Hope

I am still sick. It is more up for Trevor, becoming a Nurse. They want him bad. I am glad that he cares me so much, he wants to learn how to take care of me better. I manged to marry the perfect man for me. He is so caring. Hope is the word, that gives us life. It beathes for us. It grieve's for us. Hope is on our tongue. We can taste hope. We can see hope. It is always around. Never lose sight of it. Never lose it. Hope should, always be there. It will never leave, if you believe.

Sick again

I still have this brutal cold. I am still light headed and have no energy. My dementia is getting bad. I have brian fog. I try to explain something, and then I can't remember the word. Forgive your self. We aren't HD. We are not the diagnosis. We are people. We have feelings. Respect us. Love us. Remember, the person inside. Don't forget us. Forgive ourselves. It is not us, it is HD. Don't blame yourself. Forgive everything. No room for hate. Hate will get you no more. Let go of it. Hate is not good, to carry. Let it go.

Still Sick

This cold is getting worse. It had taken me out for 7 days now. I felt the symptoms of an ear infection. We went to Emerge. This cold tuns into ear infection, like symptoms. I fell twice, in the Hospital, a nice lady got me both times. My head is in pain, I have no strengh, no balance, lightheaded. Trevor has the same one, now too. I believe that it will get better. Alice, was down this weekend. I hope she does not get it. Make the worse, work for you. You can change it. You have the strengh, to change. Change your mindset. Fight to be healthy. Fight to be happy. Keep on fighting.

Team Hope Walk - Olympia WA

Awareness & Find a cure for HD

September 26, 2009
Please help build awareness & find a cure for HD;
Become involed in the up coming Event: Team Hope Walk - Olympia WA

yoy can support at: http://www.fristgiving.com/cynthiamailliard

Trevor's becoming a Nurse

My cold is going to last a week and a half. Everyone in Creston has it. It took out everyone. Even my Nurse's have it Trevor has too do 30hrs, work experience, before, he can do the Care Aide Course. He is going to do it at Swan Valley, where Alice and I worked. . I looked after Molly there. His Mom worked there 25 years. He would make a good Nurse. I looked after Molly there. His Mom worked there 25 years.

Every Amaryllis Inspires Hope

My family does this every year.

Each and every Amaryllis growing and blooming in homes and offices across Canada tells the stories of Canada’s Huntington’s community: stories of courage for those enduring HD, stories of excitement from our research community, stories of hope for those in the next generation and stories of impatience as we fight for a world free from Huntington’s.
Order your Amaryllis today!

Join our 2009 Amaryllis Campaign and help us raise critical funds for the fight against Huntington disease. Help us grow a brighter future – be part of our search for a cure!
Our Amaryllis volunteers sell bulb kits to raise vital funds for our programs in research, services and education. Each and every Amaryllis kit we sell takes us one step closer to a cure for HD. Each and every Amaryllis kit blooming in someone’s home or business holds the promise of a world free from HD.

Each kit contains one high-quality Orange Sovereign bulb, growing instructions, soil, pot and saucer, and are packaged in an attractive gift box. Bulbs can be planted immediately or stored in a cool, dry place for holiday gifts. Gorgeous orange-red blooms will appear approximately 6-8 weeks after planting.

Join our Amaryllis volunteers and help grow a brighter future. You can order cases of 12 kits to sell in your community – and we can help you every step of the way. Or, you can order a kit or two for your own enjoyment.

Thank you for helping us grow a brighter future and fight Huntington’s!
To order your amaryllis please visit www.huntingtonsociety.ca, call 1-800-998-7398, or email amaryllis@huntingtonsociety.ca

Niagara Falls International Marathon:

Niagara Falls International Marathon:

October 25th 2009

Niagara Chapter volunteer Judy Koczula is working hard to coordinate the Huntington Society of Canada’s participation in the Niagara Falls International Marathon, which will be taking place on October 26th, 2008! This world-class event draws participants from around the world, and the Huntington Society of Canada continues to be a prominent beneficiary of proceeds raised from this race. We’re encouraging participants who want to run, walk or wheel their way through the course to raise funds for the Society and our programs!

The Casino Niagara International Marathon is a qualifying event for the Boston Marathon, and the route takes participants through sites in both Canada and the United States – an interesting and challenging route! If you’d like more information about this event, or would like pledge forms, contact Judy Koczula at (905) 354-5744,

or to pledge participants please check out

www.huntingtonsociety.ca.

From WEAREHD.ORG

I am a psychology student in the Warsaw School of Social Sciences and Humanities in Poland. I am planning a study dealing with caregivers of people with Huntington’s Disease.
I would like to kindly ask for your aid in that research.

I need to gather a considerable amount of data. I collect the data using an on-line questionnaire which needs participation of persons responsible for giving care to Huntington’s Disease patients.
I would like to ask your help in spreading the source for this web survey among people that are responsible for the wellbeing of HD patients - either family members, friends or health careprofessionals.

The study deals with many problems that caregivers experience. The results may be the basis for designing a specific support program aimed at helping those people to better cope with their situation.

Can I hope for your help in that initiative? I would like to ask everyone of you who is actually responsible for giving care to a HD patient for participation in the study otherwise please spread the link to caregivers you know of. The survey takes approximately 25 minutes and every participant is invaluable. The more data we can collect the more precise the results will be.
Below you can find the link to the survey mentioned. Link to survey URL:

www.wroclaw.masternet.pl/_ankieta/index.php

I will readily answer any questions concerning the research project ( alicjadurawa@gmail.com ).
Also I would like to add that the research is not a commercial project. The study is part of my M. A. dissertation.

Options for Extra Care: Nursing Homes and Hospice Facilities

Options for Extra Care: Nursing Homes and Hospice Facilities
The services offered by nursing homes, assisted living facilities, or hospice are all very different. Find out more about each one and the costs associated with them.

Most people hope to live out their last years at home, but health circumstances may necessitate moves to nursing homes or assisted living facilities. When a loved one’s illness is terminal, hospice facilities or hospice care at home may be the most caring solution.
According to admissions director Janice Harris of Pickersgill Retirement Community in Towson, Md., each facility serves a different purpose and entails different costs.

Assisted Living Facilities

If your loved one is not incapacitated to the point that you need to consider the skilled care offered by a nursing home, assisted living can be a viable solution. Many are in pleasant, planned communities and can be a terrific option for people who are unable to maintain their own homes any longer or take care of daily needs such as cooking or driving; they may be experiencing decreased sensory perceptions and delayed reaction times or confusion, but don’t need round-the-clock nursing care.

The down side is the high cost. “Assisted living facilities can run from $1,000 to $5,000 per month or more,” says Bill Guerra, RN, BSN, with the Seven Hills Surgery Center in Henderson, Nev. Some assisted living facilities also charge extra for services like administering medications, providing trips to the physician, bathing, and so forth.

Medicaid will pay for assisted living for certain patients, depending on their income and personal resources.

Nursing Homes

Nursing homes provide care when patients can’t take attend to their basic needs, are incapacitated by illness, or have dementia, says Guerra. Some, like “memory centers,” cater to patients with dementia who are prone to wandering — leaving home and getting lost — or hurting themselves unintentionally, though they can usually walk and talk.

Nursing homes can be private-pay facilities or state-run homes covered through the Medicaid system for people who can’t afford the costs on their own. Qualifying for Medicaid is a complicated procedure, and it might be a good idea to consult with an elder law attorney. If you have time to plan ahead, you can take out a long-term care insurance policy to cover some or all costs, should a nursing home be necessary later in life. Medicare pays only for very limited stays under certain circumstances and not continual, long-term residence.

Hospice Facilities

Hospice facilities offer end-of-life care — care that is often administered in the patient’s home, though there are physical hospice facilities, too. Some hospice programs are independent, others might be within hospital settings. Tina Daniel, RN, a nurse manager with Gilchrist Hospice Care in Towson, Md., says that anyone can request an evaluation for hospice care: the patient, the doctor, friends, or family members. “At some facilities, a representative from the hospice or a nurse can determine if hospice is appropriate by visiting your loved one in their home, assisted living facility, or nursing home,” says Daniel.

“It does not matter whether you have personal insurance, Medicare, or Medicaid. If your loved one is terminally ill, you do not ever have to pay for hospice care services as there are non-profit hospice facilities that offer services for free,” says Guerra.

Gilchrist Hospice Care, where Daniel works, is an example of a non-profit facility and admits patients for hospice services regardless of their ability to pay. “Medicare covers 100 percent of services relating to terminal illness at home and at a long-term-care facility,” says Daniel. However, Medicare does not pay for room and board. The services covered are clinical support, equipment, and medication relating to the terminal illness. Insurance may assist with a portion of the cost of room and board. Daniel says, “We work with all insurances and discuss the benefits and co-pay with you.”

Your loved one’s medical team, the support staff at the hospital where treatment was given, and non-profit organizations are ways to get suggestions for local hospice facilities.

Finding Solutions

Your first step is deciding which facility is right for your loved one’s needs at this stage of his or her life. Then you’ll need to research costs, figure out what resources are available to pay for it, and whether your loved one qualifies for financial assistance or has any insurance. Investigate what your loved one may be entitled to from Medicare and Medicaid. Depending on the person's age and health status, there may be time to get long-term insurance for the future.
Once you know your budget, you can begin interviewing facilities about the level of care they offered and find the best one to meet your loved one’s needs.

Wills

Many people procrastinate when it comes to creating a will. Find out more about wills, when to
While most people are aware of the importance of a legal will, most of us do not have one and put off getting one written for a variety of reasons.

You may not want to think about the end of your life, but the reason for writing a legal will is to protect those you leave behind by outlining your wishes about the distribution of your personal possessions and assets.

What a Legal Will Covers

“Because a will is such an important legal document, it should be written with care and ensure compliance with your state’s laws,” says Phyllis J. Erlich, an estate and elder law attorney at the firm of Frank, Frank, and Scherr in Lutherville, Md.

A legal will expresses your wishes for the distribution of your assets and property and names those that you want to inherit your assets, such as pieces of furniture, jewelry, land, bank accounts, or stocks. A legal will also specifies who will be the legal guardian of your children, if they are minors, and who will be the executor of your estate and oversee the handling of your will.

Should You Write Your Own Legal Will?
“Generally speaking, if your estate is not at all complex, you have no real estate or valuable property and no minor children, you can probably write a will that will be accepted by the probate court, with the assistance of an online company, a book from the library, or special software for wills,” says Erlich. However, if your estate is complex, you own your own home, own stocks or other investments, and/or have children who are minors, it is probably best that you consult with an estate attorney who is familiar with your state’s laws.

How to Write a Will and What to Include

Here is a sampling of what’s included in a legal will:

Distribution of assets. “A will includes instructions on how to administer and disperse your estate upon your death,” says Erlich. It also names the person who will be the executor, or personal representative of your estate, if you chose one to oversee how your estate is handled.
Children. If you have minor children, your legal will also designates who will be their guardians(s). If you do not have a will when you pass away, the state will decide who becomes the guardian of your children, and what happens to your property, personal possessions, and investments.

Probate. Wills usually go through what is called probate court, which can be quite slow and expensive. If your estate is very large (worth more than $1 million), then you should probably consult an estate attorney to help minimize the financial impact on your beneficiaries, who may be subject to huge taxes and probate fees (probate courts alone charge 3 to 7 percent of the amount of the total estate). “By planning ahead, you can save your loved ones a lot of heartache and expense,” Erlich says.

Investments and retirement assets. If you have investments, retirement accounts, and bank accounts, you may want to consider avoiding probate court by filling out forms called TOD (transfer on death) and POD (pay on death), Erlich says: “The TOD is applicable to stocks, investment, and retirement accounts. You can get the TOD form from whomever you invest with and designate whom you would like to inherit a particular account. For bank accounts, the form is the POD, and again, you can get the form from your bank and designate who you would like to inherit your account. With these two forms you can avoid probate.”

A Living Will: Your Voice When You Can’t Speak

When it comes to your desires for medical care, another legal document is needed. “This document specifically describes what you want if you are no longer able to decide for yourself. It is often called an Advance Directive and includes a health care power of attorney and a living will,” says Erlich.

It is advisable to have an Advance Directive in place at any age, because you never know when an accident or illness could strike. Because this document states your intentions, your loved ones won’t be put in the position of trying to speak for you or guess your wishes when it comes to issues like resuscitation and being put on life support. The Advance Directive is a legal document that, should you become incapacitated, allows you to specify the kind of medical treatment you want or don’t want, names a person you designate to make your health care decisions for you, and specifies your end-of-life wishes.

How to Write a Will Online

There are numerous do-it-yourself kits you can purchase as software, and you can also educate yourself about and prepare your own will with the help of several Internet sites, including:

Be aware that Web sites offering assistance with writing a will include disclaimers noting that their services are not equivalent to legal counsel from an attorney.

Decide today that you are going to start the process of preparing a legal will, and give yourself a reasonable deadline, like a few months, to have the process concluded. You will save your heirs a lot of headaches by taking steps to express your wishes legally with regard to your assets as well as your health care, should you become unable to verbalize those decisions yourself.

Nasty Cold

I have a really nasty cold. It took Trevor out for two days, me the same. It is one of the worst colds, I have ever have. I have had lots. It took out all of the workers at the mill, where Trevor works. I did get to bowl before I got sick. I came in second place. My score was 91. We need life. Life needs us. Don't give into darkness. We can' t out of there. We need to be bright. To be on. Find that sunshine. Fight for the light. Fight to stay in the light. Let the light guide you. Follow it. It will show you away, without pain. Follow with open eyes and arms.

Prenatal testing options

Prenatal testing options

Pregnancy is an exciting time, but it can also be challenging and full of decisions. Each clinic visit seems to hold new options, including options to learn about your baby's genetic health before he or she is born.

Some individuals decline all genetic screening and prenatal testing; this is a perfectly acceptable choice. Others choose a form of genetic screening to determine the chance that their baby might have a chromosome abnormality, like Down syndrome.

This can be done by either a first trimester screen or quad marker screen. The main difference between the two is when they take place. A first trimester screen will give you this information between weeks 11 and 14 of pregnancy; a quad marker screen usually doesn't take place until week 16.

A second-trimester ultrasound is also considered a prenatal screening test. Although it won't tell you details about the baby's genetic makeup, it will provide an assessment of the baby's anatomy to see if any birth defects exist. Since certain birth defects can be associated with genetic conditions, it may indirectly give you information about the chance that your baby has a genetic condition.

One of the main benefits of prenatal screening is that you can learn the chance that your baby has genetic condition without putting the pregnancy at risk; this is different than diagnostic testing. Diagnostic testing will give you a definitive answer about the baby's number and overall structure of chromosomal material, but carries with it a small risk for miscarriage.
Two options for diagnostic prenatal testing include amniocentesis and chorionic villus sampling (CVS). Amniocentesis is generally done after 14 weeks of pregnancy; CVS is done between weeks 10 and 12 of pregnancy. CVS is a slightly more invasive test, but provides the information at an earlier gestational age. However, it does carry a slightly higher risk for miscarriage than amniocentesis.

Meeting with a genetic counselor can be exceptionally helpful in making a decision about the best options to pursue, if any, during your pregnancy. One of the most important questions to ask yourself during this time is "What will you do with the information you learn?" Please, share your experiences and feedback for our readership.

Watch for warning signs of suicide

Watch for warning signs of suicide

What can you do to prevent suicide?
Talk to someone, ask for help.
Need more help?

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)
Don't feel that merely talking about suicide causes suicidal thinking. That's not the case.
Know the warning signs of suicide. We encourage people to pay attention to signs that might indicate someone is considering or planning to end their life. These signs include:
Statements about hopelessness, helplessness or worthlessness.

Sudden change from a depressed mood to a happier, calmer mood.

Direct or indirect statements that reference death or dying.

Giving away cherished possessions.

Isolating oneself from friends or family.

Making arrangements or setting one's affairs in order.

If someone is in immediate crisis, call 911 or the National Suicide Prevention Lifeline at 1-800-273-TALK (800-273-8255). Don't hesitate to make such a call if you suspect that someone may be a danger to him or herself. It could save that person's life.

Let's make it 50! When HDSA Advocates Act, Congress Responds! Take Action!

Let's make it 50! When HDSA Advocates Act, Congress Responds! Take Action!We have some exciting news! In the last two weeks, five more Congress Members have cosponsored HR 678! How? Families affected by HD wrote, called and met with their Representatives to ask for their support. As a result, we’ve seen our cosponsors grow from 25 to 31 (a 25% increase)! And the more cosponsors we have, the greater our chances of making HR 678 law.Maria O’Connor of Indiana helped secure the support of Congressman Brad Ellsworth. Joined by Eric Waycott and HDSA social worker Leo Rafail, the group met with Rep. Ellsworth and shared their personal stories about HD. Before the meeting even ended, Rep. Ellsworth agreed to become cosponsor #30!“It started with an email ,” Maria said. “A few weeks later, we met with the Congressman in his local office. It was so easy” she said. “We didn’t even need to convince him to become a cosponsor of HR 678. He just said, ‘it’s the right thing to do.’

”You can do the same! Click here or visit

http://capwiz.com/hdsa/

to email your representative today and help educate DC about HD! It’s fast, easy and can help us reach our goal of 50 cosponsors by the end of 2009. We’re also happy to help you set up a meeting like Maria, Leo and Eric. Just email us at

t get more involved. Thanks for your support!The HDSA Advocacy teamc advocacy

advocacy@hdsa.org

Still sick

Got a cold, can't blog today.

Clinical trials Information

Fetal Tissue Research

A relatively new field in biomedical research involves the use of brain tissue grafts to study, and potentially treat, neurodegenerative disorders. In this technique, tissue that has degenerated is replaced with implants of fresh, fetal tissue, taken at the very early stages of development. Investigators are interested in applying brain tissue implants to HD research. Extensive animal studies will be required to learn if this technique could be of value in patients with HD.

Clinical Studies

Scientists are pursuing clinical studies that may one day lead to the development of new drugs or other treatments to halt the disease's progression. Examples of NINDS-supported investigations, using both asymptomatic and symptomatic individuals, include:

Genetic studies on age of onset, inheritance patterns, and markers found within families. These studies may shed additional light on how HD is passed from generation to generation.

Studies of cognition, intelligence, and movement. Studies of abnormal eye movements, both horizontal and vertical, and tests of patients' skills in a number of learning, memory, neuropsychological, and motor tasks may serve to identify when the various symptoms of HD appear and to characterize their range and severity.

Clinical trials of drugs. Testing of various drugs may lead to new treatments and at the same time improve our understanding of the disease process in HD. Classes of drugs being tested include those that control symptoms, slow the rate of progression of HD, and block effects of excitotoxins, and those that might correct or replace other metabolic defects contributing to the development and progression of HD.

How Does Dimebon Fight Alzheimer's & Huntington's ?

Dimebon is one of the more promising medications in clinical trials. It has been shown to inhibit brain cell death in preclinical models relevant to Alzheimer's disease and Huntington's disease. New data shows how it may work by relieving oxidative stress. ( Currently, the most popular ways being explored to fight Alzheimer's are the reduction of beta-amyloid, tau and oxidative stress. )

An investigator and physicians said that Medivation's Dimebon may have some effect on the oxidative stress pathway. Dimebon is an orally-available small molecule that is a potential treatment for Alzheimer's, Huntington's and other neurodegenerative disorders.

There is data that indicates that the brain in Alzheimer's Disease (AD) is under increased oxidative stress, which may have a role in the pathogenesis of neuron degeneration and death in this disorder. There have also been studies that indicate that free radicals are possibly involved in the pathogenesis of neuron death in AD.

Any given cell has hundreds of mitochondria. This illustration shows two—a healthy mitochondrion and an oxidatively stressed and damaged one. The arrows indicate the movement of free radicals, which can spread easily from damaged mitochondria to other parts of the cell.

Free radicals are oxygen or nitrogen molecules that combine easily with other molecules (scientists call them “highly reactive”). Free radicals are generated in mitochondria, which are structures found in all cells, including neurons.

Mitochondria are the cell’s power plant, providing the energy a cell needs to maintain its structure, divide, and carry out its functions. Energy for the cell is produced in an efficient metabolic process. In this process, free radicals are produced. Free radicals can help cells in certain ways, such as fighting infection. However, because they are very active and combine easily with other molecules, free radicals also can damage the neuron’s cell membrane or its DNA. The production of free radicals can set off a chain reaction, releasing even more free radicals that can further damage neurons (see illustration "Mitochondria and Free Radicals"). This kind of damage is called oxidative damage. The brain’s unique characteristics, including its high rate of metabolism and its long-lived cells, may make it especially vulnerable to oxidative damage over the lifespan. The discovery that beta-amyloid generates free radicals in some Alzheimer's disease (AD) plaques is a potentially significant finding in the quest for better understanding of AD as well as for other neurodegenerative disorders and unhealthy brain aging.
Dr. Mark Smith, an investigator on Dimebon's trials who has studied the oxidative stress hypothesis for more than 15 years at Case Western Reserve University, said the clinical data on Dimebon looks very promising, especially if it is hitting mitochondria. "Obviously targeting mitochondria makes sense therapeutically, if you want to target the oxidative stress pathway." Oxidative modifications are a hallmark of oxidative imbalance in the brains of individuals with AD, according to one paper by Smith.

Dr. Eric Reiman, executive director of the Banner Alzheimer's Institute, said most of the mitochondrial pores and election transport chains are downregulated in regions of the AD brain. "That begs the question of whether the disease is a cause or consequence of dying neurons," he said.

"If I had to guess, I think something is going wrong in a patient's nerve endings in the brain," Reiman said. He added that Medivation's Russian study looks promising, but the US study will ultimately determine whether there will be a benefit.

A number of other studies are drawing more attention to metabolism and the effects on mitochondria, noted Reiman. Nerve terminals may play a role in early pathogenesis and presymptomatic disease - but oxidative changes also occur as a result of the normal aging process, and are not specific to AD, he cautioned.

Medivation's Dimebon is currently being tested as a symptomatic agent, and not a disease modifying therapy.

Smith is also a scientific advisor to Anavex Life Sciences, a company focused on Alzheimer's Disease (AD) drugs targeting oxidative stress, a similar mechanism of action to Medivation's Dimebon. He described Anavex's pre-clinical data as exciting, but noted that its drugs are obviously not as advanced in the pipeline.

Anavex are focused on sigma receptors, which have been shown to be neuroprotective, Smith said. Activation of sigma receptors have lead to alterations in memory in transgenic mice, and the downregulation of sigma receptors occurs at very early stage of the disease, he noted. None of the trials that targeted amyloid have worked so far, Smith noted. "I've written a lot of papers that both tau and amyloid are responses to the disease," he said, noting that the tau hypothesis is another place to look, but it does not mean everyone in the field should move into tau.

The compounds by Medivation and Anavex both lower oxidative stress levels, Smith noted. The APOE isoform is definitely a risk factor; there is a change in metabolism early on in Alzheimer's disease (AD) patients - which implicates mitochondrial dysfunction and oxidative stress. If oxidative stress is targeted in the right way, there will be a significant change in the progression of the disease, Smith added. Dr Gregory Jicha, a neurologist at the Sanders-Brown Center on Aging at the University of Kentucky, noted that IGF is also a compelling target, and there is a lot of preclinical clinical data in the AD population. "We actually submitted a grant that was shot down, because IGF was tested already in AD," he said.

"The caloric restriction data is extremely strong, but there is no agent necessarily associated with it," Jicha said. Hypoglycaemic agents, such as metformin, and PPARS are also in trials in AD, but while they may improve memory, there is a lot of potential risk.

Dimebon's preclinical data still has some flaws, Jicha noted. Animal models using the agent showed cholinergic deficits. If the drug indeed works through mitochondria, Jicha questioned why it doesn't show through a more generic cell death model.

Jeffrey M. Ostrove, Ph.D, president & CEO of Ceregene, said a deficiency of nerve growth factor, or other trophic factors, is among an alternative hypothesis for AD pathogenesis. Several lines of evidence support, but do not yet prove, this hypothesis, he said.

Numerous groups are attempting treatments to boost the levels of trophic factors for therapeutic purposes, and one of the most advanced trials involves the use of neurotrofin, an agent that is said to promote the release of trophic factors and cytokines. "We're looking at symptomatic improvement, because we don't know what is causing AD," he said.

Medivation is developing Dimebon as monotherapy, since the company can actually use the Russian trial data by doing that, Smith noted.

Feel

I get to go to Special O tomorrow. I get to bowl. I hope I do good. Today I have been healthy. No more pain.Our future is open. Our lives are open. Our hearts are full of hope. Our hearts are full of good feeling. Feel alive. Feel your blood flowing. Don't let HD taint you. Stay free of it. Fulfill, your hopes and dreams. Make goals. Set up a life worth living. No HD. What will you do when you are cured? Until that happens, live your life. Live everyday, like they are the last. Savour every minute. It is your life. Make it matter. Life has to be worth living. Live it. Love it. Don't let HD take your hope away. Fight for it. We are fighting for our life. Our life is on the line. Don't let it take you away. Fight to be happy. Fight for hope. Never give up. Never give up believing. Believe in hope. Believe in cures. Believe in dreams. Dreams are life. Life is worth fighting for. Hope is worth fighting for, too.

Trey Gray Post from a another forum

If you were up early today (8AM Chicago time) Private Sessions on A&E cable did their show on Brooks &Dunn...Trey Gray got a lot of camera and looked great! Having met him at the Rinkle Family's Hot Cakes for HD this past summer, I remain amazed at how strong a person he is for fighting the demon that haunts all of our families. Susie and I wonder what will happen to him as the band breaks up for good next August. I'm sure he will continue his advocating for HD and hopefully we'll see more of him at many of our events for years to come.

NeuroSearch announces the advance of NsGene’s Neublastin into Phase I clinical development as a novel treatment for neuropathic pain

NeuroSearch announces the advance of NsGene’s Neublastin into Phase I clinical development as a novel treatment for neuropathic pain

Copenhagen, 3 September 2009 – NeuroSearch A/S (NEUR) today announced that the associated company, NsGene A/S (25% owned), has advanced Neublastin into Phase I clinical development for the treatment of neuropathic pain. Neublastin is a novel, proprietary and potentially disease-modifying therapeutic protein, which NsGene has out-licensed to Biogen Idec (NASDAQ; BIIB) in the field of peripheral nervous system disorders. NsGene has retained all global rights to central nervous system indications.

The first patient has been dosed in the Phase I study at the University of Adelaide in Australia with a total of 28 patients with neuropathic pain expected to be enrolled to evaluate the safety and tolerability of Neublastin. Biogen Idec will conduct and sponsor the Phase I study, the initiation of which also triggers a milestone payment to NsGene from Biogen Idec.

Flemming Pedersen, CEO of NeuroSearch, commented:

”Neublastin is a novel biological drug candidate, which has the potential to offer curative treatment of serious pain conditions as well as other diseases caused by nerve damage, including spinal cord injuries. Such conditions are only very poorly treated today, and we believe Neublastin may represent a paradigm shift in the treatment of a number of diseases in the central and peripheral nervous system. NsGene has a very exciting portfolio of biological neurology products and we are very satisfied with the successful progress in NsGene and our share holding in the company which we see as a long-term strategic investment in biological drugs.”

In an announcement from NsGene today, Teit E. Johansen, CEO of NsGene, said:
“The initiation of this Phase I trial is a significant milestone for NsGene, since Neublastin is the first programme from our unique pipeline of proprietary neurotrophic factors to make the important transition into clinical development.”

Gilmore O’Neill, Senior Director, Experimental Neurology, Biogen Idec, said:
“Biogen Idec is dedicated to developing pioneering treatments for patients with neurological diseases and Neublastin represents a potentially first-in-class therapy

Recruitment completed in Phase III study with ACR16 in Huntington’s disease

NeuroSearch successfully completes patient recruitment in MermaiHD, a pivotal Phase III study of ACR16 in Huntington’s disease – and updates on other pipeline news

NeuroSearch has successfully completed the recruitment of patients in MermaiHD, the European Phase III study of ACR16, a dopaminergic stabiliser and the company’s novel drug candidate for the treatment of Huntington’s disease. The recruitment is completed less than a year after the first Huntington’s patient was screened for the study, which, with 420 patients planned for enrolment, is the biggest Huntington’s disease trial that has ever been performed in Europe.

MermaiHD is a multi-centre, randomised, double-blinded and placebo-controlled study to evaluate the efficacy and safety of ACR16 as a novel treatment for Huntington’s disease. In the study, Huntington’s patients are randomised to receive either 45 mg ACR16 once daily, 45 mg ACR16 twice daily or placebo over 26 weeks of treatment. The study is performed at centres in eight European countries including Austria, Belgium, France, Germany, Italy, Portugal, Spain and the United Kingdom.

To date, 80 patients who have completed the 26 weeks of randomised treatment in MermaiHD have elected to continue in the six month, open-label extension to the study, and the first patients are approaching one year treatment with ACR16. So far, the safety profile of ACR16 has been very satisfactory.

MermaiHD is performed in collaboration with the European Huntington’s Disease Network (EHDN), an association of investigators dedicated to improving the care of patients with Huntington’s disease through clinical research. Their efforts to help identify eligible patients and support participating clinics have played a significant role in the timely recruitment for the study.

MermaiHD is a Phase III study and part of NeuroSearch’s pivotal development programme for ACR16, which also comprises HART, a Phase IIb study, being conducted in North America. HART was initiated in October 2008 and patient recruitment is expected to complete later in 2009.

Dieter Meier, MD, CMO of NeuroSearch, comments:

“We would like to thank the patients and caregivers, who, by their participation, are making this study possible. Thanks should also go to the Huntington’s Disease associations of the participating countries, who have helped in creating awareness of the study among patients. Together we have succeeded in recruiting more than 400 patients with Huntington’s disease in less than a year. This is in absolute accordance with our plans, and the completion of patient recruitment in MermaiHD, the largest study ever conducted with a novel drug in Huntington’s disease in Europe, is a very important milestone for us.”

Flemming Pedersen, CEO of NeuroSearch, adds;

“We are excited about the prospects of launching ACR16 in 2011 as a novel and better treatment for Huntington’s disease. In this area, the need for better drugs is huge, and bringing ACR16 to the market to help improve lives for both patients and their relatives will mark a tremendous change for our company.”

NeuroSearch demonstrates the potential of ACR16 as a novel treatment for Huntington’s disease

NeuroSearch demonstrates the potential of ACR16 as a novel treatment for Huntington’s disease

Preclinical and early clinical data presented at the 4th Huntington’s Disease Therapeutics Conference in Cannes, France

Today, NeuroSearch presents data on the mode of action and the preclinical pharmacology of ACR16, demonstrating the unique functional activity of the company’s novel drug candidate in

development for Huntington’s disease.

Furthermore, preclinical and clinical results also presented today, demonstrate the potential of ACR16 as an effective and novel treatment for Huntington’s disease symptoms, for which no effective treatment exists currently. In particular, patients with Huntington’s disease experience reduced motor performance, cognitive impairment and depressed mood, and ACR16 may be effective in targeting both the motor and behavioural symptoms of the disease. A pivotal development programme is underway, with the results from a large European Phase III Huntington’s disease study expected around the turn of the year.
The preclinical and early clinical data on ACR16 will be shown today, Wednesday 29 April 2009 at 2:30 pm CET at the 4th Huntington’s Disease Therapeutics Conference held in Cannes, France in the form of two poster presentations. Details of the posters and the main findings follow:

“Preclinical pharmacology and mode of action of the dopaminergic stabilizer ACR16”,By S Waters, F Petterson, T Dyhring, C Sonesson, J Tedroff, N Waters, H Pontén
In vitro binding studies show that ACR16 binds to the dopamine D2 receptor, with a slight preference towards the high affinity (activated) receptor state.

ACR16 differs from dopamine D2 receptor antagonists, agonists and partial agonists:
Unlike classical D2 antagonists, ACR16 antagonises dopamine-dependent D2 activation with fast-off kinetics. Unlike agonists and partial agonists, it has no detectable agonist activity at the D2 receptor. These in vitro findings suggest that ACR16 would be able to allow the physiological effects of dopamine surges.

In vivo, ACR16 strengthens glutamate function in the frontal cortex. This phenomenon, which is not observed with classical D2 antagonists or partial agonists, may add to the novel agent’s powerful in vivo behavioural effects in states of excessively high dopamine activity or excessively low glutamate activity, while not affecting behaviour under normal conditions.
Together, these findings suggest that ACR16 stabilizes psychomotor activity in states of hypo- and hyperactivity, by means of functional D2 antagonism and strengthening of cortical glutamate functions; offering the potential for clinical relief of psychomotor symptoms arising from dopaminergic dysfunction in conditions such as Huntington’s disease.

“Rationale for ACR16 as a symptomatic treatment for Huntington’s disease”,By M Esmaeilzadeh MD, J Tedroff MD, PhD

ACR16 represents a novel class of functional modulators of the dopaminergic system (i.e. dopaminergic stabilizers), which primarily interact with D2-type receptors.Unlike other compounds acting on D2 receptors (e.g. neuroleptics and partial dopamine agonists), the effect of ACR16 extend beyond the dopaminergic system, leading to strengthened cortical control of the striatum.

Early clinical studies with ACR16 have been encouraging in terms of reducing Huntington’s disease symptoms, without producing unwanted side effects.
Joakim Tedroff M.D., Ph.D, Medical Director of NeuroSearch Sweden AB comments:
“Huntington’s disease is a very serious condition associated with a complex mixture of motor dysfunction, cognitive decline, and behavioural difficulties. So far, no treatment has been able to effectively help improve life for Huntington patients, and therefore we are encouraged by these results from early clinical studies with ACR16, which suggest that it has the potential to provide relief for a number of the symptoms associated with this devastating brain disorder. We are currently evaluating ACR16 in a comprehensive pivotal programme, including a total of 640 patients with Huntington’s disease in both North America and Europe, and the first results are expected around the turn of the year.”

NeuroSearch achieves approval for HuntexilTM as brand name for pridopidine

NeuroSearch achieves approval for HuntexilTM as brand name for pridopidine-

Copenhagen, 24 August 2009 – NeuroSearch (NEUR) announces today that the European Medicines Agency (EMEA) has approved HuntexilTM as the new trade name for pridopidine (previously designated ACR16), an entirely new medical approach for the treatment of Huntington’s disease.

Planned for market launch in 2011, HuntexilTM (pridopidine) is in late stage clinical development as a novel treatment for Huntington’s disease. NeuroSearch is committed to developing new and effective therapies for speciality disease areas of significantly unmet medical needs, and developed Huntexil™ to address the limited treatment options currently available for Huntington’s patients and their treating physicians. To date, clinical studies have shown HuntexilTM to have promising effect on a number of the serious symptoms associated with Huntington’s disease. This includes, in particular, a significant improvement in patients’ ability to perform voluntary movements and the ability to walk with fewer incidents of falls, leading to a better daily functioning and quality of life.

“At NeuroSearch, we are highly committed to our HuntexilTM programme aiming for registration and marketing of the product in 2011 as one of the first specific treatments for patients with Huntington’s disease. The estimated total number of Huntington’s patients worldwide is approximately 100,000, and no effective treatment is currently available for this severe disease. HuntexilTM is one of the only new Huntington’s drugs in late-stage development,” commented Flemming Pedersen, CEO of NeuroSearch.

Joakim Tedroff, Chief Medical Officer of NeuroSearch Sweden, added:
“We are very excited about the prospects for our product. Huntington’s disease is a devastating neurodegenerative disease causing progressive loss of previously acquired functions. The results NeuroSearch have generated with HuntexilTM so far indicate that this drug represents a unique therapeutic principle with the potential to ameliorate some of the most disabling symptoms of the disease. It is our hope that Huntexil™ will help patients regain abilities lost by the disease, making their everyday life easier.”

The pivotal development programme for HuntexilTM comprises two ongoing clinical studies; a six-month European Phase III study, MermaiHD, and a three-month North American study, HART. Both studies are randomised, double-blind and placebo-controlled evaluating the efficacy, safety and tolerability of two different HuntexilTM dosing regimens. NeuroSearch has finished recruiting patients to MermaiHD which, with more than 430 patients enrolled, is the largest European Huntington’s disease study to date. The HART study is still recruiting.

Both studies are progressing well, and HuntexilTM appears to be well-tolerated. To date, approximately 90% of the patients who have completed randomised treatment in MermaiHD have chosen to continue treatment with HuntexilTM in a six month, open-label extension study.

Huntexil™ has been registered as a new trademark in Denmark and NeuroSearch is now seeking registration of HuntexilTM in other relevant jurisdictions, including the European Union and North America.

NeuroSearch presents at the 11th Rodman & Renshaw Annual Healthcare Conference in New York

NeuroSearch presents at the 11th Rodman & Renshaw Annual Healthcare Conference in New York

Copenhagen, 31 August 2009 – NeuroSearch (NEUR)
will make a presentation at the 11th
Rodman & Renshaw Annual Healthcare Conference
to be held on 9–11 September
at the New York Palace Hotel, New York
NeuroSearch’s presentation is scheduled for: Friday, 11 September

at 11:40 am to 12:05 pm local time and will be held by CEO Flemming Pedersen.
In his presentation, Flemming Pedersen will give an update on NeuroSearch’s broad clinical pipeline with focus on HuntexilTM (pridopidine), a Phase III orphan drug for the treatment of Huntington’s disease, and tesofensine, a novel anti-obesity product ready for Phase III development as well as on the company’s new CNS focused drug discovery and development alliances with Eli Lilly and Janssen. The presentation will be webcasted and the link to access the audio webcast will be available at www.neurosearch.com

together with the powerpoint presentation just before the presentation will be held at the conference. Contact person: Hanne Leth Hillman, Vice President, Director of Investor & Capital Market Relations, telephone: +45 4017 5103 About NeuroSearch

NeuroSearch (NEUR) is a Scandinavian biopharmaceutical company listed on NASDAQ OMX Copenhagen. The core business of the company covers the development of novel pharmaceutical agents, based on a broad and well-established drug discovery platform focusing on ion channels and central nervous system (CNS) disorders. A substantial share of the activities is partner financed through strategic alliances with Janssen Pharmaceutica, Eli Lilly and Company and GlaxoSmithKline (GSK), and license collaboration with Abbott. The drug pipeline comprises seven clinical (Phase I-III) development programmes: Pridopidine (ACR16) for Huntington’s disease (Phase III), tesofensine for obesity (Phase III ready), ABT-894 for ADHD (Phase II) in partnership with Abbott, ACR343 for schizophrenia (Phase II ready), ACR325 to treat dyskinesias in Parkinson’s disease (Phase Ib), ABT-560 for the treatment of cognitive dysfunctions (Phase I) in collaboration with Abbott, NSD-788 for anxiety (Phase I) and NSD-721 for social anxiety disorder (Phase I). In addition, NeuroSearch has a broad

Articles from the World Congress on Huntington's disease (WCHD) in Vancouver

This is all of the info on WCHD conference.

http://www.neurosearch.com/Default.aspx?ID=16

HART - research sites are actively recruiting research participants

HART - research sites are actively recruiting research participants

A Multi-Center, North American, Randomized, Double-Blind, Parallel Group Study Comparing Three Doses of ACR16 Versus Placebo for the Symptomatic Treatment of Huntington Disease
The Huntington Study Group (HSG) is conducting a study of the research medication ACR16 in persons 30 years of age and older who have clinical features of Huntington Disease (HD). HART is designed to determine the general safety and tolerability and an effective dose of ACR16 as well as the effect of ACR16 on motor (movement) and cognitive (thinking) abilities in subjects with HD. Approximately 35 research centers in North America will enroll up to 220 subjects for 16 weeks each. Enrollment began in October 2008. This study is sponsored by NeuroSearch Sweden AB.

Please see the HART Participating Site List. New sites will be added to this list as they secure the approval required to enroll study participants.

Related Documents:HART Participating Site ListHART Press Release (December 2008)

Related Links:Clinical Trials.govHART HDTrials.org Study Listing Information (June 2009)

HART News Article by Dr. Marsha Miller (February 2009)HART News Article by Dr. LaVonne

Veatch Goodman (February 2009)

ACR16 at World Congress on Huntington's disease (WCHD) in Vancouver

This is huge. Countdown for the cure. It can only go up from here.

Copenhagen, DENMARK September 15, 2009 NeuroSearch (NEUR) reported today that its lead specialist product HuntexilTM (pridopidine) is the subject of several key poster presentations at this year's World Congress on Huntington's disease (WCHD) in Vancouver. Planned for market launch in 2011, HuntexilTM is in late stage clinical development as a novel therapeutic for the treatment of Huntington's disease.

NeuroSearch's presence at the HD congress is substantial and the focus is to share the most recent update and present supportive data on the company's two ongoing, large clinical development studies for HuntexilTM: MermaiHD in Europe and HART in North America[i].

Both studies are designed to investigate the potential of HuntexilTM as a symptomatic

treatment of the voluntary movement ability in patients with HD. The studies are randomised, double-blinded and placebo-controlled evaluating the efficacy, safety and tolerability of different HuntexilTM dosing regimens. Results from MermaiHD are expected in the beginning of 2010, whilst HART results are anticipated later in 2010. The information on the key clinical studies for Huntexil™ in HD is supported by two other poster presentations:

- "Pharmacology of the dopaminergic stabilizer pridopidine" reports findings from a number of pharmacological studies suggesting that pridopidine stabilizes psychomotor activity and may therefore offer clinical relief of psychomotor symptoms arising from dopaminergic dysfunction in conditions such as a

HD[ii]. - In "Validation of the modified motor score (mMS): a modified version of the Unified Huntington's Disease Rating Scale (UHDRS) motor score"[iii] the primary endpoint used in the MermaiHD and HART studies was presented. The mMS measures the patients' ability to perform voluntary motor tasks. Furthermore, the design of Europe's first large scale comprehensive study measuring the socioeconomic burden of Huntington's disease (Euro-HDB) was revealed[iv]. The primary objective of the Euro-HDB study is to assess the cost of HD across six European countries: France, Germany, Italy, Spain, Sweden and the UK. The study aims to recruit 1,000 patients, to collect information on clinical characteristics, health-related quality of life (HR-QoL) and healthcare resource utilisation. The main aim of the study is to demonstrate the true cost of the illness and to identify any relationships between clinical status, patient management and patient outcomes.

Dieter H. Meier, Executive Vice President and Chief Medical Officer of NeuroSearch commented: "NeuroSearch's substantial presence at this year's WCHD has been very well received and reconfirms the company's ongoing commitment to delivering both patients and the professional community a clinically robust novel therapy for Huntington's disease."

NeuroSearch is dedicated to developing new and effective therapies for areas of significantly unmet medical need, and develops Huntexil™ to address the limited treatment options currently available for Huntington's patients and their treating physicians.

Links to the presentations can be found under "Event calendar" in the IR section of NeuroSearch's homepage www.neurosearch.com.

Pridopidine (HuntexilTM) - A dopaminergic stabiliser

Pridopidine belongs to a novel class of active agents called dopaminergic stabilisers, which have the unique ability to both strengthen and inhibit dopamine-regulated functions in the brain, depending on the base level of dopamine activity. Dopamine is an important neurotransmitter in the brain, and the dopaminergic system plays a central role in the control of motor and mental functions. In preclinical studies dopaminergic stabilisers have demonstrated the ability to stabilise motor, cognitive and psychiatric dysfunction, and they do this without compromising normal brain functions.

NeuroSearch is evaluating pridopidine in a pivotal programme for the treatment of Huntington's disease, comprising of a European Phase III study, MermaiHD, and a North American Phase IIb confirmatory study, HART. Pridopidine has previously been evaluated in a Phase II Proof of Concept study in Huntington's disease with positive results showing a statistically significant improvement in patients' motor function (gait and parkinsonism) as well as improvements in their attention and psychiatric symptoms. Further, the agent has been studied in clinical Phase I studies in Huntington's disease, Parkinson's disease and schizophrenia with favourable and consistent results.

Pridopidine was discovered by NeuroSearch, which holds the global rights to the compound. Both the European (EMEA) and the US (FDA) Health Authorities have granted pridopidine orphan drug designation for the treatment of Huntington's disease. Huntington's diseaseHuntington's disease is a fatal, hereditary neurodegenerative genetic disorder, which leads to damage of the nerve cells in certain areas of the brain including the basal ganglia and the cerebral cortex. Patients with Huntington's disease experience a wide variety of symptoms, including severe motor disturbances (both lack of voluntary movements and involuntary movements), cognitive impairment and psychiatric disorders. Symptoms onset is typically around 35 and 45 years of age and patients hereafter have a life expectancy of 10 to 15 years.
The disease occurs at a rate of about one in every 10,000 in most western countries with an estimated 70,000 affected patients in North America and Europe. In other parts of the world the prevalence of Huntington's disease is lower, and the total number of patients affected with the disease outside North America and Europe is estimated at 30,000 to 35,000. The rate of diagnose also varies among geographic regions. After symptoms onset the disease progresses without remission, and eventually every person afflicted by Huntington's disease will require full-time care. There is currently no cure or effective treatment for Huntington's disease and only a limited number of novel drugs in development.About NeuroSearch - Company profileNeuroSearch (NEUR) is a Scandinavian biopharmaceutical company listed on NASDAQ OMX Copenhagen. The core business of the company covers the development of novel pharmaceutical agents, based on a broad and well-established drug discovery platform focusing on ion channels and central nervous system (CNS) disorders. A substantial share of the activities is partner financed through strategic alliances with Janssen Pharmaceutica, Eli Lilly and Company and GlaxoSmithKline (GSK), and a license collaboration with Abbott. The drug pipeline comprises eight clinical (Phase I-III) development programmes: Huntexil™ (pridopidine) for Huntington's disease (Phase III), tesofensine for obesity (Phase III ready), ABT-894 for ADHD (Phase II) in partnership with Abbott, ACR343 for schizophrenia (Phase II ready), ACR325 to treat dyskinesias in Parkinson's disease (Phase Ib), ABT-560 for the treatment of cognitive dysfunctions (Phase I) in collaboration with Abbott, NSD-788 for anxiety (Phase I) and NSD-721 for social anxiety disorder (Phase I) in partnership with GSK. In addition, NeuroSearch has a broad portfolio of preclinical drug candidates and holds equity interests in several biotech companies.

For those who love their pets

This is a great article on what not to feed your pets. Lucky is my little boy. I know a lot of you love your pets, as much as I do.

http://pets.webmd.com/default.htm

No Health Insurance, Higher Death Risk

No Health Insurance, Higher Death Risk

Study: 45,000 U.S. Deaths Per Year May Be Linked to Lack of Health Insurance

Sept. 17, 2009 -- In a new study, researchers estimate that 45,000 deaths per year in the U.S. are associated with not having health insurance.

That estimate appears in the advance online edition of the American Journal of Public Health.
Data came from about 9,000 people aged 17 to 64 who took part in a government health survey between 1988 and 1994. They were followed through 2000.

During those years, about 3% of the participants died. People without any health insurance were 40% more likely than people with health insurance to die during the years studied, regardless of factors such as age, gender, race, income, education, health status, BMI ( body mass index), exercise, smoking, and alcohol use.

The researchers then applied that finding to U.S. census data. "We calculated approximately 44,789 deaths among working-age Americans in 2005 associated with the lack of insurance," write the researchers, who included Andrew Wilper, MD, MPH.
Wilper worked on the study while at the Cambridge Health Alliance, which is associated with the Harvard Medical School. Wilper now works at the University of Washington.

Wilper's team can't rule out other factors that could have affected the results. But they note that people without health insurance often don't get preventive care or have a steady source for medical care, which could be risky.

Pain

I have been in pain last night. Three times today. I feel like kicking, so uncomfortable. It drives me insane. You can't let HD ruin your life .Never give up. Never lose hope of a cure. There always is rome for hope. Never lose site of the light. It will guide you though the storm. The light, will always shine bright. It will never dull. Always there, when we need it. We can survive, together. Don't let HD take over. Fight it with me. We need to fight, our life is on the line. Our lives are worth it Don't forget that. We deserve to be here. Make life worth it. Fight for it. Fight for happiness. Take all of the bumps and the lumps. Deal with it.Fight for your soul back. Don't give in. Fight to keep your soul. It will help you, in the fire. Don't get lost in the fire. Keep out. Hope is what we need. Hope is what we bleed. We can't survive without hope. We need hope daily, to survive. Live with me. Keep focused on living. We can fight HD. We can win. There is hope everyday. It grows everyday. Believe and we can achieve anything.

In Pain

Today I felt pain all over. I also felt like I had to freak out and kick. I did at Special O. It was in my mid section, it felt like that. This has happened, when I sleep. It is not like it was today. It was just legs. Today is was all over. I hate that feeling. Otherwise I am healthy. My meds are working great, since they got upped. Gary is getting his licence pulled. It will make him more depressed. He uses that for fun. It was hard for my Mom to lose her licence. I never drove. I don't have anything to lose. Accept the changes. I am sick, we are sick. We just have to make the most of our life. Never let HD take away our coping skills. we are strong.We have the strength to fight. Fight to maintain our life. This is our life. Take it back. Never give in. Fight. We need to feel happy. We deserve to be happy. We deserve a life worth living. We need that. Fight with me. Smile in the face of HD. It shall never take over us. We can change our situation. Be happy. Don't live in darkness. Don't ever give up.

Fatigue Fighters — Six Quick Ways To Boost Energy

When you're dragging from all that multi-tasking, here are proven strategies to fight off fatigue

http://women.webmd.com/features/fatigue-fighters-six-quick-ways-boost-energy?ecd=wnl_lbt_091609

Site Fights

My Site Fights is starting. Click on my Site Fights to vote for me. I love this completion. Every week you battle other sites. The more votes you get, let's you get higher standing. They even have playoffs.

More Updates

I updated my story.

Bowling

Bowling was fun today. I did great. I love to bowl. Once again, I am healthy. No symptoms. Accept HD. Don't live in denial. That is a bad place to be. If you live that way, you could never be happy.You have to accept to move on. You don't want to live alone in fear, loney. Who wants that? It is not a good way to live. My family, never lived in denial. Accept and move on. Live, the way we are supposed too. Just live. Don't hide in the dark and hide. Come out and show yourself. Trevor got accepted to Nursing school today.

Sent From a WEAREHD Friend

The trailer of my film will be shown on 9/15 in Bethesda, MD as part of the Docs in Progress showcase of documentary film trailers. I will show the trailer and the audience will be encouraged to comment on its effectiveness. Anyone who has not seen the trailer may do so by going to

http://www.mowermovie.com./

While you are there join the Facebook fan page for my project and keep up to date with the latest news. The trailer is being recut to show how the sport of lawn mower racing is on the "cutting edge" of helping to find a cure for HD and I hope to have it online very soon.Thanks to everyone for their support.

Hip Fracture

What is a hip fracture?

A hip fracture is more than a broken bone. If you are older, breaking your hip can mean a major change in your life. You will likely need surgery, and it can take as long as a year to recover. Activity and physical therapy can help you get your strength and mobility back. You are likely to need support from family or a caregiver as you recover.

http://firstaid.webmd.com/tc/hip-fracture-topic-overview?ecd=wnl_hbn_090709

5 Things to Do About Health Care Reform Right Now

5 Things to Do About Health Care Reform Right Now

Confused by the debate about health care reform? You’re not the only one.
“Based on what they see on the news, I think it’s impossible for people to understand what’s happening,” says Alwyn Cassil, director of public affairs at the Center for Studying Health System Change in Washington, D.C. “Health care reform is a lot more complicated than all the finger-pointing suggests.”

http://www.webmd.com/healthy-aging/features/5-things-do-health-care-reform-right-now?ecd=wnl_hbn_091409

HD Video Sent to me

Thought you might be interested in this. We finally made the news AND raised over $10000

http://www.youtube.com/watch?v=dTd1gmGk4o8

Internet is Back

We had a wiring problem. The company had problems with the wiring. We got the Internet back today. I am healthy today. I saw scary people. I also saw shiny circles. I had hallucinations today. I hardly get them anymore. My meds work good there. They come and go in cycles. Tomorrow, I get to bowl. I have so much fun doing it. My Special friends are great. They know my HD, and they help me tye my shoes. They also open the hard bottles of water, that I get. everyone is looking after me. The Coaches expecailly. I am having crazy brain fog. I will get into a sentence, and freeze. I lose track of what I am thinking. Some was abusing cats right beside Trevor's Dad's place. They threw two sweet kittens in a tree, and threw them in the garbage. We have PAWS, looking into it. We got the first animal Cop in Creston. He removed the abused and starving animals. Trevor and I went to Church yesterday. My first time ever. This was Trevor's Church when he was young. Everyone was really warm and welcoming. We will go every Sunday now. I meet a person there with Parkinson's. She was in the later stages. I have never met anyone here with a Movement Disorder. We are fast friends now. Trevor ran into friends there. Trevor wants to take the Care Aide course. Then he wants to upgrade to an LPN. He needs to do something either than labour. He is starting to get aches and pains. See your future. Look at the sun. Don't be sitting and hiding. Come out. You need your life. Live it load and proud. don't hide away. Get out. Have fun. Live your life, make it good. Don't hide away. It is not good , for anyone.

Pill Gets Stuck

What should I do if I am taking medication and the pills get stuck? This has happened to me several times. I'm not choking and can still talk, but I can feel the pill moving in my throat when I swallow.

Pills can get stuck when swallowed and cause significant problems through mechanisms that are not entirely understood. Some compounds, including medications that treat osteoporosis (Fosamax [alendronate], for example) are very irritating to the esophagus, and people taking these drugs are always instructed to sit upright for at least 30 minutes after taking the dose. This is because the medication can cause a problem known as esophagitis — inflammation of the esophagus that can lead to serious complications, including pain and bleeding. This problem requires two factors: a pill or capsule getting lodged in the esophagus, leading to a prolonged period of contact, and a compound that is either too acidic or basic for the esophagus. Other medications that can cause direct irritation to the esophagus include anti-inflammatory agents such as ibuprofen, tetracycline antibiotics, iron, and potassium.

To avoid the problem of pills getting stuck, prevention is clearly key. Follow these steps:
Never take a medication when you are lying down; instead, sit or stand when swallowing a pill.
Remain upright for at least 30 minutes afterward if possible.

Drink enough liquid — usually a minimum of eight ounces — when taking pills so that the pill is “chased” down.

If you feel the sensation of a pill being stuck, drinking fluids and eating small amounts of food such as bread may be helpful, if the medication can be taken with food. Call your doctor if the feeling persists despite these steps or if you feel pain. Treatment may include localized measures to decrease the inflammation, pills to decrease acid production if reflux is believed to be worsening the symptoms, or an upper GI endoscopy in rare cases.

Obama's Health Plan

Declaring that ''the time for bickering is over,'' a passionate President Barack Obama took a forceful stand for health care reform Wednesday night, explaining his objectives for change while denouncing distortions made by opponents.



http://www.webmd.com/healthy-aging/news/20090910/obamas-health-plan-the-debate-goes-on?ecd=wnl_day_091109

Canadian Research News

RESEARCH NEWS

Dr. Hayden Receives Order of British Columbia
Dr. Michael Hayden, Director of the Centre for Molecular Medicine and Therapeutics in Vancouver, BC will be receiving an appointment to the Order of British Columbia in 2009. He is one of 13 British Columbians who have contributed to the province in extraordinary ways. The Order of British Columbia is this province’s highest recognition of their excellence, their achievement, and their citizenship,

We congratulate Dr. Hayden on this latest achievement and honour.

To read the press release please visit
http://www.protocol.gov.bc.ca/protocol/news/nr_OBC_2009_recipients.pdf

SERVICES

New Staff

Southern Alberta

Please welcome Karl Lottes, M.A., R.S.W. as the new Resource Centre Director for Southern Alberta, who started on July 27, 2009. Karl comes to the HSC as an experienced, mature clinician who is well acquainted with the resources in Calgary. He has spent more than 30 years working with individuals, couples and families who have been dealing with multiple losses. As an experienced social worker, Karl is well acquainted with the community resources of Calgary and the surrounding areas.

Karl is available 20 hours/week to provide support and services to individuals and families affected by Huntington disease throughout Southern Alberta. This may be through counseling, guidance, support and/or education to family members and professionals involved with the care of those affected by Huntington disease. In addition, he will assist with service development through advocacy and networking.

Karl can be reached at klottes@huntingtonsociety.ca or 403-230-6966

Thunder Bay

Please welcome Heather Minthorn, H.B.S.W. as the new Individual and Family Services Worker for Thunder Bay. Heather completed her Honours Bachelor of Social Work degree at Lakehead University.

Heather is experienced with comprehensive Social Work assessments, supportive counselling, assisting with Long Term Care, and family mediation.

As of April, 2009 she has been in Tanzania where she completed a 4 month internship working with the Maasai for my Masters of Social Work degree. Her work involved "Communication For Social Change" which is bringing together community members to discuss pressing issues such as HIV/AIDS. She is currently completing her masters thesis on this topic.


Ontario HD Camp
Due to a mild respiratory illness affecting staff at the CNIB Lake Joseph Centre in Muskoka, this year’s annual Ontario HD camp was cancelled. All activities at the camp were cancelled until the end of August. HSC looks forward to next year’s camp and thanks all staff and volunteers for their hard work in planning this year’s camp.




Stephen Hurst: Stephen is businessman from PEI. He is a current member of the HSC Board and has served as Regional Representative for Atlantic Canada.
Christian Lejeune is a Financial Analyst, who is President of the Huntington Society of Quebec. His name is being put forward to represent HSQ.
Amaryllis 2009Now that spring has finally arrived, it’s time to celebrate by thinking about our signature Amaryllis plants coming into bloom. This annual fundraiser raises over $100,000 each year and provides much needed funding. With your support – and the dedication of other Amaryllis volunteers like you –our Amaryllis fundraiser raises critical funds for research, services, and education in the fight against Huntington disease.Place An OrderThe online order form is both secure and efficient, making it easy to place order for yourself, family and friends. Just visit the HSC website www.huntingtonsociety.ca. to place an online order, or send an e-mail to amaryllis@huntingtonsociety.ca or phone 1-800-998-7398. For those who have additional questions about the Amaryllis contest, feel free to contact us by phone or e-mail.
World CongressCan’t make the World Congress? We’ll bring you the highlights in the October issue of ITK and full coverage in the Winter Edition of Horizon.





VOLUNTEER DEVELOPMENT

Event Section of HSC Website Are organizing events for the Huntington Society of Canada? Educational Social and fund raising events can be posted on the Events section of the HSC website

As soon as you have your event confirmed

Send the information to Devin

Bonner dbonner@huntingtonsociety.ca with the text you want to put on the events page.

Online pledging – We also have fantastic new system for on line pledging. Contact us early so we can get you set up for online pledging and make it as easy as we can on anyone wishing to sponsor your event participants.

After your event To celebrate and recognize your volunteers and sponsors send your pictures and a short write up about your event. Remember that you need permission for any faces that are recognizable in you pictures

Staying ConnectedInterested in finding out about the latest research news from around the world, or what is happening in your local HD community or for caring for a person with HD? Please visit our website and fill out our confidential contact information form to receive email communications from HSC. According to your preferences, we’ll communicate with you in confidence by email about research findings, clinical trials, best practices of care, local and national events and happenings, volunteer opportunities, etc.

Pass on the message to your family, friends and other chapter members to visit our website and fill out the contact form. Click here to fill out the contact form

Campaign Every Amaryllis Inspires Hope!

We do this every year.
CampaignEvery Amaryllis Inspires Hope!
Each and every Amaryllis growing and blooming in homes and offices across Canada tells the stories of Canada’s Huntington’s community: stories of courage for those enduring HD, stories of excitement from our research community, stories of hope for those in the next generation and stories of impatience as we fight for a world free from Huntington’s.
Check out our 2009 Stats!
Order your Amaryllis today!
Join our 2009 Amaryllis Campaign and help us raise critical funds for the fight against Huntington disease. Help us grow a brighter future – be part of our search for a cure!
Our Amaryllis volunteers sell bulb kits to raise vital funds for our programs in research, services and education. Each and every Amaryllis kit we sell takes us one step closer to a cure for HD. Each and every Amaryllis kit blooming in someone’s home or business holds the promise of a world free from HD. Each kit contains one high-quality Orange Sovereign bulb, growing instructions, soil, pot and saucer, and are packaged in an attractive gift box. Bulbs can be planted immediately or stored in a cool, dry place for holiday gifts. Gorgeous orange-red blooms will appear approximately 6-8 weeks after planting. And don’t miss our blog by ‘Amy the Amaryllis’ or our photo gallery. If you have advice, comments or encouragement, please visit our forum and share your experience and ideas with other Amaryllis volunteers. Make sure you check out the latest news and articles also! Join our Amaryllis volunteers and help grow a brighter future. You can order cases of 12 kits to sell in your community – and we can help you every step of the way. Or, you can order a kit or two for your own enjoyment.Thank you for helping us grow a brighter future and fight Huntington’s!
Join our Amaryllis Campaign!
Order Cases (invoiced at a later date)
Click Here
To order single kits please contact the Huntington Society of Canada at 1-800-998-7398, amaryllis@huntingtonsociety.ca
If you are interested in pre-paying for your cases, please contact us at amaryllis@huntingtonsociety.ca or 1-800-998-7398

Canadian Money Raised

Chapter Events 2009
WOW! What an impressive accomplishment! Chapter events contributed over $300,000 to the fight against HD from January to June. Chapters are raising more funds than ever before and creating more awareness about HD in communities across Canada.

We celebrate all of our volunteer efforts and all of their hard work to make events happen and look forward to all the rest of the events to come!

Our hats are off to the many wonderful events held this past winter and spring!!

Month

Event

January

Toronto Raffle

February

Calgary’s Rotary Achieve and Toronto’s Casino Royale
March

YPHAD’s Toronto Bar and The Peterborough Basketball Tournament

April

Meyers Norris Penny - Dress Down Day and the Vernon Run to Finish Huntington’s

May

The Toronto GEMS Walk, The HD Quad Adventure, The Book Sale, The Peterborough Hunting for a Cure Relay Walk; The Calgary Walkathon, The Ottawa Run / Marathon, The Port Stanley Fun Fair; The Ramphos Fundraising Breakfast. The Saskatoon Yard Sale and The Russell

Huntington Historical Walk

June

The Saskatoon Walk , The Exeter Walk The Moncton Walk, The Saskatoon Quilt Raffle, The Saskatchewan Walk for a Cure Rose Valley; The Calgary Summer Splash, The Brandon Golf Tournament; The Ottawa Indy & casual day; The Peterborough Dinner, The Exeter Golf Tournament (CarlsonWagonLit-Ellison Golf Classic); The YPHAD Wine and Dine Event and the Toronto Run/ Walk for HD

CONGRATULATIONS TO EVERYONE WHO ORGANIZED AND PARTICIPATED!

No Monday Post/ Library/ Wiring Problem

Trevor might becoming a Care Aide

Trevor is in talks with the Creston College here. He has had two talks with the Staff. He might start in January. He wants to be a Care Aide, what I was. He wants to learn how to take care of me. I could not wish for a better Husband. This would also be a Career. Right now he is working two jobs, to pay rent. He works with a finishing mill, and his Dad. My Trevor would make a great Nurse. He is kind hearted, and patient. Everyone that knows him, thinks that too. I don't know how I ended up to be so lucky. His Mom thinks he will be a good Nurse. He might put his experience looking after me, instead of 7 months of work experience. My work experience, was with my Mom. I went to school at NAIT and graduated top of class. I was told I was too empathic and would get wounded a lot. I got that from my instructors. I could never do that. That is why I became a Nurse. To feel, to care. I had HD. It made me understand them better.I became a Care Aide, to look after my patients with Alzheimer's. I worked in Dementia wards, because know one wanted them. People would just dump them there, and never came back. We never did that to Grandma. My Grandpa was there everyday to feed her. I looked after Trevor's Grandma Molly. She had Alzheimer's too. I looked after her until she died

Internet Problems.

We are having net problems. Trevor is trying to figure it out. It might be a old modem or something else. Since, we joined, this company,we had problems. Trevor will find out. I am back at the Library for now. I love being married to a Computer Tech. He can bet any computer problem. They might send us a new one, that is TechSavy, our new company It would work better, with their software. Those two articles I posted today, break my heart. I don't know why we get treated like that. Sent to Jail. Poor sanitary care. Sick looking after the sick. A war Vet, who went on hunger strikes. We are lucky, to live where we live. We never have to live with persecution. Day by day with no running water. Give thanks every day that we are alive. Never forget the suffering. We can take away that suffering myself. Make it better. Make a big band aid. Heal the world, starting, with yourself.

The Last Act: Canadian War Veteran on Hunger Strike over Injustices

The Last Act: Canadian War Veteran on Hunger Strike over Injustices

Political Fasts, today, commonly known as hunger strikes, have been around for eons and utilized as a means of peaceful protest to raise public awareness in an effort to replace abuse and inequality with justice.

Outside the White House, people have organized in an historic strike called ‘Troops Home Fast’; Gandhi’s hunger strike gained international attention as he rallied the people of India and opposed British Colonial policies;

Ceasar Chavez and the United Farm Workers Hunger Strike attracted national attention and the support of Senator Robert F. Kennedy. And let us not forget Dr. King, Jr., and Marion Dunlop, a 20th century suffragette; all perfectly sane people who chose to deprive themselves of food so those they represented would not be deprived of their rights.

If the Media had not been interested in pursuing their stories, the People would have remained uninformed and these leaders for change would have achieved nada: Nothing gained. History not made.

On 6 April 2009, Canadian Forces Veteran, Steven Dixon began his own hunger strike. He is in a protest for justice, recognition of illnesses, benefits, transparency, accountability and reform within the Dept of Veteran’s Affairs. He proudly served his country and now suffers from emotional and physical injuries, as well as Huntington’s disease. We’ll all die someday but Steven Dixon is dying now. He has no lingering hope there will be a miracle. He has no illusions he’ll change The Larger World like Gandhi or King. He just wants to seize the moment and affect his smaller world. He knows he'll never see change in his lifetime, however, he hopes others will see it in theirs.

Before the final curtain drops, Steven wants, as a last act, to present a gift to his brothers and sisters in arms which he feels will give even further meaning to a life already full of service to others. He has engaged in this selfless act, not for himself, but for the greater number who have found themselves negated and abused within the veteran community.

How will those he acts for react? Will we gain strength and for once ‘ALL’ come together and support him? And when he slips away, will we honour his memory and carry on his legacy of not giving up when there is even one veteran in need? Steven doesn’t want to become a martyr; however, he may become just that, if the Government AND the veteran community don’t get their act together. The last numbers I’ve seen: 197,000 traditional war veterans; 588,000 Canadian Forces Veterans; 77,000 survivors of these two groups: Total-862,000. That’s one hell of a Cast, that doesn’t include a full complement of children, extended family and friends. If it ever mobilized, the politicians might take notice and actually give a damn.

What will be the national/international impact as Steven hastens towards his death? Sadly, his story made it as far as a small column in the B section of the April 2nd edition of the Chronicle Herald. Let’s face it-stories of Veterans fighting for their rights have become tiresome; they just aren’t sexy. No history in the making here. No journalistic awards presented on a black tie night.

And that’s just how the Government likes it. The Canadian public have been lulled into apathy by the repetitive and seductive tones of influential politicians singing the ever popular lyrics of the MPs hypnotic rhetoric: ‘We love our troops. We love our veterans. We support them. We’re doing more than enough for them.’

They’ve repeated it enough that they believe it. They’re hoping the rest of the nation does, too.

If this story does not gain momentum, then in all likelihood Steven will simply waste away as his body, quite literally, consumes itself and the public will be none the wiser. If the Public were to ever think critically, tune itself into the ineptness of Government and Mainstream Press and used their right to vote on more than Survivor or Canadian Idol, power would return to where it belongs; the Electorate.

Even if there was a desire to do so, moms and grand-moms, dads and grand-dads, sisters and brothers, sons and daughters, across this country, would not be given an opportunity to share their views. And if you should not agree with his method, look beyond to his message. The man and his message must be brought to every Canadian in all the nooks and crannies of this nation, because at one time or another, every village, city and outport has felt the loss of a family member, neighbour or friend who has served in uniform.

The method is just a sad by-product of the heartless, powerful few who will do anything to minimize the story, keeping it hidden in the back pages of a newspaper or keeping the public disinterested with their subtle political, powers of persuasion. Let’s not get lost in condoning or not condoning and put our focus where it belongs: On the bigger picture.

The Veterans have never wanted to place additional financial burden on the taxpayer; they’re taxpayers themselves. They’ve paid into their own programs and the Government has misused and absconded with their contributions. This same Government body attempts to mislead the public by implying they’re taking the food out of the taxpayer's mouth. Just who is doing the taking here? '

Recently, the Nova Scotia Government offered Lockheed Martin, a company that earned over $3B in profits last year, $1.8 million in payroll rebates and the Federal Government will throw in $1.4 Billion. I’m wondering if the Taxpayers of this country, who declare such support, would balk at the small fraction of money (veteran’s own money) it would take to fix all the abuses of the veterans. The Government has selective memory. It tends to forget it takes soldiers to run the equipment it buys and soldiers to fill boots on the ground; soldiers they’ve made a moral contract with if a soldier should become veteran.

It’s not the soldiers or veterans who place financial burdens on the Canadian people, it’s the Government. When war plans are made and costs calculated, add the human element. If the cost is too high, then resign our military efforts to guarding our sovereign nation; ensure our citizens are secure and their basic needs (health, housing, education and infrastructure) are met before lining the pockets of multi-billion $$$ profit making companies like Lockheed Martin.

Steven Dixon is the face of all the young men and women who have heard your call to arms. They’ve answered this call since the birth of our nation. They want the same things all Canadians want. They have the same hopes, dreams and fears of their fellow citizens: The difference is what they have been prepared to do for their nation and complete strangers who they regard as friends and family:

You.This is the ultimate gift they offer: “Greater love has no one than this; that one lay down his life…” What is done with this gift is an individual choice and one of conscience.

The death of a man is like the fall of a mighty nation (Czeslaw Milosz). It’s difficult to think about and accept, but this nation which has become desensitized, may not give more than a passing thought to Steven Dixon from Beaverbank, Nova Scotia. And for the life of me, I can’t fathom why he thinks we, in uniform or out, are the slightest bit worthy of his sacrifice in the first place. I hope he figures this out and lives his remaining weeks and months without giving one more thought to any of us. What Paris Hilton does is of more interest than what some veteran does.

Unfortunately, I don’t think this will happen. Steven seems determined to end his life with the same conviction he had living it. So I wonder, what will Joe and Jane Schmoe and Steven’s military/veteran family do before he goes from being warm and alive to cold and absent? If we chose to disassociate, then pray for a miracle to forget his face and his name.

However this whole story unfolds, I know he’ll haunt me. Long after you sleep the sleep of angels, I, for one, will not forget you, Steven Dixon.

Persons with Huntington's Disease Jailed in Juan De Costa, Colombia, South America, Part 1-- Phil Hardt

Persons with Huntington's Disease Jailed in Juan De Costa, Colombia, South America, Part 1-- Phil Hardt

Three hugely successful humanitarian trips reveal that the suffering of individuals with Huntington’s Disease (HD) exacerbated because of lack of knowledge, extreme poverty and widespread corruption in Colombia.

http://www.hdac.org/features/article.php?p_articleNumber=641