Parkinson's Disease Foundation Spring Newsletter '11

N E W S I N B R I E F

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I N T H I S I S S U E

SPRING 2011

Environmental Factors and Parkinson’s:What Have We Learned?

News Review

Get Involved in Parkinson’s Awareness Month 2

Spotlight on Research 3

Legal Issues & PD: Medicaid 4

The Advocate Report: Sue Dubman of Massachusetts 9

Advisory Council Member Raises $37,000 11

Proteins May Travel from Cell to Cell,Spreading Parkinson’s in the Brain

A new study suggests that a dam-aged protein can spread from sick cellsto healthy ones in the brain, providing apossible explanation for how Parkinson’sdisease (PD) progresses. The study ap-pears in the January 19 online edition ofthe Journal of Clinical Investigation.

In people with Parkinson’s, neurons— the nerve cells in the brain that helpcontrol the body’s movements — de-velop clusters of a protein called alpha-synuclein. When these proteins clumptogether, they are known as Lewy bod-ies, and these have been linked to thecell death that triggers PD.

In earlier research, two separateteams — one led by Patrik Brundin,Ph.D., M.D., at Lund University in Swe-den and the other led by Jeffrey Kor-dower, Ph.D., at the Parkinson’s DiseaseFoundation (PDF) Center for Parkinson’sResearch at Rush University in Chicago— studied the brains of people with PDwho had received transplants of healthyyoung neurons as a therapy. Both teamsfound that the newly transplanted neu-rons also developed Lewy bodies, sug-gesting that they “contracted” PD from

Chock full o’ Nuts Helps Fight Parkinson’s

See page 10 for full story

By Caroline M. Tanner, M.D., Ph.D.

Scientists generally agree that mostcases of Parkinson’s disease (PD) resultfrom some combination of nature andnurture — the interaction between aperson’s underlying genetic make-upand his or her life activities and envi-ronmental exposures. A simple way todescribe this is that “geneticsloads the gun and environ-ment pulls the trigger.”In this formulation,“environment” has avery broad meaning— that is, it refers toany and all possiblecauses other than thosethat are genetic in origin.

The interactions between genesand environment can be quite com-plex. Some environmental expo-sures may lower the risk of PD,while others may increase it. Simi-larly, some people have inherited a ge-netic makeup that makes them more orless susceptible to the effects of toxi-cants, or poisonous agents, than oth-ers. The effect of a combined exposurecan be greater — or lower — than asingle exposure. All of this means thatthe particular combination of factors

leading to PD is likely to be unique foreach person. These combinations, indifferent ways, may trigger a commonseries of biological changes that will ul-timately lead to the disease.

Scientists are beginning to teaseapart the non-genetic factors that influ-ence PD risk. In particular, epidemiolo-

gists are working to identifydifferences in the experiencesof people who develop PD,compared to those who donot. But identifying theserisk factors can be difficult.And when we do identify

them, they serve only asclues. They do not provide a

direct explanation for the causeof Parkinson’s, so scientists mustsupplement these population studieswith laboratory experiments.

The following is a list of some ofthe risk factors for which we havefound some evidence of an associationwith PD. For the most part, it is toosoon to make recommendations forhow to prevent Parkinson’s based onthis research. However, these resultsmay help us to understand the causesof PD, and provide direction for futureresearch and therapy development.

April is Parkinson’s Awareness Month.Over the years, you have told us thatthe public needs to better understandParkinson's and we agree. This April,join the Parkinson’s community inshattering the myths of Parkinson’s by:

Shatter the Myths of Parkinson’s this April!

PDF is offering a free 30-page 2011 toolkit with tips on ways to makea difference this coming April. Order your free copy today.

2 PARKINSON’S DISEASE FOUNDATION

News In Brief Continued from page 1

the brain in which they were transplanted.In the new study, Dr. Brundin and his

colleagues tested the idea that alpha-synuclein can travel from one cell to an-other. First, the team studied the processin cell culture. They moved on to experi-ments with mice with PD symptoms, thatshowed excess alpha-synuclein in theirbrains. The researchers transplantedhealthy neurons into the brains of thesemice and observed their effects.

Results• Alpha-synuclein did indeed move from

one neuron to another in both cell cul-ture and in living animals

• There is a specific mechanism by whichthis travel takes place

• When alpha-synuclein enters a healthyneuron, it can initiate or “seed” the for-mation of Lewy body clumps.

What Does it Mean?This study aimed to assess the “con-

tagious protein” hypothesis of Parkin-son’s, which theorizes that neurons may“infect” other neurons with damagedalpha-synuclein, a protein that seems tobe important in determining how PD de-velops. In 1997, Stanley Pruziner, M.D.,received the Nobel Prize for his surprisingdiscovery that some damaged proteins,rather than live organisms such asviruses, can be infectious. Damaged ormis-folded proteins have since been im-plicated in such conditions as mad cowdisease. The new study demonstratesthat alpha-synuclein is able to enter andaffect healthy neurons. It also suggeststhat the protein may initiate the formationof new Lewy body clumps which are thehallmark of Parkinson’s. Much about thenature of the alpha-synuclein “seeding”process remains unclear. Additional re-search is required to assess whetheralpha-synuclein “infectivity” is a cause ofPD disease progression, or is simply aminor aspect of the disease itself. Lastly,these results — if they are confirmed byfuture studies — suggest that the toxicform of alpha-synuclein should be seen asa target of new therapies.

>> Read more on page 8April is Parkinson’s Awareness Month

NEWS & REVIEWSPRING 2011

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2011 CITY/STATE PROCLAMATION TEMPLATE

WHEREAS, Parkinson’s disease is a progressive neurological movement disorder of thecentral nervous system, which has a unique impact on each patient; and

WHEREAS, according to the Parkinson’s Action Network, the Parkinson’s Disease Foun-dation, the National Parkinson Foundation, the American Parkinson Disease Associationand the National Institutes of Health, there are over one million Americans diagnosedwith Parkinson’s disease; and

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 forpeople with Parkinson’s, more work is needed for a cure; and

WHEREAS, increased education and research are needed to help find more effectivetreatments with less side effects and ultimately a cure for Parkinson’s disease; and

WHEREAS, a multidisciplinary approach to Parkinson’s disease care includes local Well-ness, Support, and Caregiver Groups; and

Sample Proclamation

21

Parkinson’s Awareness Month Toolkit

APRIL 2011

one community

working for a cure

Spreading the Word…

• Focus the media on PD! Use our press releases, statisticsand 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 andphoto campaign at www.pdf.org/parkinson_awareness.

• Join PDF’s PD ExpertBriefing,“What’s in the Parkinson’sPipeline?” by phone or online, on Tuesday, April 12.

• Bring the Parkinson’s Quilt to your community, by rentingan 8’ by 8’ block to show the impact of PD.

Supporting the Cure...

• Raise funds for research by joining our “30 in 30” Parkin-son’s Awareness Month Event Challenge. Sign up to holdyour own fundraising event in April, whether it’s a bakesale, a walk or a 5K run and we’ll help you do it! Visitwww.pdf.org/ pdf_champion.

• Set up your own web page in honor of someone who liveswith PD. Visit www.pdf.org/pdf_champion.

• Purchase the official PDF Parkinson’s Awareness Month T-Shirt at www.pdf. org/shop.

(800) 457-6676 | www.pdf.org/parkinson_awareness | [email protected]

Order your free toolkit today.

PARKINSON’S DISEASE FOUNDATION 3

NEWS & REVIEW SPRING 2011

seen several of her loved ones livewith the disease. But she was unsureat that time as to what form her ca-reer would take. After receiving abachelor’s degree in neuroscience, shewent on to complete a master’s degreein Health Science at Johns HopkinsUniversity, where her focus was onmental health, aging and neurodegen-erative disease.

Her office-mate, a Parkinson’snurse specialist named LisetteBunting-Perry, Ph.D., suggested thatDr. Vaughan apply for the PDF grantto take advantage of an opening at theUniversity of Pennsylvania Parkin-son’s Disease and Movement Disor-ders Center, in Philadelphia, PA, on astudy looking at the long-term effectsof deep brain stimulation (DBS). (Dr.Bunting-Perry, a leader in nursing edu-cation, recently helped to develop anonline nursing course in Parkinson’s,offered by PDF in collaboration withother PD organizations.)

Dr. Vaughan was accepted andspent the summer of 2002 examiningpeople living with Parkinson’s whohad undergone DBS, and interviewingthem about their post-surgery experi-ence. During her time at Penn, sheworked with several leaders in theParkinson’s field, including her mentorAndrew D. Siderowf, M.D., whose lat-est study on cognitive testing forParkinson’s was published on the PDFwebsite just a few months ago.

And where did Dr. Vaughan end

Supported by PDFonon ResearchResearch

Christina Vaughan, M.D., M.H.S.

Christina Vaughan, M.D.,M.H.S., has come full circle as amember of the Parkinson’s Disease

Foundation (PDF)team. In her cur-rent role as an ad-visor to the PDFHelpLine, Dr.Vaughan — apost-doctoral Fel-low in movementdisorders at RushUniversity Med-

ical Center in Chicago — helps to an-swer unusual and difficult questionsabout Parkinson’s disease (PD) andkeeps our staff updated on new devel-opments in research and care.

But when Dr. Vaughan first cameto PDF nine years ago, it was as an ap-plicant for one of our Summer StudentFellowships. This program funds stu-dents at several levels, from advancedundergraduates to graduate and med-ical students, to pursue Parkinson’s-re-lated summer research projects underthe guidance of leaders in the field.

Dr. Vaughan already had a per-sonal interest in Parkinson’s, having

up? She maintained the focus on men-tal health that she began while at Hop-kins, but is now combining thisexpertise with her knowledge of PD.Following the completion of her med-ical degree and a residency in neurologyat the University of Pittsburgh, shemoved to Rush (which is one of PDF’sresearch centers), where she is trainingto be a Parkinson’s specialist with a spe-cial interest in the mental health of peo-ple with Parkinson’s.

As PDF Scientific Director StanleyFahn, M.D., noted last year, “We needto be sure that the best talent is at-tracted to the challenge of solvingParkinson’s and helping those who livewith it.” With doctors like Dr. Vaughanon board, we are hopeful for the future.

Dr. Vaughan still remembers herPDF summer fellowship. She says it,“opened up opportunities to work withsome of the best Parkinson’s researchersand to have a very meaningful clinicalexperience with people living withParkinson’s.” She also noted that“while my plan to pursue neurologyand movement disorders was first in-spired by my family members withParkinson’s, this fellowship definitelyhelped to strengthen that plan.”

Dr. Vaughan’s 2002 fellowshipwas supported by PDF’s Summer Student Fellowships program, whichin 2010 supported 15 individuals with$45,000 in funding. PDF’s grant toRush University in 2010 totaled over $300,000.

Dr. Christina Vaughan

CREATE A PARKINSON’S LEGACY• 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

By opening a charitable gift annuity or including PDF as part of yourestate plan you will:

(800) 457-6676 | www.pdf.org | [email protected]



By Janna Dutton, J.D.

For people with Parkinson’s dis-ease (PD) and their families who arethinking about the possible need for

long-term medicalcare, it is importantto understand whathelp may be avail-able through Medi-caid. As we havementioned in previ-ous installments ofthis four-part seriescovering legal is-

sues and Parkinson’s, long-term careincludes not just the services of a skillednursing facility, but such resources asassisted-living communities and the in-home aides who can help you with per-sonal needs such as dressing, shopping,eating and cooking. The term can alsoinclude community services.

Medicaid, which is funded jointlyby federal and state governments, isseparate from Medicare, the programfor older Americans. Medicaid helpspeople with few financial resources topay for medical care and can pay forlong-term care services. Determiningeligibility for Medicaid, however, iscomplex, and varies from state to state.In general, to be eligible you will needto show family income below a certainlevel, but there are provisions to enableyou to keep certain assets without los-ing eligibility.

In the last three issues in this se-ries, we reported on the importance oflong-term care, and delegating deci-sions for health care and financial mat-ters. In this final article, we discuss thebasics of eligibility for long-term careunder Medicaid. If you think that youmay need help in paying for long-termcare in the future, it is best to begin in-vestigating Medicaid now. By plan-ning ahead, you also can help ensurethat your assets are protected.

General EligibilityThe federal government establishes

general guidelines for Medicaid. Ingeneral, in all states, to be eligible forMedicaid coverage of long-term care ina nursing home, assisted living, or in-home program, you must be:• over the age of 65, or disabled• able to show that you do not have

enough income to pay for yourneeded care

• able to show that you have notmade a non-allowable transfer of assets during a certain period oftime before your application (see details below)

One of the most important thingsto understand about Medicaid is thateach state administers its own Medi-caid program. Because of this, theservices that are covered by Medicaidvary significantly from state to state —as do the income limits that are used toestablish eligibility for the program.

In most states, as long as your ac-countable monthly income — that is,your net income after adjustment forcertain allowable deductions — is lessthan the cost of your care, you will beeligible for Medicaid. Be aware thatthere are ways to protect certain as-sets to ensure you can provide foryour needs and those of your familywithout losing your eligibility.

Supporting Your SpouseIf you bring in most of the house-

hold income, and also need nursinghome care, the eligibility rules will usu-ally allow you to give some portion ofyour income to supporting your spousewho is still living at home. A spousewho lives at home is called, in legalterms, a “community spouse” (here-inafter described simply as “spouse”).

The rules will also allow you totake a deduction for the funds youhave set aside for your spouse if he orshe qualifies for it.

Allowable AssetsSome types of property are consid-

ered exempt from consideration forMedicaid eligibility. These include:• $2,000 in a bank account, for the

purchase of clothing and other items• Homestead property (this helps pro-

tect your home, but in some casesthe 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 andexempt prepaid burial arrangements

• An asset allowance for your spouse(calculating the amount allowed iscomplicated and varies by state)

Transferring AssetsMedicaid programs have regula-

tions about how you can transfer fundsto others without putting your eligibil-ity at risk, and recent legislation hasmade these regulations more stringent.For example, under the new law, the“look-back” for Medicaid eligibility is60 months. This means that if todayyou are applying for Medicaid to coverlong-term care, you must report onwhat you have done with your assetsduring the last five years.

This provision is designed to makesure that people do not give away as-sets to make themselves eligible forMedicaid. If this review shows thatyou have made what is called a “non-allowable transfer” of funds or assets,you might be denied eligibility for

Legal Issues and Parkinson’s: Medicaidfor Long-Term Care

By planningahead, you alsocan help ensurethat your assetsare protected.

“

”

Janna Dutton, J.D.



Medicaid for a specified period. Some financial transfers are allow-

able; for instance, you can transfer un-limited assets to or for the benefit ofany disabled person (that is, a personwho meets the Social Security Adminis-tration definitions for being disabledand is receiving benefits). This personcan be, but does not have to be, a child.Such a transfer would need to be partof a trust document or a power of at-torney (see previous installments of thisseries for further information).

Additional allowable financialtransfers that will not affect your eligi-bility for Medicaid include:• Transfer to or for the benefit of an

adult disabled child (SSA definitionsof disabled)

• Transfers to a trust for the benefit ofa disabled person

• Transfers made exclusively for rea-sons other than to become eligiblefor Medicaid

• Transfers for fair market value (youcan sell assets for fair value, but can-not give them away and then applyfor Medicaid)

• In cases where the imposition of apenalty period will cause a hardship(e.g., it would impact a person’shealth or basic necessities such asfood, clothing or shelter)

• Certain transfers of homesteadproperty (for example, to a spouse,to a disabled child, or to a caregiverchild who has been living in thehome for at least two years)

Exempt TrustsYou can also plan for the future

without losing eligibility by putting

your assets into a trust — that is, alegal arrangement in which one person,the trustee, holds property for the bene-fit of another, the beneficiary. Thefunds held in one of these trusts can beused for your benefit while you con-tinue to receive Medicaid. There arecertain requirements, e.g., the trustsmust be irrevocable, meaning they can-not be reversed and under certain cir-cumstances (for example, if thebeneficiary passes away), the trust mustpay back Medicaid.

There are two kinds of exempt“OBRA Trusts” — named for the Om-nibus Budget Reconciliation Act of1993 — that are authorized under fed-eral law to help people with disabilitiesto plan for Medicaid. One of the ap-proved uses of such a trust — in stateswhere Medicaid would not pay for aprivate room in a nursing facility —would be to pay for the difference inrates between a private room and ashared room. Another would be topay for additional services or facilitiesnot typically paid for by Medicaid,such as recreation or a computer.

OBRA Trusts are good planningdevices, and can be set up at the lastminute. If you are sure that you wantto use this option in the future, be cer-tain that you have provisions in yourpower of attorney or finances docu-ment allowing your agent to set upthe trust if you are not fully capable.

Applying for MedicaidHow can you get started? You can

apply for Medicaid by contacting yourlocal department of social services orhuman services and asking for a Medi-

Coming Up:

Understanding Pain in Parkinson's Tuesday, May 24 | 1:00 PM – 2:00 PM ET

Faculty: Jeffrey Wertheimer, Ph.D.Cedars-Sinai Medical Center, Los Angeles, CA

caid application (this may be adminis-tered by your county, and may have adifferent name, such as “Department ofChildren and Families”). To fill out theapplication, you will need, amongother things, your birth certificate, so-cial security number, proof of address,and information about your financesand any insurance you have.

But before you do this, rememberthat there are planning options thatyou can use in order to make the mostof your assets. For help, you shouldconsult a knowledgeable elder law at-torney in your state. You can findone through the National Academy ofElder Law Attorneys. If possible,work with someone who is a certifiedelder law attorney (CELA). Remem-ber, it still is important to get a refer-ral to make sure you find an at torneywith whom you are comfortable.

As with other legal issues andParkinson’s, if you think that it is likelyyou will need some sort of chroniclong-term care, and you have no sourceof paying for it other than Medicaid,start right now to do your planning.This can put you and your loved one’sminds at ease and ensure your qualityof care for the future.

Ms. Dutton is an Eldercare Attor-ney with Dutton & Casey. She recentlypresented this topic at one of PDF’s PDExpertBriefings.

Pre-registration is recommended: (800) 457-6676 | www.pdf.org/parkinsononline | [email protected]

Join PDF online or by phone for our upcoming 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.

What's in the PD Pipeline?Tuesday, April 12 | 1:00 PM – 2:00 PM ET

Faculty: Michael Schlossmacher, M.D., University of Ottawa, Ottawa, Canada



Age. About one percent of people over age 60 have Parkinson's disease, comparedwith just 0.001 percent of people 45 or younger.

Gender. Parkinson’s is more common in men than in women. It is not knownwhether this is due to genetic factors, hormones or differences in behavior.

Head Injury. Traumatic brain injury — injury that results in amnesia or loss of con-sciousness — has been associated with an increased risk of developing Parkinson’syears after the injury. Laboratory studies suggest that such injury may provoke in-flammation 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 refer-enced below, and differences in genetic risk factors. Alternatively, they could betraced to differences in the methods that are used to count people with PD. Whilestudies are too few to provide definitive patterns, some have been suggested. For ex-ample, Parkinson’s prevalence is higher in the Inuit population in Denmark than it isamong other Danes, possibly reflecting a greater dietary intake among the Inuits ofpersistent 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 thepesticides paraquat and maneb were used was associated with PD in one report. An-other study reported greater incidence of PD in urban areas with high levels of indus-trial emissions of the metal manganese, and possibly copper (see more on page 7).

Occupation. Certain occupational categories or job titles have been associated witha higher incidence of PD, but results have been inconsistent. The relationship be-tween welding (the process of fusing substances, usually metals) and PD has been arecent focus of controversy. In some reports for example, studies of people who arereferred for medicolegal evaluation (an examination to determine the legal aspects ofa workplace) welding has been suggested to cause Parkinson’s symptoms or earlieronset of PD. However, in most other studies, including several in large national occu-pational and disease registries, welding has not been associated with PD risk.

A higher frequency of PD has been associated with many other occupations, but onlya few occupations have been associated with PD in multiple studies, including agri-cultural and industrial workers. By contrast, lower rates of Parkinson’s are associ-ated with shift work and jobs involving vigorous physical work. While we canhypothesize that the agricultural or industrial jobs may involve greater exposure totoxicant chemicals, further study in other populations is needed to understand if cer-tain occupations are actually associated with a higher risk of PD. Some of the studiesinvestigating specific toxicant exposures are described in the next sections.

Pesticide Exposure. Of all the chemical exposures that have been linked to Parkin-son’s, pesticides have been reported the most consistently. Recent research has shownhigher rates of Parkinson’s among people who were exposed to pesticides over a longperiod 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 pesti-cide use have each been associated with PD in one report. Although few studies haveidentified specific pesticides as leading to PD, those that have been so identified in-clude the insecticides rotenone and permethrin (used in clothing and mosquito nettingto kill mosquitos); organochlorines such as beta-hexachlorocyclohexane (beta-HCH— used in the United States from the 1950s to the 1970s); and the herbicidesparaquat and 2,4- dichlorophenoxyacetic acid (2,4-D). It is important to note that

Environmental Factors and Parkinson’sContinued from page 1

Coffee and tea. Drinking coffee ortea has been associated with alower risk of Parkinson’s, mostmarkedly so in men. Caffeine has di-rect effects on the brain, and someof these effects may help to cause alower risk of PD.

Uric acid or urate. This chemicaloccurs naturally in blood. High lev-els, associated with diets high in cer-tain foods, such as meats, can causegout and kidney stones. However,researchers have found that menwith uric acid levels in the high endof the normal range have a lower in-cidence of Parkinson’s. Men withPD who have uric acid in the highnormal range have a slower rate ofPD progression. In women, whotypically have lower urate levels, thesame effects are not established. Adrug that increases blood urate isbeing studied in a clinical trial in PD.

Anti-inflammatory drugs. Sev-eral studies have shown that peoplewho regularly take anti-inflamma-tory drugs such as ibuprofen have alower risk of Parkinson’s. Inflamma-tion is thought to play a role in caus-ing Parkinson’s, and reducingin flammation may explain the re-duced PD risk.

Potential Protective Factors

Scientists have also found certainfactors that may actually reduce therisk of developing Parkinson’s.

As with risk factors, not enough isknown about these and they shouldnot be tried without the counsel

of a doctor.

Dr. Tanner is the Director of Clinical Research at the Parkinson's Institute and Clinical Center.

For a list of references used in this article, please contact PDF at [email protected].



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 defo-liant during the Vietnam war era. Although Agent Orange has not been proven tocause PD, the US Department of Veterans Affairs has ruled that veterans with PDwho served in Vietnam between January 9, 1962 and May 7, 1975 are eligible to re-ceive disability compensation from the Veterans Administration.

Exposure to Metals. Occupational exposures to various metals have been sug-gested to be related to the development of PD. But long-term exposure to metals isnot easily measured, and the results of studies measuring PD risk and specific metalshave been inconsistent. For example, high dose manganese exposure, a metal men-tioned earlier, is known to cause a form of parkinsonism called manganism. Whetherthere is a relationship between manganese exposure and PD has been a point of inter-est, with focus on welders who may be exposed to it. A recent review concluded thatmanganese is an unlikely cause of Parkinsonism in the US population of welders. Di-rect measurement of lead levels in bone and blood serum suggests a link between PDand lead exposure, with greater risk associated with greater lifetime exposure.

Solvents and Polychlorinated Biphenyls (PCBs). Trichloroethylene (TCE) is asolvent used in many industries and is the most common organic contaminant ingroundwater. Occupational exposure to TCE was found to be associated withParkinson’s among workers whose factory jobs resulted in long-term (eight to 33years) exposure to the solvent. In a study of discordant twins (that is, twin pairs inwhich just one of the members had PD), the twin who had been occupationally ex-posed 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.

Polychlorinated biphenyls (PCBs), mentioned earlier, are persistent organic pollutantsthat were used in industrial processes until the late 1970s. PCBs have been found inrelatively high concentrations in the brains of people who had PD. Occupational ex-posure to PCBs has been associated with greater risk of Parkinson’s in women, butnot in men, and those women who were exposed have shown evidence of injury totheir dopamine systems (the systems disrupted in PD).

Genetic Predisposition. Often, a person’s genetic makeup will help to determinethe effect of an environmental exposure. For example, agricultural workers exposedto pesticides were at an increased risk of PD only if they also had inherited a reducedability to metabolize toxicants. In another study, head injury was associated with ahigher risk of Parkinson’s only in people with one form of a particular gene; in peo-ple without this particular gene variant, head injury was not associated with a higherrisk of PD. Increasingly, epidemiologists and geneticists are working together to iden-tify combinations of genes and environmental exposures that are related to PD.

The Search for ProofObservational studies cannot prove that an association is truly a cause of PD. Thisis because the kinds of studies that could pin down exact answers cannot be carriedout on people. Instead, we must conduct experiments in the laboratory and thenproject 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. Thefinal test can only be done through an iterative process, taking the clues gained fromobservations of human populations into the laboratory, and then bringing the labo-ratory results back again to the human population. Plausibility in the human frame-work provides the ultimate test for results from laboratory research. Our hope isthat understanding environmental risk factors will lead to a better understandingnot only of the causes of PD, but of other neurodegenerative disorders as well.

Smoking. Many studies have asso-ciated cigarette smoking with a de-creased risk of PD. Researchershypothesize that nicotine may blockthe damaging processes causing PD,but the exact effects are not known.A clinical trial to study nicotine in PDis planned.

Cholesterol levels. Some studieshave suggested that the use of statins— drugs that are used to lower cho-lesterol levels — is associated with re-duced PD risk. However, in otherstudies an association was also foundbetween low blood cholesterol levelsand increased PD risk. Understandingcholesterol metabolism may provideclues to the molecular mechanismsthat cause PD.

Body mass. People with higher vi-tamin D levels were at lower risk ofPD in one study. Vitamin D hasmany beneficial effects that, theoret-ically, could help to prevent PD, andVitamin D receptors (recognitionsites) are found in the brain areasdamaged in PD.

Exercise. Greater physical activityhas been associated with lower risk ofParkinson’s. Studies in animals alsosupport this.

Dr. Tanner is the Director of Clinical Research at the Parkinson's Institute and Clinical Center.

For a list of references used in this article, please contact PDF at [email protected].


News In Brief Continued from page 2 Q: Can DaTscan diagnose Parkinson’s?

Dr. Beck: DaTscans cannot diagnoseParkinson’s disease. These scans areused to help a doctor confirm a diagnosis.In Europe more than 300,000 people haveundergone the procedure. A DaTscan canbe used to help rule out other diseasesthat may have clinical symptoms similarto those seen in Parkinson’s — such asessential tremor — that do not show thedeficiency in dopamine that marks Parkin-son’s disease. However, it will not differ-entiate PD from those diseases that —like Parkinson’s — are marked by adopamine deficiency, such as multiplesystem atrophy (MSA) or progressivesupranuclear palsy (PSP).

Q: What is the role of the DaTscan forpeople living with Parkinson’s?Dr. Beck: Currently, there is no objectivetest for Parkinson's disease. While thespecificity and sensitivity of DaTscans arenot 100 percent, the test can help doctorsto confirm or refute the diagnosis theyhave made based on a clinical examina-tion. DaTscans will therefore be helpful inpeople whose symptoms present an in-conclusive or confusing diagnosis.

Q: Are there any risks associated with DaTscan?Dr. Beck: Among some individuals, there

have been reports of headache, nausea,vertigo, dry mouth, and mild to moderatedizziness. There have also been cases ofhypersensitivity reaction and pain at thesite of the injection. No other major side-effects have been reported.

Q: I have Parkinson’s. Should I get aDaTscan?Dr. Beck: Likely, no — especially if you aresomeone who has been diagnosed withParkinson’s for several years and who re-sponds well to standard Parkinson’s med-ications. A DaTscan is most useful forpeople whose diagnosis is clinically uncer-tain or who have failed to respond well tocommon Parkinson’s medication ther-apy. If a person is unable to see a Parkin-son’s specialist or his or her clinical signsare not clearly those of PD, this is when aDaTscan may be deemed helpful.

Q: How can I get a DaTscan?Dr. Beck: PDF recommends that youspeak with your doctor to see if a DaTscanis right for you. If you are interested inlearning more, we suggest you visithttp://us.datscan.com/.

Q: Is the DaTscan test covered by insur-ance, Medicare and Medicaid?Dr. Beck: DaTscan will be covered byMedicare and Medicaid. Insurers are likelyto cover DaTscan but will policies vary, socontact your insurer for more information.

New Tool is Approved to Help with Diag-nosis of Parkinson’s

The US Food and Drug Administration(FDA), on January 17, approved the use ofDaTscan, a novel imaging technique thatcan be used to help diagnose Parkinson’sdisease (PD) in its early stages. The tech-nique, which combines the injection of aniodine-based radioactive chemical with animaging process (known as “SPECT”)that detects and measures the presenceof dopamine, has been used successfullyin Europe for more than a decade.

What is DaTscan and what does itmean for you? To find out, PDF News &Review recently posed some of yourquestions to our Director of Research Programs, James Beck, Ph.D.

Q: What is DaTscan?Dr. Beck: DaTscan is an imaging technol-ogy that uses small amounts of a radioac-tive drug to help determine how muchdopamine is available in a person’s brain.A machine similar to but smaller than anMRI machine, called a “single photonemission computed tomography ma-chine,” or SPECT scanner, measures the amount and location of the drug inthe brain.


www.pdf.org/science_newsWhat Does it Mean?

Wondering what the latest Parkinson’s head-lines mean for you?

Read PDF’s take on scientific studies by visitingour online science news.

DiagnosisParkinson’s disease:

You are not alone

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PARKINSON’S DISEASERESOURCE LIST

Joining a Clinical Trial

Understanding Parkinson’s

Living with Parkinson’s

Parkinson's Disease

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Diagnosis Parkinson’s disease:You are not alone

Do you want to know more about Parkinson's?

Order today from PDF's line offree print and video materials.

Call (800) 457-6676 or visitwww.pdf.org/publications

Health care professionals and support group leaders are encouraged to order multiple copies for their patients and members.



The Advocate Report: Sue Dubman of Massachusetts

What is one way to help accelerate the develop-ment of new therapies for Parkinson’s disease (PD)?As Robin Elliott, Executive Director of the Parkinson’s

Disease Foundation (PDF) notedin the last issue of this newsletter,it is through “pairing” peoplewith Parkinson’s — trained re-search advocates — with people ingovernment, science and industryto improve the process that bringsus new medicines.

Over the past few years inNews & Review, we have pro-

filed several of the 100 individuals from 36 states whocomprise PDF’s Parkinson’s Advocates in Research(PAIR) program. One welcome addition to this groupof research advocates is Sue Dubman, of Boston, MA.

For the first yearafter Ms. Dubman re-ceived her diagnosis ofParkinson’s in 2008,she said she “floateddown the river of ‘de-nial!’” Yet it did nottake her long to get involved with helpingthe Parkinson’s com-munity in a way thatpowerfully leveragesher 15 years of profes-sional experience in government, health, informationtechnology and clinical research. She works with or-ganizations such as the Clinical Data Standards Inter-change Consortium (CDSIC) on data standardization— that is, on finding ways to coordinate data collec-tion across research studies testing new therapies.

Ms. Dubman saw an opportunity when she readabout PDF’s three-day research advocacy training, theannual Clinical Research Learning Institute. As shedescribes it, “When I was at the National Cancer In-stitute, I worked with many patient advocates so I wasalready familiar with what they do and how impor-tant they are. As a person with Parkinson’s, I have a

vested interest in wanting to see treatments to stopprogression and improve quality of life for people liv-ing with Parkinson’s.”

She participated in the training in October 2010.Today, just five months into her new role as a Parkin-son’s research advocate, she has already found severalways to impact data standardization for Parkinson’s.She says that the problem is that Parkinson’s re-searchers often collect and label data in different ways.For instance, one study will define its young onset PDparticipants as people younger than age 40, and an-other will say they should be defined as everyoneunder age 50. Down the road, there is no way to com-pare and share information across studies because themeasurements are too different.

Ms. Dubman is also working to solve this problemthrough her service with the Coalition Against Major

Diseases (CAMD)-Critical Path Institute,a nonprofit institutewhich brings togetherindustry and govern-ment agencies to im-prove the developmentof new therapies bystreamlining data. Shehas also reviewed newdata standards createdby the National Insti-tute of Neurological

Disorders and Stroke (NINDS) — a branch of the Na-tional Institutes of Health (NIH) that funds PD re-search — and provided her expert feedback on behalfof PDF and the Parkinson’s community.

Why is this work important? As Ms. Dubmanputs it, “Data standards could speed up innovation, byallowing scientists to focus on the bigger picture ratherthan administrative details. We all want new treat-ments more quickly, and this is one way to improvethe process.” As she uses her combination of profes-sional expertise and personal dedication to the cause,so does she help increase the voice of people withParkinson’s — exactly the aim of PAIR.

Sue Dubman

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.

• If you are a person with PD who would like to learnmore about becoming part of PAIR…

• If would like to speak with PDF about partnering with a research advocate at your institution, clinical study or support group…

Then call us at (800) 457-6676; email us at [email protected];or visit us at www.pdf.org/pair.

Would You Like to PAIR Up for Parkinson’s Research?



PDF founder William Black with his wife, Page Morton Black.

The Parkinson’s Disease Founda-tion (PDF) is excited to announce anew partnership with Chock fullo’Nuts, maker of the well-known“heavenly coffee” and founder of therestaurant chain.

PDF and Chock full o’Nuts share acommon history, having both beenfounded by the late William Black (see thePDF/Chock story below). Now, the twoare joining forces to fight Parkinson’s dis-

ease (PD), beginning with nationwide promo-tions to raise awareness around the country about thedisease, the need to fund research for new treatmentsand a cure, and the availability of educational resourcesfrom PDF to help people manage their Parkinson’s.

This partnership will begin just in time for Parkin-son’s Awareness Month this April and it is coming to acommunity near you. Where should you look to find it?• Check your Sunday circulars on the weekend ofMarch 27 for a special coupon and advertisement pro-moting Parkinson’s Awareness Month.

• Check out the Chock full o’Nuts coffee cans in yourlocal grocery store. This spring, new cans will be fea-turing information about PDF’s mission to fightParkinson’s disease.

• If you live or work in New York City, or will be visitingthe city, you may notice Chock full o’Nuts trucks pro-moting the fight against Parkinson’s and distributingfree coffee. You may also visit Chock’s coffee shops,such as Chock 23 on West 23rd Street between Fifthand Sixth Avenues, to see cups and other items with in-formation inviting people to join the fight against PD.Robin Elliott, PDF’s Executive Director, said of the

partnership, “PDF has been singularly committed tofinding the cause(s) and a cure for Parkinson’s diseasesince that day back in 1957 when Mr. Black first foundout that his close friend and associate had developedParkinson’s, and realized to his amazement that therewere no effective treatments for the condition. We arecertain that Mr. Black would be happy to know that thetwo businesses he founded are now partnering to pushforward progress toward these goals and we thankChock full o’Nuts for its support.”

1926William Black opens his firstChock full o’Nuts Shop inNew York City. He eventu-ally opens more than 40shops and switches hisfocus from nuts to coffee,but keeps the original name.

1952-1961Mr. Black begins dis-tributing Chock fullo’Nuts brand of coffeein grocery stores.

1957Mr. Black’s controller andclose friend was diagnosedwith Parkinson’s. Mr. Black isappalled to learn that no trulyeffective therapy is available,nor is any basic research beingconducted on the disease.

1983Page Morton Black, Mr.Black’s widow and the well-known singer of the Chockfull o’Nuts jingle, becomesChairman of PDF.

2011PDF partners with the coffee company founded by Mr. Black to raise awareness of Parkinson’s. PDF continues to fund a majorresearch program at Columbia University and also supports re-search programs at Weill Cornell Medical Center, Rush UniversityMedical Center and the projects of individual investigators andfellows around the world, as well as runs print and online educational programs and research advocacy initiatives.

1957Mr. Black sets up PDF to es-tablish a research programaimed at finding an effectivedrug treatment for the dis-ease. He makes two majorgifts: one to Columbia Univer-sity to help build the researchlaboratory with a floor dedi-cated to Parkinson’s research;the other to endow PDF.

Chock full o‘Nuts Partners with PDF to Fight Parkinson’s

The Story of PDF, Chock and William BlackThe creation of PDF in 1957 by William Black, founder of Chock full o’Nuts, a successful New York coffee andrestaurant business, is in itself a story of support, good will and advocacy.


PDF NEWS


Advisory Council Member Raises $37,000 Nearly 200 music lovers and oth-

ers dedicated to the fight against Par -kinson's disease (PD) gathered for the8th Annual Music for Parkinson's con-cert on December 5, at Rye CountryDay School in Rye, NY. The event, or-ganized by Music for Parkinson's Re-search, raised $37,000 in net proceedsfor the research programs of the Par -kinson's Disease Foundation (PDF).

The afternoon featured perform-ances by several leading chambermusic artists including John Stine,Gena Raps and the Attacca Quartet.

After the concert, guests enjoyed awine and cheese reception and chattedwith the musicians.

Music for Parkinson's wasfounded by three individuals, led by

David Eger, Ph.D., who has workedwith PDF for many years, in largepart as an inaugural member of PDF'sPeople with Parkinson's AdvisoryCouncil, a group that advises thefoundation on its research, educationand advocacy programs.

Dr. Eger noted, “We were thrilledby the support from friends, family,community members and PDF staffand board members who came to-gether to help raise funds to find thecure for this disease.”

MPR Founder David Eger, PDF Executive Director Robin Elliott, PDF PPAC memberRhona Johnson

PDF is pleased to honor:

Herbert Pardes, M.D.President & Chief Executive

Officer of New York-PresbyterianHospital & New York-Presbyterian

Healthcare System

Tuesday, May 10, 2011The Pierre Hotel

New York, NY

This award will be presented at PDF’s annual gala, Bal du Printemps

Tribute to PDF PPAC-ersThe Parkinson’s Disease Founda-

tion (PDF) mourns the recent loss oftwo founding members of its People

with Parkinson’sAdvisory Council(PPAC), LillianSnyder, ofWheaton, IL andBruce Talbot, ofMoretown, VT.

PPAC was cre-ated to providePDF with perspec-

tives on research-funding priorities,community needs and ways to betterserve people living with Parkinson'sthrough education and advocacy pro-grams. Ms. Snyder and Mr. Talbotbegan their terms in 2006.

Ms. Snyder was diagnosed withParkinson’s in 1998. Among her vari-

ous contributions to PDF, she was anadvocate for educating others aboutthe disease. She wrote articles on howto explain Parkinson's to grandchil-dren and tips for moving to a newhome, and championed brain dona-tion. She was also a member of PDF’sCreativity and Parkinson’s Project andher painting, "The Birch Tree," wasfeatured in PDF’s 2010 wall calendar.

Mr. Talbot was diagnosed withParkinson’s in 1994. He was bestknown as the enthusiastic captain ofthe PDF Pacers, at the annual Parkin-son’s Unity Walk in New York. Dedi-cated to helping those living withParkinson’s navigate its challenges, hewas a contributor to the PDF newslet-ter, authoring, “Making a Move withParkinson’s,” in the Spring 2007 issue.

Mr. Talbot was one of the PPACmembers who lobbied PDF for the

creation of PDF’sfirst Resource List.He touched PDF’sstaff and board bycreating a “procla-mation” thankingPDF for being thefirst organizationto have an advi-sory board made

up of people affected by PD. Hisbook on his journey with chronic ill-ness, The Heart of the Matter, will bepublished posthumously.

PDF Executive Director Robin El-liott noted, “Lillian was a true andbeloved friend of PDF whose paintingsand words brought hope to others.Bruce is remembered for the kindness,enthusiasm and grace that inspiredeveryone around him. We will cer-tainly miss both of these dear friends.”

Bruce Talbot

Lillian Snyder

(800) 457-6676 | [email protected] | www.pdf.org

i n a c t i o n

Celebrate Spring

Date: Wednesday, April 6Place: 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 protected].

PD ExpertBriefing: What's in the PD Pipeline?

Date: Tuesday, April 12Time: 1:00 PM - 2:00 PM ET

Join PDF for this upcoming free interactive educational seminar.

Pre-register by calling (800) 457-6676, [email protected] or visiting www.pdf.org.

12

(800) 457 -6676 [email protected]

Main Office1359 Broadway, Suite 1509

New York, NY 10018P: (212) 923-4700F: (212) 923-4778

Columbia University Office710 West 168th Street

New York, NY 10032

PDF BOARD OF DIRECTORS

OfficersPage Morton Black, Chairman

Lewis P. Rowland, M.D., PresidentTimothy A. Pedley, M.D., Vice President

Stephen Ackerman, TreasurerIsobel Robins Konecky, Secretary

Stanley Fahn, M.D., Scientific DirectorDirectors

Constance Woodruff Atwell, Ph.D.Karen Elizabeth Burke, M.D., Ph.D.

Margo CatsimatidisBarbara Costikyan

Peter DornGeorge Pennington Egbert III

Stephen B. Flood, Esq.Sarah Belk GambrellDaniel Gersen, Esq.

Stephanie Goldman-PittelArlene LevineMarshall Loeb

Howard DeWitt MorganMarie D. Schwartz

Domna Stanton, Ph.D.Sandra Feagan Stern, Ed.D.

Melvin S. TaubMartin Tuchman

Executive DirectorRobin Anthony Elliott

Editor Christiana Evers

Managing Editor Melissa Barry

Scientific EditorBlair Ford, M.D.

Layout & DesignSharon Klein Graphic Design

SPRING 2011

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. Connect with PDF on:

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 researchin Parkinson’s disease, supporting the work of leading scientists throughout the world.

Calendar Events17th Annual Parkinson’s Unity WalkDate: Saturday, April 16Place: Central Park, New York, NY

Join the community for a one-mile walkto 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 IndividualDate: Tuesday, May 10Place: 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 protected].

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Parkinson’s Quilt Display

With the help of quilter Diane Durkee, block #17 of the Parkinson’s Quilt will be on display at the PeabodyTown 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, visitwww.pdf.org/quilt. For more information on this and other quilt displays around the US, visit www.pdf.org/event_calendar.

Monday, April 4 through Friday, April 8 Peabody, MA

Bal du Printemps Date: Tuesday, May 10

Place: The Pierre Hotel, New York, NY

Led by PDF Chairman, Page Morton Black, PDF’s annual gala, Bal du Printemps, is an elegant 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 [email protected].

Parkinson's Disease Foundation Spring Newsletter '11

Documents

Transcript of Parkinson's Disease Foundation Spring Newsletter '11