain -- that exhausted day (or night) when no matter how enticing that new movie, fabulous shoe sale, or friendly barbecue, we just can't psych ourselves up to go.

http://women.webmd.com/features/10-energy-boosters

Emotional and Mental Vitalily

Emotional and mental vitality are closely tied to physical vitality-just as your mind has powerful effects on your body, so your physical state affects how you feel and think. Social contact can also make a big difference in how you feel.

http://www.webmd.com/healthy-aging/guide/healthy-aging-emotional-mental-vitality?ecd=wnl_hbn_101209

Amazing Bowling Games

I did amazing bowling the past 2 times at Special O. I got 4 spares. I got over 100 scores. I am doing way better, then I did last year. I think, my team this year can get 1st place again. Trevor is really burnt out. He works two jobs, 5 days a week. He has not had a week off, in 4 years. Besides Christmas. Whenever we go to visit my Dad, he does everything to relieve Trevor's stress. He got in the upper slot, at the mill. They gave him a week off this Thanksgiving. We are chilling at home, not doing much. He is a lot less distressed and enjoying, time away from work and looking after me. Trevor is getting worried again. I am having another HD bad 2 days. Every time I have a bad day, they get worse. My legs are still, getting uncomfortable and pain full. I am dancing a bit. I have a hard time standing, for a long time. It hurts my legs. Do not lose hope for a better life. That is what we all wish for. A better future. One full of hope. One with no remorse. Keep your head up. Don't look down. Our future is bright. Full of hope. We can see it. We can taste it.

Happy Thanksgiving

I hope everyone had a good thanksgiving. Trevor and I had a great Thanksgiving weekend. Alice was down, for the weekend. We made Thanksgiving dinner. Trevor and I cooked a dinner for Trevor's parents. We make everything from scratch, the old fashion way. Our meal was on Saturday. We went to Thanksgiving day service on Sunday. We also had another family dinner on Sunday. Alice and Trevor's Aunt, made dinner. The whole family, was at this one. We were spoiled. We got two Thanksgiving meals. Today we had breakfast with Terry and Alice. Today was animal day. We had our little Lucky, Princess Abby and Jake. Terry had to work late, so he dropped of Princess here. Then Jake came in. He waits at our door, whenever we take Lucky, out for his night walk. I hoped everyone had a good Thanksgiving weekend. Hope you had fun, with your family's. Stay together as a family. Be happy to be alive and here, people that love you.

Happy Thanksgiving

Hope

Hope, let it take us away. To better days. Remember, the love for life. Love your yourself. You are not HD. You are a person, with real feelings. Live like you are dying. Do not give up hope. Do not give up, dreams. Set goals, meet them. It will help you, through the dark times. We deserve to be happy. We deserve, to be loved. We deserve, the best. Make it happen, for yourself. Never give up. Never give in. Always fight. Don't give in one inch. Fight for your life. Your life is on the line. Don't let go. Fight for your life back. Fight for your happiness back. Fight for your hope back. Use your strenght. We all, have it. Be strong. Protect, your heart. Protect it, from pain. Pain, will never touch you. Fight for it.

Falling

I have been feeling weak lately. I have been falling a lot this week. I have a hard time getting out of the car and getting in. I hit my head a lot. Accepting HD. It is coming, it gets worse. It is how we make it, that changes everything. We know we are sick. We can handle it. Make it better. Ease over our hearts. Deep down inside, know that we are okay. We are all going to be cured. The generations will stop. Countdown for a cure, keeps ticking on.

Totally maxed out? Stop multitasking and start focusing

Insight often arises at the most surprising times. Last week was a very challenging one. Endless demands from emails and faxes, phone calls and just the daily hassles of modern life. On top of that I had been invited to a neighborhood gathering. I was not in the mood for socializing, but my wife and I felt a commitment to our neighbors so we went.
Need more help?

If the stress in your life is more than you can cope with, get help right away.
National Suicide Prevention Lifeline1-800-273-TALK (8255)
Go to the nearest hospital or emergency room
Call your physician, health provider or clergy
National Alliance on Mental Illnesswww.nami.org1-800-950-NAMI (6264)
A professional woman in her early 60s shared with me the challenges that she faced in business. She would come home exhausted at the end of every day. When she put a loaf of bread in the dryer, she said she knew she had to stop burning the candle at both ends.
And then she shared something that really struck me...

She said she learned to replace multitasking with being present in the moment. She emphasized the importance of being in the moment with others, connecting with them and being a good listener — not thinking ahead to what you want to say or interrupting with unsolicited advice.
Total engagement. Being present. Staying in the moment. These are hardly new concepts, but nonetheless vital ones for my family and me.
Have you experienced similar insights?

Complicated grief

Losing a loved one is one of the most distressing and, unfortunately, common experiences people face. Most people experiencing normal grief and bereavement endure a period of sorrow, numbness, and even guilt and anger, followed by a gradual fading of these feelings as they accept their loss and move forward.

http://www.mayoclinic.com/health/complicated-grief/DS01023

Bowling

Today, I went bowling. I did really good. We are making Thanksgiving dinner here again. I get to make dessert. Trevor and his Mom, do the rest. We do everything from scratch. I will make an amazing Berry Crumble. This will be a great Thanksgiving. I am so excited. I am over, that bad cold. I have been healthy, since Sunday. It was brutal. It also lasted two weeks. Glad it is gone. Breakthroughs happen everyday. Keep on it. Keep, your hope up. Everything, will work out fine. Keep faith. Believe.

From WEAREHD.ORG

I will be interviewed regarding my film on the Outdoor Channel's Motor Mania on 10/5. From one of my friends.

Cat Friend

Gary and I are waiting for the Creatine trial still. We are fed up with our Nero again. We are going to home for Christmas, we had an appointment at Dec 22. She sent us a letter, that moved it Jan 12. We have to go up there during Christmas to talk to her office. They never return or calls, and they know we live 6 hours away. We are stopping seeing her, and sticking to my Dr.Trew, my HD Psych. He is always available. We think, I am mostly mental and not pshycal. Trevor will watch me and see, when I need her.I had fun in Cranbrook, watching a movie, with Trevor. We have a stray cat friend, that comes in for visits. He loves Lucky, and Lucky loves him. He is a sweetie. He comes to visit a few hours everyday. We would take him in, but we are allowed one pet. His owners, kicked him out. Everyone of my neighbors, looks after Jake too. They feed him. Look after animals. They should always be wanted. Don't just throw them out, when it gets hard. They are babies, treat them like that. They have feelings. They feel pain.

CHARITY SPOTLIGHT

Charity Spotlight will be promoting a new charity regularly, by providing information about its mission, the disease that it represents and various resources affiliated with the disease and the organization. We will also be building a charity database that will provide our visitors with access and information. Prior to the launch of The Project - The Children's Rare Disease Network, we will be compiling information on as many rare disease charities as possible, this effort will be ongoing. We are currently asking charities to provide The Network with specific information about their organization to be included in our network. Please click here for more information and to download our document to submit for inclusion on The Network site or to forward the information to a rare disease charity you know.

http://www.theprojectcharity.org/footer/spotlight.php

STATE RESOURCES

STATE RESOURCES

Find resources in all 50 states for advocacy, recreation, assistive technology, education, health, and more!

Our partner, A-T Children's Project has compiled a list of resources, general information and guidelines that we hope you find useful. You will see this area of the site evolve as we are made aware of new resources and information relevant to you. If you have any questions, suggestions, additions or comments, please email info@theprojectcharity.org.

http://www.theprojectcharity.org/resources/stateresources.php

Vitamin D May Help Prevent Falls

Studies Show Taking Vitamin D Supplements May Cut Fall Risk After Age 65, if Dose Is High Enough

Taking vitamin D supplements, at a dose of 700-1,000 international units per day, may make falling 19% less likely for people aged 65 and older.

That news comes from a research review published online in BMJ, formerly called the British Medical Journal.

The review is based on eight studies of people aged 65 and older who took vitamin D supplements or placebos. Doses of vitamin D differed among the studies. Participants lived in nursing homes or in their own homes.

The reduction in fall risk was only seen in people who took at least 700 international units (IU) per day of vitamin D. Taking smaller doses didn't appear to help.

The reviewers -- who included Heike Bischoff-Ferrari, MD, MPH, director of the Centre on Aging and Mobility at Switzerland's University Hospital Zurich -- also noticed that the reduction in fall risk was only seen in people who achieved a vitamin D blood level of at least 60 nanomoles per liter.

Vitamin D affects muscle strength, and stronger muscles could mean less likelihood of falling, note Bischoff-Ferrari and colleagues.

The reviewers aren't ruling out the possibility that higher doses of vitamin D supplementation might be even more effective at preventing falls. But the studies they reviewed didn't include doses higher than 1,000 IU per day.

Taking too much vitamin D can cause nausea, constipation, confusion, abnormal heart rhythm, and kidney stones.

In the U.S., the Institute of Medicine (IOM) considers 200 IU of vitamin D to be an "adequate" daily intake for people up to 50 years old, an intake of 400 IU for people aged 51-70, and an intake of 600 IU for people aged 71 and older. The IOM also considers the tolerable upper limit for vitamin D intake to be 2,000 IU per day (1,000 IU per day in the first year of life).
However, many experts argue that the adequate daily intake for vitamin D should be higher. The IOM is reviewing its vitamin D recommendations and is expected to announce the results of that review next year.

HDSA Rockford mini-convention on October 17, 2009

For those of you in the greater Chicagoland area (Milwaukee to Munster) you are invited to the Illinios Chapter-HDSA Rockford mini-convention on October 17, 2009.

Please click on this link, http://www.hdsa- il.org/id34. html to register.

The mini-convention is free and will introduce tele-medicine to the attendees. We are hopeful that tele-medicine will be a way to reach out to those who cannot make the sometimes tedious drive to a Center of Excellence. We need your pre-registration in order to plan the food for the lunch.Peace and love.

Cognitive Changes

A great article on all of the HD changes. I am experiencing them all. The newest one, is lack of motavion.

http://www.huntingtonsociety.ca/english/uploads/Cognitive_Changes.pdf

Living Life to the Fullest

Living Life to theFullest: Families Share their Ideas This is a tons of ideas, that I ahve used or was taught, in Nursing school.

Living Life to theFullest: FamiliesShare their Ideashttp://www.huntingtonsociety.ca/english/uploads/Living_Life_to_the_Fullest.pdf

Youth Caregivers

CARING for a parent with Huntington's disease is worry enough, but knowing there is a 50 per cent chance they will end up in the same position with the same illness puts extra pressure on children and teenage carers. I was 14 when helped look after my Mom and raise my two brothers. I was 16, when I went to the hospital, to look after Mom.

http://thescVotsman.scotsman.com/features/-Too-much-too-young.5700559.jp

HD getting a bit worse

Tomorrow, We are going to watch a movie, in Cranbrook. I am having pain all over my body. It is an uncomfortable. It is a horrible feeling. I have a hard time typing. I am shaky all over and have a hard time walking. I also have problems, with standing for long periods. This is a little change. Not completely out of control. I still have the cold. I accept the fact that I am getting sick. Accept. We all have HD. We have symptoms. They are going to get worse. We know it. We need to know, that this is real. If you don't, then your life will never be happy.Accepting, leads to hope. Our lives end with hope. They beginning with hope. Accept your reality. Then you can move on, and live your life with joy.