News Review SPR IN G 2011
Environmental Factors and Parkinson’s: What Have We Learned? By Caroline M. Tanner, M.D., Ph.D.
Scientists generally agree that most cases of Parkinson’s disease (PD) result from some combination of nature and nurture — the interaction between a person’s underlying genetic make-up and his or her life activities and environmental exposures. A simple way to describe this is that “genetics loads the gun and environment pulls the trigger.” In this formulation, “environment” has a very broad meaning — that is, it refers to any and all possible causes other than those that are genetic in origin. The interactions between genes and environment can be quite complex. Some environmental exposures may lower the risk of PD, while others may increase it. Similarly, some people have inherited a genetic makeup that makes them more or less susceptible to the effects of toxicants, or poisonous agents, than others. The effect of a combined exposure can be greater — or lower — than a single exposure. All of this means that the particular combination of factors
leading to PD is likely to be unique for each person. These combinations, in different ways, may trigger a common series of biological changes that will ultimately lead to the disease. Scientists are beginning to tease apart the non-genetic factors that influence PD risk. In particular, epidemiologists are working to identify differences in the experiences of people who develop PD, compared to those who do not. But identifying these risk factors can be difficult. And when we do identify them, they serve only as clues. They do not provide a direct explanation for the cause of Parkinson’s, so scientists must supplement these population studies with laboratory experiments. The following is a list of some of the risk factors for which we have found some evidence of an association with PD. For the most part, it is too soon to make recommendations for how to prevent Parkinson’s based on this research. However, these results may help us to understand the causes of PD, and provide direction for future research and therapy development.
NEWS IN BRIEF Proteins May Travel from Cell to Cell, Spreading Parkinson’s in the Brain A new study suggests that a damaged protein can spread from sick cells to healthy ones in the brain, providing a possible explanation for how Parkinson’s disease (PD) progresses. The study appears in the January 19 online edition of the Journal of Clinical Investigation. In people with Parkinson’s, neurons — the nerve cells in the brain that help control the body’s movements — develop clusters of a protein called alphasynuclein. When these proteins clump together, they are known as Lewy bodies, and these have been linked to the cell death that triggers PD. In earlier research, two separate teams — one led by Patrik Brundin, Ph.D., M.D., at Lund University in Sweden and the other led by Jeffrey Kordower, Ph.D., at the Parkinson’s Disease Foundation (PDF) Center for Parkinson’s Research at Rush University in Chicago — studied the brains of people with PD who had received transplants of healthy young neurons as a therapy. Both teams found that the newly transplanted neurons also developed Lewy bodies, suggesting that they “contracted” PD from >> Read more on page 2
IN THIS ISSUE
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Chock full o’ Nuts Helps Fight Parkinson’s See page 10 for full story
Get Involved in Parkinson’s Awareness Month
Spotlight on Research
Legal Issues & PD: Medicaid
The Advocate Report: Sue Dubman of Massachusetts
Advisory Council Member Raises $37,000
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News In Brief Continued from page 1
Shatter the Myths of Parkinson’s this April! APRIL 2011
Spread the Word
Sample Proclamation 2011 CITY/STATE PROCLAMATION TEMPLATE WHEREAS, Parkinson’s disease is a progressive neurological movement disorder of the central nervous system, which has a unique impact on each patient; and
working for a cure
WHEREAS, according to the Parkinson’s Action Network, the Parkinson’s Disease Foundation, the National Parkinson Foundation, the American Parkinson Disease Association and the National Institutes of Health, there are over one million Americans diagnosed with Parkinson’s disease; and
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WHEREAS, symptoms include slowness, tremor, difficulty with balance and speaking, rigidity, cognitive and memory problems; and
WHEREAS, although new medicines and therapies may enhance life for some time for people with Parkinson’s, more work is needed for a cure; and
WHEREAS, increased education and research are needed to help find more effective treatments with less side effects and ultimately a cure for Parkinson’s disease; and
WHEREAS, a multidisciplinary approach to Parkinson’s disease care includes local Wellness, Support, and Caregiver Groups; and 21
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the brain in which they were transplanted. In the new study, Dr. Brundin and his colleagues tested the idea that alphasynuclein can travel from one cell to another. First, the team studied the process in cell culture. They moved on to experiments with mice with PD symptoms, that showed excess alpha-synuclein in their brains. The researchers transplanted healthy neurons into the brains of these mice and observed their effects.
April is Parkinson’s Awareness Month. Over the years, you have told us that the public needs to better understand Parkinson's and we agree. This April, join the Parkinson’s community in shattering the myths of Parkinson’s by:
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• Alpha-synuclein did indeed move from one neuron to another in both cell culture and in living animals • There is a specific mechanism by which this travel takes place • When alpha-synuclein enters a healthy neuron, it can initiate or “seed” the formation of Lewy body clumps. What Does it Mean?
This study aimed to assess the “contagious protein” hypothesis of Parkinson’s, which theorizes that neurons may “infect” other neurons with damaged alpha-synuclein, a protein that seems to be important in determining how PD develops. In 1997, Stanley Pruziner, M.D., received the Nobel Prize for his surprising discovery that some damaged proteins, rather than live organisms such as viruses, can be infectious. Damaged or mis-folded proteins have since been implicated in such conditions as mad cow disease. The new study demonstrates that alpha-synuclein is able to enter and affect healthy neurons. It also suggests that the protein may initiate the formation of new Lewy body clumps which are the hallmark of Parkinson’s. Much about the nature of the alpha-synuclein “seeding” process remains unclear. Additional research is required to assess whether alpha-synuclein “infectivity” is a cause of PD disease progression, or is simply a minor aspect of the disease itself. Lastly, these results — if they are confirmed by future studies — suggest that the toxic form of alpha-synuclein should be seen as a target of new therapies.
Spreading the Word… • Focus the media on PD! Use our press releases, statistics and tips to help you tell your story. • Make Parkinson’s Awareness Month official in your state or city, using a sample proclamation from the toolkit. • Hang up posters from PDF around your community to publicize the need for a cure.
Educating Yourself & Others... • Shatter the myths of PD by participating in our video and photo campaign at www.pdf.org/parkinson_awareness. • Join PDF’s PD ExpertBriefing,“What’s in the Parkinson’s Pipeline?” by phone or online, on Tuesday, April 12. • Bring the Parkinson’s Quilt to your community, by renting an 8’ by 8’ block to show the impact of PD.
Supporting the Cure... • Raise funds for research by joining our “30 in 30” Parkinson’s Awareness Month Event Challenge. Sign up to hold your own fundraising event in April, whether it’s a bake sale, a walk or a 5K run and we’ll help you do it! Visit www.pdf.org/pdf_champion. • Set up your own web page in honor of someone who lives with PD. Visit www.pdf.org/pdf_champion. • Purchase the official PDF Parkinson’s Awareness Month TShirt at www.pdf.org/shop. PDF is offering a free 30-page 2011 toolkit with tips on ways to make a difference this coming April. Order your free copy today. (800) 457-6676 | www.pdf.org/parkinson_awareness | email@example.com
>> Read more on page 8
April is Parkinson’s Awareness Month 2
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on Research Supported by PDF Christina Vaughan, M.D., M.H.S. Christina Vaughan, M.D., M.H.S., has come full circle as a member of the Parkinson’s Disease Foundation (PDF) team. In her current role as an advisor to the PDF HelpLine, Dr. Vaughan — a post-doctoral Fellow in movement disorders at Rush Dr. Christina Vaughan University Medical Center in Chicago — helps to answer unusual and difficult questions about Parkinson’s disease (PD) and keeps our staff updated on new developments in research and care. But when Dr. Vaughan first came to PDF nine years ago, it was as an applicant for one of our Summer Student Fellowships. This program funds students at several levels, from advanced undergraduates to graduate and medical students, to pursue Parkinson’s-related summer research projects under the guidance of leaders in the field. Dr. Vaughan already had a personal interest in Parkinson’s, having
seen several of her loved ones live with the disease. But she was unsure at that time as to what form her career would take. After receiving a bachelor’s degree in neuroscience, she went on to complete a master’s degree in Health Science at Johns Hopkins University, where her focus was on mental health, aging and neurodegenerative disease. Her office-mate, a Parkinson’s nurse specialist named Lisette Bunting-Perry, Ph.D., suggested that Dr. Vaughan apply for the PDF grant to take advantage of an opening at the University of Pennsylvania Parkinson’s Disease and Movement Disorders Center, in Philadelphia, PA, on a study looking at the long-term effects of deep brain stimulation (DBS). (Dr. Bunting-Perry, a leader in nursing education, recently helped to develop an online nursing course in Parkinson’s, offered by PDF in collaboration with other PD organizations.) Dr. Vaughan was accepted and spent the summer of 2002 examining people living with Parkinson’s who had undergone DBS, and interviewing them about their post-surgery experience. During her time at Penn, she worked with several leaders in the Parkinson’s field, including her mentor Andrew D. Siderowf, M.D., whose latest study on cognitive testing for Parkinson’s was published on the PDF website just a few months ago. And where did Dr. Vaughan end
up? She maintained the focus on mental health that she began while at Hopkins, but is now combining this expertise with her knowledge of PD. Following the completion of her medical degree and a residency in neurology at the University of Pittsburgh, she moved to Rush (which is one of PDF’s research centers), where she is training to be a Parkinson’s specialist with a special interest in the mental health of people with Parkinson’s. As PDF Scientific Director Stanley Fahn, M.D., noted last year, “We need to be sure that the best talent is attracted to the challenge of solving Parkinson’s and helping those who live with it.” With doctors like Dr. Vaughan on board, we are hopeful for the future. Dr. Vaughan still remembers her PDF summer fellowship. She says it, “opened up opportunities to work with some of the best Parkinson’s researchers and to have a very meaningful clinical experience with people living with Parkinson’s.” She also noted that “while my plan to pursue neurology and movement disorders was first inspired by my family members with Parkinson’s, this fellowship definitely helped to strengthen that plan.” Dr. Vaughan’s 2002 fellowship was supported by PDF’s Summer Student Fellowships program, which in 2010 supported 15 individuals with $45,000 in funding. PDF’s grant to Rush University in 2010 totaled over $300,000.
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• Become a member of The James Parkinson Legacy Society • Combine your charitable giving with your estate and financial planning goals • Benefit from a substantial tax deduction • Receive guaranteed income for the rest of your life (800) 457-6676 | www.pdf.org | firstname.lastname@example.org
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Legal Issues and Parkinson’s: Medicaid for Long-Term Care
By Janna Dutton, J.D.
For people with Parkinson’s disease (PD) and their families who are thinking about the possible need for long-term medical care, it is important to understand what help may be available through Medicaid. As we have mentioned in previous installments of this four-part series Janna Dutton, J.D. covering legal issues and Parkinson’s, long-term care includes not just the services of a skilled nursing facility, but such resources as assisted-living communities and the inhome aides who can help you with personal needs such as dressing, shopping, eating and cooking. The term can also include community services. Medicaid, which is funded jointly by federal and state governments, is separate from Medicare, the program for older Americans. Medicaid helps people with few financial resources to pay for medical care and can pay for long-term care services. Determining eligibility for Medicaid, however, is complex, and varies from state to state. In general, to be eligible you will need to show family income below a certain level, but there are provisions to enable you to keep certain assets without losing eligibility. In the last three issues in this series, we reported on the importance of long-term care, and delegating decisions for health care and financial matters. In this final article, we discuss the basics of eligibility for long-term care under Medicaid. If you think that you may need help in paying for long-term care in the future, it is best to begin investigating Medicaid now. By planning ahead, you also can help ensure that your assets are protected.
The federal government establishes general guidelines for Medicaid. In general, in all states, to be eligible for Medicaid coverage of long-term care in a nursing home, assisted living, or inhome program, you must be: • over the age of 65, or disabled • able to show that you do not have enough income to pay for your needed care • able to show that you have not made a non-allowable transfer of assets during a certain period of time before your application (see details below)
By planning “ ahead, you also can help ensure that your assets are protected.
One of the most important things to understand about Medicaid is that each state administers its own Medicaid program. Because of this, the services that are covered by Medicaid vary significantly from state to state — as do the income limits that are used to establish eligibility for the program. In most states, as long as your accountable monthly income — that is, your net income after adjustment for certain allowable deductions — is less than the cost of your care, you will be eligible for Medicaid. Be aware that there are ways to protect certain assets to ensure you can provide for your needs and those of your family without losing your eligibility. Supporting Your Spouse
If you bring in most of the house-
hold income, and also need nursing home care, the eligibility rules will usually allow you to give some portion of your income to supporting your spouse who is still living at home. A spouse who lives at home is called, in legal terms, a “community spouse” (hereinafter described simply as “spouse”). The rules will also allow you to take a deduction for the funds you have set aside for your spouse if he or she qualifies for it. Allowable Assets
Some types of property are considered exempt from consideration for Medicaid eligibility. These include: • $2,000 in a bank account, for the purchase of clothing and other items • Homestead property (this helps protect your home, but in some cases the equity protected is limited) • Personal effects and household goods • Automobile worth $4,500 or less (if needed for medical transportation, modified, or for employment, the allowance is higher) • Burial plot, tangible burial items and exempt prepaid burial arrangements • An asset allowance for your spouse (calculating the amount allowed is complicated and varies by state) Transferring Assets
Medicaid programs have regulations about how you can transfer funds to others without putting your eligibility at risk, and recent legislation has made these regulations more stringent. For example, under the new law, the “look-back” for Medicaid eligibility is 60 months. This means that if today you are applying for Medicaid to cover long-term care, you must report on what you have done with your assets during the last five years. This provision is designed to make sure that people do not give away assets to make themselves eligible for Medicaid. If this review shows that you have made what is called a “nonallowable transfer” of funds or assets, you might be denied eligibility for
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Medicaid for a specified period. Some financial transfers are allowable; for instance, you can transfer unlimited assets to or for the benefit of any disabled person (that is, a person who meets the Social Security Administration definitions for being disabled and is receiving benefits). This person can be, but does not have to be, a child. Such a transfer would need to be part of a trust document or a power of attorney (see previous installments of this series for further information). Additional allowable financial transfers that will not affect your eligibility for Medicaid include: • Transfer to or for the benefit of an adult disabled child (SSA definitions of disabled) • Transfers to a trust for the benefit of a disabled person • Transfers made exclusively for reasons other than to become eligible for Medicaid • Transfers for fair market value (you can sell assets for fair value, but cannot give them away and then apply for Medicaid) • In cases where the imposition of a penalty period will cause a hardship (e.g., it would impact a person’s health or basic necessities such as food, clothing or shelter) • Certain transfers of homestead property (for example, to a spouse, to a disabled child, or to a caregiver child who has been living in the home for at least two years) Exempt Trusts
You can also plan for the future without losing eligibility by putting
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your assets into a trust — that is, a legal arrangement in which one person, the trustee, holds property for the benefit of another, the beneficiary. The funds held in one of these trusts can be used for your benefit while you continue to receive Medicaid. There are certain requirements, e.g., the trusts must be irrevocable, meaning they cannot be reversed and under certain circumstances (for example, if the beneficiary passes away), the trust must pay back Medicaid. There are two kinds of exempt “OBRA Trusts” — named for the Omnibus Budget Reconciliation Act of 1993 — that are authorized under federal law to help people with disabilities to plan for Medicaid. One of the approved uses of such a trust — in states where Medicaid would not pay for a private room in a nursing facility — would be to pay for the difference in rates between a private room and a shared room. Another would be to pay for additional services or facilities not typically paid for by Medicaid, such as recreation or a computer. OBRA Trusts are good planning devices, and can be set up at the last minute. If you are sure that you want to use this option in the future, be certain that you have provisions in your power of attorney or finances document allowing your agent to set up the trust if you are not fully capable. Applying for Medicaid
How can you get started? You can apply for Medicaid by contacting your local department of social services or human services and asking for a Medi-
caid application (this may be administered by your county, and may have a different name, such as “Department of Children and Families”). To fill out the application, you will need, among other things, your birth certificate, social security number, proof of address, and information about your finances and any insurance you have. But before you do this, remember that there are planning options that you can use in order to make the most of your assets. For help, you should consult a knowledgeable elder law attorney in your state. You can find one through the National Academy of Elder Law Attorneys. If possible, work with someone who is a certified elder law attorney (CELA). Remember, it still is important to get a referral to make sure you find an attorney with whom you are comfortable. As with other legal issues and Parkinson’s, if you think that it is likely you will need some sort of chronic long-term care, and you have no source of paying for it other than Medicaid, start right now to do your planning. This can put you and your loved one’s minds at ease and ensure your quality of care for the future. Ms. Dutton is an Eldercare Attorney with Dutton & Casey. She recently presented this topic at one of PDF’s PD ExpertBriefings. To learn more about Medicaid, call (800) 633-4227 or go to: www.cms.hhs.gov. To find an elder law attorney, go to: www.naela.org.
Coming Up: Join PDF online or by phone for our upcoming PD ExpertBriefings What's in the PD Pipeline? Tuesday, April 12 | 1:00 PM – 2:00 PM ET
Understanding Pain in Parkinson's Tuesday, May 24 | 1:00 PM – 2:00 PM ET
Faculty: Michael Schlossmacher, M.D., University of Ottawa, Ottawa, Canada
Faculty: Jeffrey Wertheimer, Ph.D. Cedars-Sinai Medical Center, Los Angeles, CA
Pre-registration is recommended: (800) 457-6676 | www.pdf.org/parkinsononline | email@example.com
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Environmental Factors and Parkinson’s Continued from page 1
Age. About one percent of people over age 60 have Parkinson's disease, compared with just 0.001 percent of people 45 or younger. Gender. Parkinson’s is more common in men than in women. It is not known whether this is due to genetic factors, hormones or differences in behavior. Head Injury. Traumatic brain injury — injury that results in amnesia or loss of consciousness — has been associated with an increased risk of developing Parkinson’s years after the injury. Laboratory studies suggest that such injury may provoke inflammation in the brain, which could lead to the development of PD. Area of Residence. There are differences in the geographic distribution of PD. These could be due to differences in environmental factors, some of which are referenced below, and differences in genetic risk factors. Alternatively, they could be traced to differences in the methods that are used to count people with PD. While studies are too few to provide definitive patterns, some have been suggested. For example, Parkinson’s prevalence is higher in the Inuit population in Denmark than it is among other Danes, possibly reflecting a greater dietary intake among the Inuits of persistent organic pollutants such as polychlorinated biphenyls, or PCBs (see page 7). In the agricultural California central valley, living in a home near to fields where the pesticides paraquat and maneb were used was associated with PD in one report. Another study reported greater incidence of PD in urban areas with high levels of industrial emissions of the metal manganese, and possibly copper (see more on page 7). Occupation. Certain occupational categories or job titles have been associated with a higher incidence of PD, but results have been inconsistent. The relationship between welding (the process of fusing substances, usually metals) and PD has been a recent focus of controversy. In some reports for example, studies of people who are referred for medicolegal evaluation (an examination to determine the legal aspects of a workplace) welding has been suggested to cause Parkinson’s symptoms or earlier onset of PD. However, in most other studies, including several in large national occupational and disease registries, welding has not been associated with PD risk. A higher frequency of PD has been associated with many other occupations, but only a few occupations have been associated with PD in multiple studies, including agricultural and industrial workers. By contrast, lower rates of Parkinson’s are associated with shift work and jobs involving vigorous physical work. While we can hypothesize that the agricultural or industrial jobs may involve greater exposure to toxicant chemicals, further study in other populations is needed to understand if certain occupations are actually associated with a higher risk of PD. Some of the studies investigating specific toxicant exposures are described in the next sections. Pesticide Exposure. Of all the chemical exposures that have been linked to Parkinson’s, pesticides have been reported the most consistently. Recent research has shown higher rates of Parkinson’s among people who were exposed to pesticides over a long period of time as part of their work. Investigating other types of pesticide exposure, such as home use, is more challenging. However, hobby gardening and home pesticide use have each been associated with PD in one report. Although few studies have identified specific pesticides as leading to PD, those that have been so identified include the insecticides rotenone and permethrin (used in clothing and mosquito netting to kill mosquitos); organochlorines such as beta-hexachlorocyclohexane (beta-HCH — used in the United States from the 1950s to the 1970s); and the herbicides paraquat and 2,4- dichlorophenoxyacetic acid (2,4-D). It is important to note that
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Potential Protective Factors Scientists have also found certain factors that may actually reduce the risk of developing Parkinson’s. As with risk factors, not enough is known about these and they should not be tried without the counsel of a doctor. Coffee and tea. Drinking coffee or tea has been associated with a lower risk of Parkinson’s, most markedly so in men. Caffeine has direct effects on the brain, and some of these effects may help to cause a lower risk of PD. Uric acid or urate. This chemical occurs naturally in blood. High levels, associated with diets high in certain foods, such as meats, can cause gout and kidney stones. However, researchers have found that men with uric acid levels in the high end of the normal range have a lower incidence of Parkinson’s. Men with PD who have uric acid in the high normal range have a slower rate of PD progression. In women, who typically have lower urate levels, the same effects are not established. A drug that increases blood urate is being studied in a clinical trial in PD. Anti-inflammatory drugs. Several studies have shown that people who regularly take anti-inflammatory drugs such as ibuprofen have a lower risk of Parkinson’s. Inflammation is thought to play a role in causing Parkinson’s, and reducing inflammation may explain the reduced PD risk.
Dr. Tanner is the Director Parkinson's Institute
For a list of references used in this artic
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most people who are exposed to these pesticides do not go on to develop Parkinson’s. The herbicide 2,4-D is one of the chemicals making up Agent Orange, used as a defoliant during the Vietnam war era. Although Agent Orange has not been proven to cause PD, the US Department of Veterans Affairs has ruled that veterans with PD who served in Vietnam between January 9, 1962 and May 7, 1975 are eligible to receive disability compensation from the Veterans Administration.
Smoking. Many studies have associated cigarette smoking with a decreased risk of PD. Researchers hypothesize that nicotine may block the damaging processes causing PD, but the exact effects are not known. A clinical trial to study nicotine in PD is planned.
Exposure to Metals. Occupational exposures to various metals have been suggested to be related to the development of PD. But long-term exposure to metals is not easily measured, and the results of studies measuring PD risk and specific metals have been inconsistent. For example, high dose manganese exposure, a metal mentioned earlier, is known to cause a form of parkinsonism called manganism. Whether there is a relationship between manganese exposure and PD has been a point of interest, with focus on welders who may be exposed to it. A recent review concluded that manganese is an unlikely cause of Parkinsonism in the US population of welders. Direct measurement of lead levels in bone and blood serum suggests a link between PD and lead exposure, with greater risk associated with greater lifetime exposure. Solvents and Polychlorinated Biphenyls (PCBs). Trichloroethylene (TCE) is a solvent used in many industries and is the most common organic contaminant in groundwater. Occupational exposure to TCE was found to be associated with Parkinson’s among workers whose factory jobs resulted in long-term (eight to 33 years) exposure to the solvent. In a study of discordant twins (that is, twin pairs in which just one of the members had PD), the twin who had been occupationally exposed to TCE was more likely to develop Parkinson’s than the one who had not. This link has also been observed in experiments in the laboratory.
Cholesterol levels. Some studies have suggested that the use of statins — drugs that are used to lower cholesterol levels — is associated with reduced PD risk. However, in other studies an association was also found between low blood cholesterol levels and increased PD risk. Understanding cholesterol metabolism may provide clues to the molecular mechanisms that cause PD.
Polychlorinated biphenyls (PCBs), mentioned earlier, are persistent organic pollutants that were used in industrial processes until the late 1970s. PCBs have been found in relatively high concentrations in the brains of people who had PD. Occupational exposure to PCBs has been associated with greater risk of Parkinson’s in women, but not in men, and those women who were exposed have shown evidence of injury to their dopamine systems (the systems disrupted in PD).
Body mass. People with higher vitamin D levels were at lower risk of PD in one study. Vitamin D has many beneficial effects that, theoretically, could help to prevent PD, and Vitamin D receptors (recognition sites) are found in the brain areas damaged in PD.
Genetic Predisposition. Often, a person’s genetic makeup will help to determine the effect of an environmental exposure. For example, agricultural workers exposed to pesticides were at an increased risk of PD only if they also had inherited a reduced ability to metabolize toxicants. In another study, head injury was associated with a higher risk of Parkinson’s only in people with one form of a particular gene; in people without this particular gene variant, head injury was not associated with a higher risk of PD. Increasingly, epidemiologists and geneticists are working together to identify combinations of genes and environmental exposures that are related to PD.
Exercise. Greater physical activity has been associated with lower risk of Parkinson’s. Studies in animals also support this.
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Observational studies cannot prove that an association is truly a cause of PD. This is because the kinds of studies that could pin down exact answers cannot be carried out on people. Instead, we must conduct experiments in the laboratory and then project the results of these tests as best we can to what happens in people. However, laboratory experiments can never give us the full picture of PD risk in humans. The final test can only be done through an iterative process, taking the clues gained from observations of human populations into the laboratory, and then bringing the laboratory results back again to the human population. Plausibility in the human framework provides the ultimate test for results from laboratory research. Our hope is that understanding environmental risk factors will lead to a better understanding not only of the causes of PD, but of other neurodegenerative disorders as well.
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Health care professionals and support group leaders are encouraged to order multiple copies for their patients and members. News In Brief Continued from page 2
New Tool is Approved to Help with Diagnosis of Parkinson’s
The US Food and Drug Administration (FDA), on January 17, approved the use of DaTscan, a novel imaging technique that can be used to help diagnose Parkinson’s disease (PD) in its early stages. The technique, which combines the injection of an iodine-based radioactive chemical with an imaging process (known as “SPECT”) that detects and measures the presence of dopamine, has been used successfully in Europe for more than a decade. What is DaTscan and what does it mean for you? To find out, PDF News & Review recently posed some of your questions to our Director of Research Programs, James Beck, Ph.D. Q: What is DaTscan? Dr. Beck: DaTscan is an imaging technology that uses small amounts of a radioactive drug to help determine how much dopamine is available in a person’s brain. A machine similar to but smaller than an MRI machine, called a “single photon emission computed tomography machine,” or SPECT scanner, measures the amount and location of the drug in the brain.
What Does it Mean?
Q: Can DaTscan diagnose Parkinson’s? Dr. Beck: DaTscans cannot diagnose Parkinson’s disease. These scans are used to help a doctor confirm a diagnosis. In Europe more than 300,000 people have undergone the procedure. A DaTscan can be used to help rule out other diseases that may have clinical symptoms similar to those seen in Parkinson’s — such as essential tremor — that do not show the deficiency in dopamine that marks Parkinson’s disease. However, it will not differentiate PD from those diseases that — like Parkinson’s — are marked by a dopamine deficiency, such as multiple system atrophy (MSA) or progressive supranuclear palsy (PSP). Q: What is the role of the DaTscan for people living with Parkinson’s? Dr. Beck: Currently, there is no objective test for Parkinson's disease. While the specificity and sensitivity of DaTscans are not 100 percent, the test can help doctors to confirm or refute the diagnosis they have made based on a clinical examination. DaTscans will therefore be helpful in people whose symptoms present an inconclusive or confusing diagnosis. Q: Are there any risks associated with DaTscan? Dr. Beck: Among some individuals, there
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have been reports of headache, nausea, vertigo, dry mouth, and mild to moderate dizziness. There have also been cases of hypersensitivity reaction and pain at the site of the injection. No other major sideeffects have been reported. Q: I have Parkinson’s. Should I get a DaTscan? Dr. Beck: Likely, no — especially if you are someone who has been diagnosed with Parkinson’s for several years and who responds well to standard Parkinson’s medications. A DaTscan is most useful for people whose diagnosis is clinically uncertain or who have failed to respond well to common Parkinson’s medication therapy. If a person is unable to see a Parkinson’s specialist or his or her clinical signs are not clearly those of PD, this is when a DaTscan may be deemed helpful. Q: How can I get a DaTscan? Dr. Beck: PDF recommends that you speak with your doctor to see if a DaTscan is right for you. If you are interested in learning more, we suggest you visit http://us.datscan.com/. Q: Is the DaTscan test covered by insurance, Medicare and Medicaid? Dr. Beck: DaTscan will be covered by Medicare and Medicaid. Insurers are likely to cover DaTscan but will policies vary, so contact your insurer for more information.
PAR KIN SON’S D ISEASE FOU N DATION
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The Advocate Report: Sue Dubman of Massachusetts What is one way to help accelerate the developvested interest in wanting to see treatments to stop progression and improve quality of life for people livment of new therapies for Parkinson’s disease (PD)? ing with Parkinson’s.” As Robin Elliott, Executive Director of the Parkinson’s She participated in the training in October 2010. Disease Foundation (PDF) noted Today, just five months into her new role as a Parkinin the last issue of this newsletter, son’s research advocate, she has already found several it is through “pairing” people ways to impact data standardization for Parkinson’s. with Parkinson’s — trained research advocates — with people in She says that the problem is that Parkinson’s researchers often collect and label data in different ways. government, science and industry For instance, one study will define its young onset PD to improve the process that brings participants as people younger than age 40, and anus new medicines. other will say they should be defined as everyone Over the past few years in Sue Dubman under age 50. Down the road, there is no way to comNews & Review, we have profiled several of the 100 individuals from 36 states who pare and share information across studies because the measurements are too different. comprise PDF’s Parkinson’s Advocates in Research Ms. Dubman is also working to solve this problem (PAIR) program. One welcome addition to this group through her service with the Coalition Against Major of research advocates is Sue Dubman, of Boston, MA. Diseases (CAMD)For the first year Critical Path Institute, after Ms. Dubman reWould You Like to PAIR Up for a nonprofit institute ceived her diagnosis of Parkinson’s Research? which brings together Parkinson’s in 2008, • If you are a person with PD who would like to learn industry and governshe said she “floated more about becoming part of PAIR… ment agencies to imdown the river of ‘deprove the development nial!’” Yet it did not • If would like to speak with PDF about partnering with of new therapies by take her long to get a research advocate at your institution, clinical study streamlining data. She or support group… involved with helping has also reviewed new the Parkinson’s comThen call us at (800) 457-6676; email us at email@example.com; data standards created munity in a way that or visit us at www.pdf.org/pair. by the National Instipowerfully leverages tute of Neurological her 15 years of profesDisorders and Stroke (NINDS) — a branch of the Nasional experience in government, health, information tional Institutes of Health (NIH) that funds PD retechnology and clinical research. She works with orsearch — and provided her expert feedback on behalf ganizations such as the Clinical Data Standards Interof PDF and the Parkinson’s community. change Consortium (CDSIC) on data standardization Why is this work important? As Ms. Dubman — that is, on finding ways to coordinate data collecputs it, “Data standards could speed up innovation, by tion across research studies testing new therapies. allowing scientists to focus on the bigger picture rather Ms. Dubman saw an opportunity when she read than administrative details. We all want new treatabout PDF’s three-day research advocacy training, the ments more quickly, and this is one way to improve annual Clinical Research Learning Institute. As she the process.” As she uses her combination of profesdescribes it, “When I was at the National Cancer Institute, I worked with many patient advocates so I was sional expertise and personal dedication to the cause, already familiar with what they do and how imporso does she help increase the voice of people with tant they are. As a person with Parkinson’s, I have a Parkinson’s — exactly the aim of PAIR. PDF’s Parkinson’s Advocates in Research (PAIR) program is a network of more than 100 research advocates from 36 states who work to bring educated consumer voices to important issues in Parkinson’s therapy development. This growing network is actively collaborating with scientists, government agencies and private industry to change the role that people with Parkinson’s play in the design and implementation of Parkinson’s research and programs.
PA R KIN SON’S DISEASE FOUNDATION
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N EW S & R EVIEW
Chock full o‘Nuts Partners with PDF to Fight Parkinson’s The Parkinson’s Disease Foundation (PDF) is excited to announce a new partnership with Chock full o’Nuts, maker of the well-known “heavenly coffee” and founder of the restaurant chain. PDF and Chock full o’Nuts share a common history, having both been founded by the late William Black (see the PDF/Chock story below). Now, the two are joining forces to fight Parkinson’s disease (PD), beginning with nationwide promotions to raise awareness around the country about the disease, the need to fund research for new treatments and a cure, and the availability of educational resources from PDF to help people manage their Parkinson’s. This partnership will begin just in time for Parkinson’s Awareness Month this April and it is coming to a community near you. Where should you look to find it? • Check your Sunday circulars on the weekend of March 27 for a special coupon and advertisement promoting Parkinson’s Awareness Month.
• Check out the Chock full o’Nuts coffee cans in your local grocery store. This spring, new cans will be featuring information about PDF’s mission to fight Parkinson’s disease. • If you live or work in New York City, or will be visiting the city, you may notice Chock full o’Nuts trucks promoting the fight against Parkinson’s and distributing free coffee. You may also visit Chock’s coffee shops, such as Chock 23 on West 23rd Street between Fifth and Sixth Avenues, to see cups and other items with information inviting people to join the fight against PD. Robin Elliott, PDF’s Executive Director, said of the partnership, “PDF has been singularly committed to finding the cause(s) and a cure for Parkinson’s disease since that day back in 1957 when Mr. Black first found out that his close friend and associate had developed Parkinson’s, and realized to his amazement that there were no effective treatments for the condition. We are certain that Mr. Black would be happy to know that the two businesses he founded are now partnering to push forward progress toward these goals and we thank Chock full o’Nuts for its support.”
The Story of PDF, Chock and William Black The creation of PDF in 1957 by William Black, founder of Chock full o’Nuts, a successful New York coffee and restaurant business, is in itself a story of support, good will and advocacy.
1952-1961 Mr. Black begins distributing Chock full o’Nuts brand of coffee in grocery stores.
Mr. Black sets up PDF to establish a research program aimed at finding an effective drug treatment for the disease. He makes two major gifts: one to Columbia University to help build the research laboratory with a floor dedicated to Parkinson’s research; the other to endow PDF.
1983 Page Morton Black, Mr. Black’s widow and the wellknown singer of the Chock full o’Nuts jingle, becomes Chairman of PDF. PDF founder William Black with his wife, Page Morton Black.
William Black opens his first Chock full o’Nuts Shop in New York City. He eventually opens more than 40 shops and switches his focus from nuts to coffee, but keeps the original name.
Mr. Black’s controller and close friend was diagnosed with Parkinson’s. Mr. Black is appalled to learn that no truly effective therapy is available, nor is any basic research being conducted on the disease.
PDF partners with the coffee company founded by Mr. Black to raise awareness of Parkinson’s. PDF continues to fund a major research program at Columbia University and also supports research programs at Weill Cornell Medical Center, Rush University Medical Center and the projects of individual investigators and fellows around the world, as well as runs print and online educational programs and research advocacy initiatives.
PA RKIN SON’S D ISEASE FOU N DATION
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PDF NEWS in action
Advisory Council Member Raises $37,000
Nearly 200 music lovers and others dedicated to the fight against Parkinson's disease (PD) gathered for the 8th Annual Music for Parkinson's concert on December 5, at Rye Country Day School in Rye, NY. The event, organized by Music for Parkinson's Research, raised $37,000 in net proceeds for the research programs of the Parkinson's Disease Foundation (PDF). The afternoon featured performances by several leading chamber music artists including John Stine, Gena Raps and the Attacca Quartet.
Tribute to PDF PPAC-ers
The Parkinson’s Disease Foundation (PDF) mourns the recent loss of two founding members of its People with Parkinson’s Advisory Council (PPAC), Lillian Snyder, of Wheaton, IL and Bruce Talbot, of Moretown, VT. PPAC was created to provide Lillian Snyder PDF with perspectives on research-funding priorities, community needs and ways to better serve people living with Parkinson's through education and advocacy programs. Ms. Snyder and Mr. Talbot began their terms in 2006. Ms. Snyder was diagnosed with Parkinson’s in 1998. Among her vari-
After the concert, guests enjoyed a wine and cheese reception and chatted with the musicians. Music for Parkinson's was founded by three individuals, led by
David Eger, Ph.D., who has worked with PDF for many years, in large part as an inaugural member of PDF's People with Parkinson's Advisory Council, a group that advises the foundation on its research, education and advocacy programs. Dr. Eger noted, “We were thrilled by the support from friends, family, community members and PDF staff and board members who came together to help raise funds to find the cure for this disease.”
ous contributions to PDF, she was an advocate for educating others about the disease. She wrote articles on how to explain Parkinson's to grandchildren and tips for moving to a new home, and championed brain donation. She was also a member of PDF’s Creativity and Parkinson’s Project and her painting, "The Birch Tree," was featured in PDF’s 2010 wall calendar. Mr. Talbot was diagnosed with Parkinson’s in 1994. He was best known as the enthusiastic captain of the PDF Pacers, at the annual Parkinson’s Unity Walk in New York. Dedicated to helping those living with Parkinson’s navigate its challenges, he was a contributor to the PDF newsletter, authoring, “Making a Move with Parkinson’s,” in the Spring 2007 issue. Mr. Talbot was one of the PPAC members who lobbied PDF for the
creation of PDF’s first Resource List. He touched PDF’s staff and board by creating a “proclamation” thanking PDF for being the first organization to have an adviBruce Talbot sory board made up of people affected by PD. His book on his journey with chronic illness, The Heart of the Matter, will be published posthumously. PDF Executive Director Robin Elliott noted, “Lillian was a true and beloved friend of PDF whose paintings and words brought hope to others. Bruce is remembered for the kindness, enthusiasm and grace that inspired everyone around him. We will certainly miss both of these dear friends.”
MPR Founder David Eger, PDF Executive Director Robin Elliott, PDF PPAC member Rhona Johnson
PDF is pleased to honor: Herbert Pardes, M.D. President & Chief Executive Officer of New York-Presbyterian Hospital & New York-Presbyterian Healthcare System
This award will be presented at PDF’s annual gala, Bal du Printemps
Tuesday, May 10, 2011 The Pierre Hotel New York, NY
(800) 457-6676 | firstname.lastname@example.org | www.pdf.org PA R KIN SON’S DISEASE FOUNDATION
Calendar Celebrate Spring Date: Wednesday, April 6 Place: LAVO, New York, NY Enjoy a night of cocktails and dancing, while supporting PDF’s research programs with the Young New Yorkers for the Fight Against Parkinson’s committee. For more information, contact Patrick Johnson at (800) 457-6676 or email@example.com. PD ExpertBriefing: large format What's in the PD Pipeline? Date: Tuesday, April 12 Time: 1:00 PM - 2:00 PM ET Join PDF for this upcoming free interactive educational seminar. Pre-register by calling (800) 457-6676, emailing firstname.lastname@example.org or visiting www.pdf.org.
Events 17th Annual Parkinson’s Unity Walk Date: Saturday, April 16 Place: Central Park, New York, NY Join the community for a one-mile walk to increase awareness and raise funds for PD research. For more information, call (866) PUW-WALK/(866) 789-9255 or visit www.unitywalk.org. Parkinson’s Disease: The Promise of Science; the Power of the Individual Date: Tuesday, May 10 Place: The Pierre Hotel, New York, NY Join PDF for a three-hour seminar on the latest in Parkinson’s science. Lunch is included and registration is required. For more information, contact Elizabeth Lee at (800) 457-6676 or email@example.com.
Bal du Printemps Date: Tuesday, May 10 Place: The Pierre Hotel, New York, NY Led by PDF Chairman, Page Morton format PDF’s annual gala, Bal du Printemps, is an elegant small Black, evening designed both to celebrate community and philanthropic leaders who work to advance the state of Parkinson’s and to raise funds for PDF. For more information, contact Patrick Johnson at (212) 923-4700 or firstname.lastname@example.org.
Parkinson’s Quilt Display Monday, April 4 through Friday, April 8 Peabody, MA With the help of quilter Diane Durkee, block #17 of the Parkinson’s Quilt will be on display at the Peabody Town Hall. Visit the quilt and see Mayor Michael Bonfanti officially proclaim Parkinson’s Awareness Month. For more information on displaying the quilt in your community, visit www.pdf.org/quilt. For more information on this and other quilt displays around the US, visit www.pdf.org/event_calendar.
The Parkinson’s Disease Foundation® (PDF®) is a leading national presence in Parkinson’s disease research, education and public advocacy. We are working for the nearly one million people in the US who live with Parkinson’s by funding promising scientific research and supporting people with Parkinson’s, their families and caregivers through educational programs and support services. Since its founding in 1957, PDF has funded over $85 million worth of scientific research in Parkinson’s disease, supporting the work of leading scientists throughout the world. If you have or believe you have Parkinson’s disease, then promptly consult a physician and follow your physician’s advice. This publication is not a substitute for a physician’s diagnosis of Parkinson’s disease or for a physician’s prescription of drugs, treatment or operations for Parkinson’s disease.
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(800) 457-6676 email@example.com www.pdf.org Main Office 1359 Broadway, Suite 1509 New York, NY 10018 P: (212) 923-4700 F: (212) 923-4778 Columbia University Office 710 West 168th Street New York, NY 10032
PDF BOARD OF DIRECTORS Officers Page Morton Black, Chairman Lewis P. Rowland, M.D., President Timothy A. Pedley, M.D., Vice President Stephen Ackerman, Treasurer Isobel Robins Konecky, Secretary Stanley Fahn, M.D., Scientific Director Directors Constance Woodruff Atwell, Ph.D. Karen Elizabeth Burke, M.D., Ph.D. Margo Catsimatidis Barbara Costikyan Peter Dorn George Pennington Egbert III Stephen B. Flood, Esq. Sarah Belk Gambrell Daniel Gersen, Esq. Stephanie Goldman-Pittel Arlene Levine Marshall Loeb Howard DeWitt Morgan Marie D. Schwartz Domna Stanton, Ph.D. Sandra Feagan Stern, Ed.D. Melvin S. Taub Martin Tuchman Executive Director Robin Anthony Elliott Editor Christiana Evers Managing Editor Melissa Barry Scientific Editor Blair Ford, M.D. Layout & Design Sharon Klein Graphic Design
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Parkinson's Disease Foundation Spring Newsletter '11