The American Parkinson DiseaseAssociation (APDA) reached a record highmark in Parkinson's disease (PD) researchsupport by awarding more than $3.3million in research grants, fellowships andsupport to Centers for Advanced Researchfor fiscal year 2006-07. A patient-supportbudget for the same period will be underconsideration at a future date.

Selecting recipients for APDA researchfunding is already a formidable task, butthis year's number of 149 applications andhigh quality of the proposals made it evenmore challenging for the 15 members ofthe APDA Scientific Advisory Board(SAB).

The APDA Executive Committee unani-mously voted to accept the SAB's recom-mendations. Included in the 2006-07budget are two additional Centers forAdvanced Research, two two-year RogerDuvoisin, MD grants, 12 post-doctoralfellowships, and 34 research grants.Funding for the 3, three-year George C.Cotzias, MD fellowships, awarded in prioryears, will be continued (see pg. 8 and 9).

The University of Alabama atBirmingham and the University ofPittsburgh were selected to becomeCenters for Advanced Research, joiningEmory University School of Medicine,Atlanta: UMDNJ-Robert Wood JohnsonMedical School, New Brunswick; BostonUniversity School of Medicine, Boston;University of Virginia Medical Center,

Charlottesville, UCLA School ofMedicine, Los Angeles, and WashingtonUniversity Medical Center, St. Louis.

As part of the research support package,the Executive Committee also unani-mously voted to recognize G. FrederickWooten, MD, chair of the SAB, with the2006 Fred Springer Award for hisleadership of APDA's research program.

President's note: During this year's SABmeeting to evaluate the research proposals, aroundtable discussion revealed the concern ofresearch leaders in attracting young physi-cians and scientists to the vital area ofresearch. With hundreds of thousands ofdollars in education loans to be addressed,fewer and fewer of the potential leadersneeded for scientific breakthroughs can affordto enter a field where their work is dependentupon an ever shrinking source of funding.

With this financial phenomenon posing areal and significant threat, not only to ourmission, but also to the overall field ofmedical research, the APDA ExecutiveCommittee voted to increase the researchfunding by an additional $500,000 in orderto fund all the applications that hadattainted the score recommended forapproval. Added to an original $300,000increased budget, APDA increased this year'sscientific research funding by $800,000bringing its 2006-07 contribution toresearch to a record $3.3 million. -VincentN. Gattullo

The American Parkinson Disease Association

A Quarterly Newsletter ©2006by The American ParkinsonDisease Association, Inc.

Paul Maestrone, DVM,Director of Scientific and Medical Affairs, Editor

Vincent N. GattulloPresident

Joel GerstelExecutive Director

INDEXResearch Funding atRecord High P. 1

President’s Message P. 2

Zelapar Approved for Use in Parkinson’s Disease P. 2

Clinical Trials and PD P. 3

Q&A P. 4

F.Y.I. P. 5-7

APDA Research Funding forFiscal Year 2006-2007 P. 8-9

Exelon Approved to TreatParkinson’s Disease P. 10

Stalevo’s Evaluation inEarly Parkinson’s Disease P. 10

APDA Seed Money forResearch P. 11

Air Travel Suggestions P. 11

Information onParkinson’s Disease P. 12

Main Office:135 Parkinson AvenueStaten Island, NY 103051-800-223-2732www.apdaparkinson.orgapda@apdaparkinson.org

West Coast Office:10850 Wilshire Blvd.Los Angeles, CA 900241-800-908-2732

S U M M E R 2 0 0 6 N E W S L E T T E R

1

Research Funding at Record HighBy Paul Maestrone, DVM

Director of Scientific and Medical Affairs

In years past Vermont conjured up thoughts of maple syrup and cheddar cheese. Then I re-cently learned about APDA's Vermont Chapter's Rock-a-thon. One hundred rocking chairsare set out on the lawn of the capital building in Montpelier, and thousands of dollars are

raised for Parkinson's research by participants rocking away. Now, that is my kind of fund-rais-er! So on the first weekend in June, I set my car's compass north anticipating a sun-filled, fun-filled weekend. It proved fun-filled, but also rain-filled. Torrential downpours continuedthroughout the day, relentlessly soaking chairs and people, causing balloons to droop, and cre-ating interruptions in electrical service to microphones.

My anticipated crisp spring New England day was not to be, but there was a greater joy.I was in awe as I watched these wonderful people who would not be deterred: • persons with Parkinson's who led a Kazoo Band Parade down State Street to the

capital, water running down their faces but not interfering with their music;• volunteers making coffee and handing out cookies under the tent to which all the chairs

had to be moved; • participants rocking away as much to keep warm as to raise funds.

Chapter members were out in full force, the Information & Referral Center's medical di-rector joined the rockers after his hospital duties, and the coordinator served as MC, keepingspirits up, announcing prizes and even doing a mean twist to the music of a volunteer DJ.

As I reflected during the drive home, at first I felt so sorry for those who worked so hard forwhat they hoped would be a perfectevent. Then I came to realize that theyhad an even more successful event be-cause they overcame the obstacle thatevery outdoor event planner fears. Itwas a perfect example of how peoplewith PD live every day - turning an im-perfect situation into a successful life.Adjusting to a disease they cannot es-cape, they find the fortitude andstrength to live as fully as possible, withdetermination and a sense of humor. I thought of the favorite saying of a

former track coach: the glory of a success is in direct proportion to the adversity overcome inachieving it. June 3, 2006 was a glorious day in Montpelier, where the APDA chapter demonstrated whatevery individual Parkinson's disease patient and his/her caregiver do every day: they made theirown sunshine.

Vincent N. Gattullo President

P R E S I D E N T ’ S M E S S A G EZelapar Approved ForUse In Parkinson's

Disease

On June 15, 2006 the Foodand Drug Administration ap-proved Zelapar® (selegilineHCI) orally disintegratingtablets, a once-daily adjuncttherapy for Parkinson's diseasepatients being treated with lev-odopa/carbidopa who show de-terioration in the quality oftheir response to this therapy.

Zelapar, a monoamine oxi-dase-B (MAO-B) inhibitor, is thefirst Parkinson's disease treat-ment to use a novel deliverysystem called Zydis® Technolo-gy, which allows the tablets todissolve within seconds in themouth and deliver more activedrug at a lower dose.

The use of Zelapar as adjunc-tive therapy to levodopa/car-bidopa has been shown to re-duce “off” time, on average, by2.2 hours per day. The mostcommon adverse reactionswere nausea, pain, insomnia,rhinitis and dyskinesia.

2

APDA President Vincent Gattullo and Vermont I&R Coordi-nator Jean Baker, RN, rocking in the Montpelier rain.

Educational Supplement # 21

HealthyAging

Educational supplement no. 21entitled,Dr. Andrew Weil's Recommendations for Healthy Aging

“I have Parkinson's disease so these don't apply to me, right?”WRONG!

Authored by Cynthia Holmes, Ph.D.,was added to the educational material distributed by APDA.

You can contact the APDA national office or one of the APDA I&RCenters for your copy.

Iattended a conference recently atwhich a very distinguishedAlzheimer's disease researcher was

bemoaning the lack of interest on thepart of Alzheimer disease (AD) pa-tients to volunteer in clinical trials.

Some large trials testing newdrugs to slow down the disease pro-gression were going much slower thanexpected. He had suggested that thelarge AD patient advocacy groupspartner with the drug companies andthe government agencies sponsoringthe clinical trials to advertise on tele-vision. The goal would be to get thepublic to understand why we needpatients to volunteer for these studies.When I told my colleague that we inthe PD research community werehaving the same problem, he told methat the AD plan was to also get thePD organizations to help in the effortto recruit patients with all the diseasesbeing studied.

No research, no advances. Nopatients volunteering for researchprotocols, no new drugs. It's as simpleas that.

You can make a difference inour fight against PD.

There are three ways in whichyou can fight PD: 1) You can lobby congress to providemore funds for research. Write a letterto your congressional representatives. 2) You can raise money yourself. 3) You can participate in clinical re-search projects by being a subject ifyou have PD, or a control (non-PDperson who is used for a comparisongroup). Ask your doctor or do a websearch to see if there's a project foryou.

It has been my observationthat patients are increasingly reluctantto participate in clinical research. “Idon't want to be a guinea pig.” “I

don't want to take another pill.” “I'mafraid of side effects.” “What if I getthe placebo?” “It's too much effort.”“I'm too busy.” “I don't like doingthat sort of thing.” “I don't like seeingdoctors.”

Some patients are afraidthey'll get the active drug and someare afraid they'll get the placebo.

In studies trying to figure outwho volunteers for studies and whythey choose to participate, the answeris usually that people volunteer for al-truistic reasons. They want to helpothers. Many of the studies we do inPD will not produce results that willhelp the people participating, al-though some will. Sometimes the re-sults will take too long to obtain tohelp the people involved. Sometimesthey are performed to learn how thebrain works, rather than to fix a prob-lem.

Let me provide some back-ground. There are several differenttypes of research on PD. There is “ba-sic” research, which involves studieson animal or human brains. Bio-chemical pathways are explored.Drug and toxin effects are evaluated.Cell structures are examined. Stemcells are studied in test tubes or in an-imal brains. And you can help by rais-ing money or by offering your brainfor study once you are finished usingit.

Normal people can also offertheir brains for PD research so thatscientists can compare the PD brainchanges to the brains of people thesame age who do not have PD. Youcan contact your doctor and discusshow to arrange for a brain donationupon your death. While many peoplefind the idea of a brain donation up-setting, the truth is, if you don't re-move it it simply rots. The brain re-moval does not affect the appearance

of the body, including the face, in anyway. An open casket funeral is stillpossible.

Clinical research involvespeople. We may measure things, suchas tremor, memory, speech, etc andsimply see what happens over time,trying to make correlations, such as: ifyou have tremor early on is your PDgoing to progress slower or faster; ifyou have a voice problem are youmore likely to develop swallowing dif-ficulties? If you have slow reactiontimes are you more likely to get into acar accident? What PD features corre-late with fatigue; etc.?

Many clinical research proj-ects involve medication trials. Wemay be looking at the effect of an ex-perimental new drug on PD, perhapsto slow disease progression, possiblyto treat tremor, dyskinesia, hallucina-tions, gait freezing, or a million otherthings that can go wrong in PD.

The only way we learnwhether a treatment works is to try itand the only way to reliably test it isin a well designed trial, usually, al-though not always, involving a place-bo control group. A placebo controlgroup means that one group of thetrial, gets a placebo or dummy medi-cine. Patients and doctors are so oftenfooled by their great desire to see amedication be successful that in moststudies everyone gets better. It's likethe introduction to the radio show,Prairie Home Companion, in whichGarrison Keillor describes his town,Lake Wobegone, “…where all thechildren are above average.” In place-bo controlled trials we look for thedifference between the placebo effectand the active drug’s effect, since bothtreatments usually are helpful.

The problem in several stud-ies has been recruiting subjects. Peo-ple with advanced disease are more

CLINICAL TRIALS AND PDBy Joseph Friedman

Director, APDA I&R CenterKent Hospital, Warwick, RI

3cont. on page 12

4

What roledoes physicaltherapy playin the treatment ofParkinson'sdisease?

Parkinson'sdisease doesnot causem u s c l eparalysis. Itis veryimpor t an tto maintain

maximal strength in your legsas this improves balance andprevents falls. Parkinson'sdisease causes a gradual lossof balance and it is the fallingand the consequence offalling (fractures, headinjuries) which leads to mostof the physical disability. Thetherapy is usually initiated as2-3 times a week sessionsand then maintained as aonce a week session. Youcould also exercise tomaintain muscle strength asadvised by your physician.

My husband is52 yearsold andhas hadParkinson's

disease for 6 years. He getssevere right leg cramps atnight and sometimes duringthe day. His right foot turnsin and the big toe comes up.He is on Requip 1 mg andSinemet 25/100 three times aday. What can we do?

This ismost likelydue to awithdrawalof themedicationduring thenight but

“cramps” during the day canalso be misinterpreted asdyskinesia (writhing, twistingmovements). Theseproblems would best bealleviated by increasing theRequip dose and adding anight does of Requip, tryingto lower the Sinemet duringthe day and add Comtan toit, and perhaps also takingSinemet CR and a musclerelaxant like clonazepam atbedtime. An anticholinergiclike Artane or Cogentin mayalso help. Cramps during theday can sometimes be helpedby using an ankle/footorthotic, which suppliessupport to the foot.

I understandthat there aretwo newm e d i c i n e swhich will bea v a i l a b l esoon for Parkinson's

disease. What are they?

The twomedicat ionsare bothmonoamineo x i d a s einhibitors thatinhibit thebreakdown ofdopamine like

selegiline (Eldepryl) whichdissolves in the mouth andhas been available since 1989.The first is called Zelapar. Itis an orally absorbable formof selegiline which has afaster onset. The othermedicine is called Azilect(rasagiline). It is more potentthan selegiline and does notbreak down into ampheta-mines as does selegiline.Remember that all of theseMAO-inhibitors areirreversible inhibitors andthey do not wear off for 2-3months after discontinu-ation. They should be usedwith caution when takinganti-depressants and shouldbe stopped for at least a fewweeks before surgery. n

&Questions AnswersEnrico Fazzini, DO, PhDAssoc. Prof. Neurology New York University, New York, NY,University of Nevada, Las Vegas, NV,N.Y. Institute of Technology, Old Westbury, NY.

Q:A:

Q:

Q:A: A:

Materials concerning the research in the field of Parkinson’s disease, and answers to readers’ questions are solely for the information ofthe reader and should not be used for treatment purposes, but rather as a source for discussion with the patient’s health provider.

F.Y.I. is a guide to the efforts and successes of the hundreds of volunteers

and staff who work daily to help ease the burden and find a cure and formillions of persons with Parkinson’s andtheir caregivers across the United States.

SUMMER 2006 VOLUME XIII NO. VIFYI EDITOR: K.G. Whitford

During their lifetime, neither composer Joseph Meyer nor his wife Rosalyn was associated withAPDA. But one item in their will remains music to the ears all who benefit from their generosity.

Joseph Meyer was born in California in 1894, and at age 13 years old was sent to Paris for a year tostudy violin. After graduating from high school, he worked in a San Francisco café, served in thearmy during WWI and then worked in a mercantile business.

But in 1921 the showbiz bug bit and he abandoned the retail trade for New York City and Tin PanAlley.

His first success was in collaboration with lyricist Harry Ruby. “My Honey's Lovin' Arms” wasrecorded by Benny Goodman and Isham Jones. A year later, his work with lyricist Buddy De Sylvaproduced “California, Here I Come.” Thus began a 66-year-long career working with renowned lyri-cists such as Billy Rose, Irving Caesar and Ira Gershwin, and producing the scores for several Broad-way shows including the Ziegfeld Follies and New Faces, and songs that include “Crazy Rhythm” and“If You Knew Susie Like I Know Susie.”

The royalties of Mr. Meyer's music were bequeathed to APDA, and periodically checks ranging from$58 to $5,000 are received from the Songwriters Guild of America. To date, the legacy has broughtmore than $75,000 to help APDA meet its mission to “Ease the Burden - Find the Cure” for Parkin-son's disease.

The Meyers' decision to include APDA in their will is just one example of how estate planning anddelayed giving can continue to help others after death.

AND THE BEAT GOES ON

Dr. William Labunetz has beenAPDA's presence in Montana sincethe opening of its Great Falls I&RCenter in the mid-1980s and hasworked with four coordinators in ex-panding services for Parkinson's dis-

ease patients throughout the northwest ever since. The Mon-tana center also provides services for North Dakota andWyoming. This spring Dr. Labunetz retired after 39 years ofneurological practice.

Lydia Skoog, who has been the coordinator for the past sixyears, says his sense of humor is one thing she will miss. “Hewas always telling jokes at our symposia or support groupmeetings. One of his favorites was, 'If you are in a burning

building, follow a Parkinson's patient out; they can't walk wellsometimes, but they can run!'”

Dr. Labunetz is a relocated Easterner. He received his medialdegree from Jefferson University Medical College, Philadel-phia, and completed an internship at the former MisericordiaHospital, now Mercy Hospital, also in Philadelphia.

“I have learned a lot from him over the years. He is a goodteacher. Although he had a general neurology practice, he hada heart for the Parkinson's patient and went the extra stepmany time,” Lydia says adding, “ I wish him well and hope heis enjoying his retirement. Thanks, Dr. Labunetz.”

Everyone at APDA echoes her wishes.

TThhaannkkss,,Dr. Labunetz addressing theApril 2005 Awareness in the

Montana capitol.

Dr.Labunetz

5

APDA’s own art patron has had anoth-er Meet the Artist Gallery Show successat Robert Wood Johnson UniversityHospital. New Jersey coordinator Eliz-abeth Schaff began with a calendar fea-turing artwork by Parkinson’s patientsthree years ago, which led to stationery,which led to last year’s first exhibit inwhich mixed-media artists could par-ticipate. Five new artists joined thisyear’s show, and Elizabeth has also in-troduced an art class series, “Paintingwith Parkinson’s.”

Proclamations for Parkinson’s awarenessare still coming in. Massachusettschapter president Keith Ciccone, re-ceived documents from Gov. MittRomney, and William J. Phelan, Mayorof Quincy.

Congratulations to the “wet wonders ofVermont!” (See president’s message.)Leading the way to another successfulRock-a-thon were acting presidentMichael O’Connor, chapter coordina-tor, Nicky Cribb, I&R director, Dr.Robert Hamill, and coordinator JeanBaker, and stalwart volunteers BruceTalbot, Susan Werntgen, Shirley Ja-cobs, Judith Hebert and Cassie Blan-chard.

Coordinating the annual three-dayYoung Onset Parkinson’s Retreat forpatients and their families is challeng-ing enough; enter Mother Nature de-stroying the entire coast where it isheld makes it even more so. But that isexactly what coordinators CarlaCothran (Birmangham Alabama),Caryn Crenshaw (Nashville,Tennessee) and Brenda Allred (Vicks-burg, Mississippi) did, albeit with a

year’s hiatus to recoup from HurricaneKatrina, and relocate the venue fromOcean Springs, Miss. to Townsend,Tenn. The retreat included daily aquat-ic exercise, lectures by physicians in-cluding Vicksburg’s I&R director Dr.Lee Voulters, patient and caregiver en-counter groups, lots of family fun time,and concluded with a hillbilly hoe-down. Ken Stuck, credited with beingthe impetus behind the retreat fiveyears ago, was also this year’s star. Kenwas just able to move at the last retreat,but following deep brain stimulation,was singing and dancing with his newbride at this year’s!

Brenda is also busy working withMemorial Hospital in Gulfport, Mis-sissippi to raise PD awareness. An ini-tial meeting took place at the hospital,which will host monthly support groupmeetings.

What do you call a coordinator whogreatly expanded services throughouther state, made more than 50 presenta-tions reaching more than 1,500 people,helped raise $15,000 for research andmore than $17,000 in unrestrictedgrants, organized two public forumsand assisted in creating six new supportgroups? You call her Paulette Olsen,APDA’s Minnesota I&R coordinatorand a winner of Abbott NorthwesternHospital’s Employee RecognitionAward. Paulette has also helped devel-op materials on PD for the hospital’sblock nurse program and launched aprogram for newly diagnosed patientscalled “The Good Start Project.”

Jessica Hahn has two major symposiaplanned for the fall in Wisconsin:APDA’s Scientific Advisory Boardmember Dr. Erwin Montgomery, Jr.,will discuss the “Medical Managementof PD,” Sept. 23, at the Holiday InnHotel and Convention Center, StevensPoint; and another at the Health Sci-ences Learning Center, Madison, on Oct. 1.

The Iowa Chapter has discovered thatgolf can be fun … and rewarding. Ten-tatively calling its first greens fund-rais-er the Inaugural Parkinson’s InvitationGolf Tournament, the chapter raisedmore than $11,000, attracting 31teams and sponsors for all 18 holes atthe Beaver Creek Golf Club in Grimes,Iowa. “Those who didn’t play con-tributed prizes,” reports a very happypresident Barbara Moore, who notesthat this will become an annual event.

The artwork of Nancy Paschke, whowas diagnosed with PD at age 33 andhas dealt with its effects for more than30 years, will be featured at a Sept. 17exhibit, “The Art of Living withParkinson’s Disease”, in Northbrook,Illinois. APDA’s young on-set coordi-nator Susan Reese is encouraging peo-ple with Parkinson’s to join the eventbeing presented in partnership with theBernard Weinger Jewish CommunityCenter.

There was an Elvis spotting in Nebras-ka! It was when the chapter’s walk-a-thon June 4, during which more than300 participants (some canine) turnedout and raised more than $13,000 forresearch. The Country Kickers, anOmaha dance group, provided the en-tertainment…. including the king.

Little wonder that more than 400 peo-ple are expected at the “Power OverParkinson’s Conference,” in Phoenix,Ariz. on Nov. 11. Former U.S. attorneygeneral Janet Reno, and Dr. MicheleTagliati of Mount Sinai School ofMedicine, NYC, a leader in deep brainstimulation surgery, are scheduled tospeak. The full-day event at the DesertRidge Marriott will include continentalbreakfast, vendor displays, luncheonand time to socialize, in addition tolectures.

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6

7

Help APDA in the fight against Parkinson’s disease while making a beautifulvisible statement in your garden next spring.

A package of 25 breathtaking red tulips with a small white edge, the traditionalsymbol of hope for Parkinson’s disease, will arrive at your home directly from aproducer of Holland’s highest quality tulips in time for National Planting Day, Oct.15. The price per bag, $29.95, includes all shipping and handling charges.

The best part is that APDA will receive 40% of the price, excluding shippingcosts, for every package purchased. These bulbs make wonderful gifts and areappropriate for balcony and patio containers as well as gardens.

Clip the coupon below and mail it with a check payable to TulipWorld, Inc., orcompleted credit card information to: APDA, 135 Parkinson Ave., Staten Island, NY10305.Orders must be received by Sept. 15, 2006

Flower power for Parkinsonnoitanod %04

hcraeser DP ot

APDA’s annual coordinator’sconference was held inPhiladelphia, July 27-30. Morethan 75 attendees and 45 coordi-nators from across the UnitedStates heard scientific presenta-tions presented by two renownedneurology professors, LawrenceGolbe, MD, of UMDNJ RobertWood Johnson Medical School,New Brunswick, N.J., and JosephFriedman, MD, of BrownUniversity, Providence, R.I.;participated in case study reviewsand panel discussions addressingnew programs and “hot topics”,and renewed friendships andprofessional camaraderie.

Minneapolis, Minn. coordinator,Paulette Olsen; Jean Baker,Burlington, Vt. coordinator; andLydia Skoog of Great Falls, Mont.received the 2006 Salvatore A.Esposito Award during thefarewell dinner on Saturday nightin the Westin Hotel.

Congratulations were sent toMemphis, Tenn. coordinator GinaCici, who gave birth to SophiaMarie in April. Mary LouiseWeeks, who brought four-monthold Charlotte Louise all the wayfrom Atlanta, Ga., was givenwarm APDA congratulations inperson.

Coordinators’ Conference Held in Philadelphia APDA Adds Two New I&R CentersFour New Coordinators and a

New Medical Director

Phoenix, Ariz. and Shreveport, La. are homes ofthe newest APDA I&R Centers. Drs. PadmaMahant, and Johan Samata, are co-directing thePhoenix center, located at Banner GoodSamaritan Medical Center. Thomas Vivano isthe coordinator.

Rhonda Feldt, RN, has been named the coordi-nator in the newly opened Shreveport centerwith Dr. Richard Zweig serving as medicaldirector.

Shari Powell, RN, MPH, has been namedcoordinator of the Baltimore, MD, center whereKathy Pear has been serving as acting coordi-nator, and Martha Gardner, RN, MSN, is thenew coordinator at the Stanford, Calif. center.

Dr. Ernesto Garza had been appointed themedical director of APDA’s Albuquerque, N.M.I&R Center.

8

APDA RESEARCH FUNDING FOR FISCAL YEAR 2006-2007

James Greene, MD, PhD

Joseph M. Savitt, MD, PHD

Clemens Scherzer, MD

Centers for Advanced Research

Cotzias Fellowships

PostDoctoral Fellowships

Robert Wood Johnson Medical SchoolNew Brunswick, NJ

Washington University Medical CenterSt. Louis, MO

University of AlabamaBirmingham, AL

Emory University,Atlanta, GA

John Hopkins Hospital,Baltimore, MD

Brigham and Women’s Hospital, Boston, MA

Regulation of Energy Metabolism in Midbrain DopamineNeurons

Conditional GDNF Receptor Knockout Mice: Exploring the Role of GDNF in Dopaminergic Cell Development and Survival

Lipid Alpha-Synuclein Toxicity

James L. Roberts, MD, Ph.D.

Evan Y. Snyder, MD, PhD.

University of Texas Health Science Ctr.San Antonio, TX

The Burnham Institute, La Jolla, CA

Molecular and Cellular Mechanisms of Estrogen Midiated Neuroprotection of Mesencephalic Dopaminergic NeuronsHuman Neural Stem Cells for Dopamine Reconstitution.

Spontaneous Versus Directed Differentiation

Northwestern University,Evanston, IL

Washington University School of Medicine,St. Louis, MO

National Institutes of Health, Bethesda, MD

Washington University School of Medicine, St Louis, MO

The Buck Institute for Age Research,Novato, CA

The Scripps Research Institute,La Jolla, CA

Columbia University,New York, NY

Caritas St. Elizabeth’s Medical Center, Boston, MA

University of Pennsylvania, Philadelphia, PA

Cleveland Clinic Foundation,Cleveland, OH

Massachussetts General Hospital, Boston, MA

University of Alabama, Birmingham, AL

The Role of Neuronal Excitation in the Folding Properties of Alpha- Synuclein in Caenorhabditis Elegans

Parkinsonism and Manganese Toxicty in Patients with EndStage Liver Disease

Fatigue in De Novo and Advanced Parkinson’s Disease

Mechanisms of Chronic DBS Stimulation in Non-Human Primates

Mechanisms of Iron Chelation as a Novel Therapy for Parkinson’s Disease: Involvement of the HIF Pathway

Contribution of Chromosomal Anueploidy to DiseasePathology in Sporadic Parkinson’s Disease

RTP801 as a Negative Regulator of Akt in Parkinson’s Disease

Parkin Promotes Alpha-Synuclein and Beta-Amyloid Toxicityand Protects against Their Effects on Tau Pathology.

Axonal Transport and Synaptic Targeting of Normal andMutant Alpha-Synuclein

Effect of Cerebral Atrophy and White Matter Changes on Neuropsychological Outcome of Bilateral STN DBS for PD

The Role of EphaA4 in L-Dopa Induced Dyskinesia in aMouse Model of Parkinson’s Disease

Role of 14-3-3 Proteins in Alpha- Synuclein-induced Neurotoxicity

Emory University School of MedicineAtlanta, Ga

University of Virgina Medical CenterCharlottesville , VA

University of PittsburghPittsburgh , PA

Boston University School of MedicineBoston, MA

UCLA School of MedicineLos Angeles, CA

Marie Olivia Casanueva, Ph.D.

Susan Criswell,MD

Suk Yun Kang, MD

Morvarid Karimi, MD

Donna Lee, Ph.D.

Daniel Lightfoot, Ph.D.

Cristina Malagelada, Ph.D.

Charbel El Hajj Moussa, Ph.D..

Subhojit Roy, MD, Ph.D.

Jessica Smerz, Ph.D.

Danqing Xiao, Ph.D.

Talene Yacoubian, Ph.D.

Research Grants

Roger Duvoisin, MD Fellowship

Northwestern UniversityEvanston, IL

University of PittsburghPittsburgh, PA

Northwestern UniversityChicago, IL

Binghampton University, Binghampton, NY

Reed Neurological ResearchLos Angeles, CA

Buck Institute for Age Research,Novato, CA

Rajeshwar Awatramani, Ph.D.

Sarah Berman, MD, Ph.D.

Mark Bevan, Ph.D.

Christopher Bishop, Ph.D.

Yvette Bordelon, MD, Ph.D.

Shankar Chinta, Ph.D.

Uncovering Molecular Cascades Involved in Midbrain Dopaminergic Neuron Specification.

Mitochondrial Dynamics in Vulnerability and Protection ofAging in Parkinson’s Disease

Cellular Mechanisms Underlying the Therapeutic Benefit of High Fre-quency Stimulation of the Subthalamic Nucleus for Parkinson’s Disease

Dorsal Raphe Regulation of L- Dopa- Induced Dyskinesia

Intraneuronal Aggregate Labelling with Positron Emission Tomography in Pakinson’s Disease

Proteomic Analysis of Dopaminergic Mitochondrial Complex I FollowingChronic Rotenone Exposure: Implications for Parkinson’s Disease

9

Research GrantsGammon Earhart, Ph.D.

Thomas Eckert, MD

Emad Eskandar, MD

Sheila Fleming, Ph.D.

Robert Gross, MD, Ph.D.

Kari Hoyt, Ph.D.

Eric Huang, MD, Ph.D.

Syed Imam, Ph.D.

Toshihiro Kitamoto, Ph.D.

Andreas Kottman, Ph.D

Weidong Le, MD, Ph.D.

Rehana Leak, Ph.D.

Marie Legare, DVM, Ph.D

Changwei Liu. Ph.D.

Pamela McLean, Ph.D.

Gary Miller, Ph.D.

Brit Mollenhauer, MD

Darren Moore, Ph.D.

Chad Rienstra, Ph.D.

Jean Cristophe Rochet, Ph.D.

Neeta Roy, Ph.D.

Wanli Smith, MD, Ph.D.

Ronald Tjalkens, Ph.D.

Kala Venkiteswaran, Ph.D.

Mark Wilson, Ph.D.

Jianhua Zhang, Ph.D.

Wei Zhang, MD, Ph.D.

Zhuohua Zhang, Ph.D.

Washington University School of Medicine, St. Louis, MO

The Feinstein Institute, Manhasset, NY

Massachussets General HospitalBoston, MA

University of California, Los Angeles, CA

Emory University,Atlanta, GA

Ohio State University, Columbus, OH

University of California, Sans Francisco, CA

University of Texas Health Science,San Antonio, TX

University of Iowa, Iowa CIty, IA

Columbia University, New York, NY

Baylor College of Medicine, Houston, TX

University of Pittsburgh,Pittsburgh, PA

Colorado State University, Fort Collins, CO

University of Colorado HealthScience,Aurora, CO

Massachusetts General Hospital,Boston, MA

Emory University, Atlanta, GA

Brigham and women’s Hospital,Boston, MA

Johns Hopkins University, Baltimore, MD

University of Illinios, Champaign, IL

Purdue University, West Lafayette, IN

Weill Medical College of CornellUniversity, New York, NY

Johns Hopkins University,Baltimore, MD

Colorado State University,Fort Collins, CO

Penn State Hershey MEdical Center,Hershey, PA

University of Nebraska,Lincoln, NE

University of Alabama, Birmingham, AL

University of Texas, San Antonio, TX

Burnham Institute, La Jolla, CA

Can Dance Improve Functional Mobility in Parkinson’s Disease?

Imaging Assessment of Levodopa Washout in Parkinson’sDisease

Abnormal Subththalamic Activity in Parkinson’s Disease

Effects of Oxidative Stress in Genetic Mouse Models ofParkinsonism

Inhibiting Inhibitors of Nigrostriatal PathwayRegeneration with a Novel Lentiviral C3 Vector

Chronic Biguanide Exposure as a New Mouse Model of Parkinson’s Disease

Role of TGFB-HIPK2 Signaling in Protecting MPTP- InducedToxicity to Dopamine Neurons

Evaluation of Stress-Induced Tyrosine Kinase, C-Abl, as a NovelTherapeutic Target for Parkinson’s Disease

Identification of Novel Genes that Enhance or Suppress DopaminergicNeurodegeneration Using the Drosophila Forward Genetic Approach.

On the Function of Sonic Hedgehog Expressed byMesencephalicDoaminergic Neurons in the Adult Brain

Essential Role of Iron in Proteasome Inhibitor-Induced Nigral CellDegeneration and Protein Aggregation.

Preconditioning-induced Neuroprotection in Models of Parkinson’s Disease

Effects of DJ-1 Mutation on Astroglial Cellular Function

Biochemical Studying of a Vicious Cycle of Toxicity between the lossof Proteasome Activity and the Alpha-Synuclein Aggregation.

Studies of Alpha-Synuclein Dimerization using Bimolecular Flourescence Complementation

A Novel Model of Parkinson’s Disease Based upon Altered Vesicular Storage of Dopamine

Evaluation of Cerebrospinal Fluid Alpha-Synuclein as aBiomarker for Synucleinopathies

Generation and Characterization of LRRK2 Conditional Transgenic Mice as a Novel Model of Parkinson’s Disease.

Structural Studies of Membrane Bound Alpha-Synuclein by 3D SolidState NMR

Alpha-Synuclein Toxicity in Parkinson’s Disease: Role of ER Stess

Transplantation of Neurogenin-2 Defined Dopaminergic ProgenitorsIsolated from Human Embryonic Stem Cells in Animal Model of PD

MAPK Signaling and Mutant LRRK-2 Induced Cell Death

Targeting Glia in Parkinson’s Disease: Modulation of AstrocyteInflammatory Phenotype by Orphan Nuclear ReceptorsDopaminergic Properties of Modified Human Retinal

Pigment Epithelial Cells

The Mechanism of Redox Regulation of the ParkinsonismAssociated Protein DJ-1

Lysosomal Dysfunction-Induced Cell Death andParkinson’s Disease

The role of Attractin and Mahogunin in Parkinson’sDisease

Pathogenic PINK 1 Mutants in Drosophila

APDA RESEARCH FUNDING FOR FISCAL YEAR 2006-2007(continued from page 8)

Novartis is now enrollingpatients in FIRST STEP, animportant Parkinson'sdisease (PD) study to inves-tigate if Stalevo®, (which,contain carbidopa,levodopa and entacapone),provides greater sympto-matic benefit in comparisonto the standard formulationof carbidopa at the samelevodopa dosage level, whenused as the initial therapyin early Parkinson's disease.

Stalevo tablets arecurrently indicated for PDpatients with signs andsymptoms of end-of-dosewearing off. Wearing offoccurs when the effect ofone dose of levodopamedication does not last aslong as it used to.“So far, the clinical use ofStalevo has focused onParkinson's disease patientswith end-of-dose wearingoff,” said Robert A. Hauser,M.D., M.B.A., director ofthe Parkinson's Disease andMovement DisordersCenter of the University ofSouth Florida in Tampa.“However, if Stalevo, asinitial levodopa therapy,provides better sympto-matic benefit than thestandard formulation ofcarbidopa/ levodopa, thesefindings could haveimportant clinical implica-tions for the treatment ofearly Parkinson's diseasepatients.”The 39-week multi-national, multi-center,randomized, double-blind

controlled study will enrollapproximately 424 patientsin 53 study centers inNorth America and Europe.Patient recruitment beganin August 2005 and isestimated to continue for12 months. The first studyresults are expected in2007.

Patients with Parkinson'sdisease, between 30 and 80years of age, who have beendiagnosed with idiopathicParkinson's disease withinthe last five years andrequire initiation oflevodopa therapy, will berandomized into the study.Investigators will assesspatients' ability to performactivities of daily living andpatients' motor functionabilities using the UnifiedParkinson's Disease RatingScale (UPDRS PartsII&III). FIRST STEP ispart of a major researchinitiative to better under-stand the potential ofStalevo in the treatment ofParkinson's disease.

Another study, STRIDE-PD, is ongoing in collabo-ration with Orion Pharma,Finland, and involves 740patients at 70 centers. It isthe first long-term,prospective, double-blind,controlled, multi-centerParkinson's disease studyinvestigating whetherStalevo can delay the onsetof dyskinesias in patients,compared to those takingonly levodopa withcarbidopa.

STALEVO’S EVALUATIONIN EARLY PARKINSON’S

DISEASE

The risk of developing dementia isapproximately four to six times higheramong Parkinson's patients than amongelderly people without the disease.

The Food and Drug Administration(FDA) has recently approved Exelon

®

(rivastigmine tartrate) for the treatment ofmild to moderate Parkinson’s Disease(PD) dementia, making Exelon the firstmedication available for the treatment ofthis condition. Exelon is also approvedfor treatment of mild to moderateAlzheimer's disease.

The approval of Exelon for the treatmentof PD dementia follows a unanimousrecommendation in favor of approvalfrom the FDA's Peripheral and CentralNervous System Drugs AdvisoryCommittee on May 17, 2006, based onresults from the Exelon in Parkinson'sdisease dementia study EXPRESS.EXPRESS is the first large-scale,randomized, double blind, placebo-controlled, multicenter study with anAlzheimer's disease medication to demon-strate statistically significant improvementin the treatment of symptoms of PDdementia.

EXELON®

APPROVEDTO TREAT

PARKINSON’SDISEASE

10

11

There have been recent reports of Parkinson's disease (PD) symptoms being misinterpreted by security people, resulting in an extreme case inCanada in the incarceration of a patient visiting from another country and his expulsion.

•Anxiety and stress can increase PD symptomsso make sure to give yourself lots of extra time.•Remember to dress casually and wear gar-ments that are easy to remove because you of-ten have to remove jackets, shoes, and belts togo through security.•Travel as lightly as possible. If you want cof-fee and a snack, it is best to pick it up afteryou've made it through security so you don'thave it tying up your hands.•Make arrangements with your airline directlyif you are going to need assistance, or if youwill need special clearance to allow medicalequipment or services to go beyond the secu-rity checkpoint, to assist you with boarding ordeplaning.

•When making reservations for a hotel andground transportation, ask for special accom-modations you may require and confirm thearrangements 24 hours prior to departure.•Before traveling to the airport, check yourairport's Website for current parking, groundtransportation, and traffic information.•Most airline have SkyCaps who can assist youwith curbside check-in and arrange for pas-senger assistance between the curb, ticketcounter, boarding area and plane.•When checking in at the ticket counter, letthem know you have PD and that it can slowyou down. If your gate is distant and you arenot up to the walk, request assistance from theticket agent.

•Always put medications in your carry-on lug-gage. You never know if your checked bag-gage will meet you at your final destination,and when!•Carry a list of your medications with theirchemical and trade names and dosages, it mayfacilitate refills in a foreign country if so need-ed.•Carry a card that says you have Parkinson's.It is available thru APDA national office orI&R Centers and says who your emergencycontact person is, and any allergies you mighthave.•If you are going to be changing time zonesduring your travels, speak with your doctor be-forehand to plan your medication adjustments.

Note: This article was adapted from the APDA Boston I&R Center Spring 2006 Newsletter.

Anyone who ever tried to raisefunds knows that it is not an easy taskon any level.

In the world of scientific research,however, the ability to obtain the dol-lars needed to test, retest and proceedto the next level of testing, takes just asmuch talent and tenacity as conceivingthe original hypothesis and plan ofstudy.

The federal government is the lead-ing and most prestigious funder of sci-entific and medical research in theUnites States. Monies are awarded bythe National Institutes of Health(NIH), in Bethesda, Maryland, whichprovides billions of dollars every yearfor research. During fiscal year 2003NIH provided close to $11 billion tomedical schools in the United States,and its National Institute for Neuro-logical Disorders and Stroke, which isthe major funder for Parkinson's dis-ease research, had a billion dollar budg-et for the same year.

While the amount of money the gov-ernment spends on health and researchseems staggering, the cost for researchis equally staggering and the process toqualify for those dollars is complicatedand very competitive. That is whywhen the APDA funded research proj-ect of Dr. Bari Hoffman-Ruddy's2002-2003 study, “Respiratory MuscleTraining in Individuals with Parkin-son's Disease” was awarded an NIHgrant last year, it was considered a ma-jor achievement toward the next stepof this highly innovative research.

The original APDA-funded studyinvolved more than 30 people withPD. It employed the use of an expira-tory pressure threshold device to testthe outcome of its use for training andstrengthening respiratory muscles toincrease expiratory force. The initialfindings showed that the program pos-itively impacted respiratory and laryn-geal dysfunction associated with PD.The grant work under the APDA

funding was just a pilot trial and therewas no control of other factors like the severity of the PD.

Christine Sapienza, Ph.D., Dr.Hoffman-Ruddy's associate and theprinciple investigator on the NIH ap-plication, wrote that “The fundingprovided by the APDA enabled us tocollect substantive preliminary dataand led to the successful applicationand funding for continued work in pa-tients with PD.” The investigatorshave acquired other grants to study theeffects of the training program on mul-tiple respiratory physiologic functions.These grants are now approximately $1million.

It is very rewarding when the fundsawarded by APDA not only enabledthe support for the initial basic re-search, but also represented the seedmoney responsible for a much greaterfunding of a procedure that will helppeople with Parkinson's disease.

APDA Seed Money for Research

AIR TRAVEL SUGGESTIONS

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Information on Parkinson’s DiseaseSingle copies of the following publications may be obtained free of charge by writ-ing to the national APDA office or by calling the toll-free number 1-800-223-2732 or faxing to 1-718-981-4399.

EDUCATIONAL BOOKLETS1. Basic Information about Parkinson’s Disease

4-page brochure (English, Chinese, Spanish)2. Parkinson’s Disease Handbook

Symptoms, causes, treatment; 40-page booklet (English, German, Italian, Portuguese, Spanish, Russian)

3. PD “n” Me — Coping with Parkinson’s disease;70-page booklet (English)

4. Be Active — A suggested exercise program for people with Parkinson’s disease; 25-page booklet (English, German, ltalian)

5. Be Independent — Equipment and suggestions for daily living activities; 32-page booklet (English, German, Italian, Spanish)

6. Speaking Effectively — Speech and swallowing problems in Parkinson’s disease, 34-page booklet (English, Japanese)

7. Good Nutrition20-page booklet (English), new edition

8. Young Parkinson’s Handbook78-page booklet (English)

9. How to Start a Parkinson’s Disease Support Group24-page booklet (English, Italian)

10. Aquatic Exercise for Parkinson’s Disease20-page booklet for patients and their families (English)

11. Next Step After your Diagnosis — Finding Information and Support23-page booklet (English)

12. My Mommy Has PD... But It’s Okay!20-page booklet for young children.

EDUCATIONAL SUPPLEMENTSCaring for the Caregiver: Body, Mind and Spirit; The Family Unit; The FineArt of “Recreating & Socialization” with PD; Medical Management of PD;Vision Problems and PD; Mirapex® in the Treatment of PD; Fatigue inParkinson’s Disease, Healthy Aging, and others.

DVDManaging Parkinson’s — Straight Talk and Honest Hope.Created by the Washington State Chapter of APDA especially for newly diag-nosed Parkinson’s patients and their loved ones. Leading experts explain what PDis and how it is treated, how to deal with symptoms of the disease and some of themedications’ side-effects and how to keep a positive outlook in dealing with it.

APDA WORLDWIDE WEB SITEwww.apdaparkinson.org for PD I&R Centers, Chapters, Support Groups,Education and Information Material, Meeting Dates, Publications, MedicalAbstracts, Clinical Trials, etc.

WORLD PARKINSON DISEASE ASSOCIATION WEB SITEwww.wpda.org/ A weekly-updated source of world news.

interested in research than milder patients,probably because the milder ones don't wantto face the future and hope against hope thatthey don't “need” anything new.

Too many patients don't fully appreci-ate the fact that every pill they take for PD wasthe result of PD patients decades ago volun-teering to be in experimental trials. They haveno idea of the number of people who havebeen in trials that didn't work or trials inwhich the drug had a side effect. Some trialsare stopped because the drug company decid-ed that the new medication was not any betterthan the ones already available, or trials inwhich one company merged with another thathad a competing drug more advanced in test-ing. Usually trials are stopped for good reason.Sometimes not. We researchers can't alwayscontrol this.

Good research relies on good investi-gators and volunteer subjects. There are manyattributes that we researchers share. Perhapsthe most important is concern for our patients'safety. Safety is always our number one con-cern.

While we can never provide completeassurance that nothing bad will happen whena person enrolls in a trial, we certainly do ourbest to make sure that nothing bad happens. Ican guarantee though, with 100 percent cer-tainty, that nothing good will happen if peopledon't sign up for the research studies.Some useful Websites for information aboutclinical trials in Parkinson's disease are:www.pdtrials.org This site includes up-to-date information on PD clinical trials current-ly enrolling participants in the United States.www.ninds.nih.gov This site includes infor-mation on research conducted by the Nation-al Institute of Neurological Disorders andStroke.www.parkinson-study-group.org The Parkin-son Study Group (PSG) is a non-profit, coop-erative group of Parkinson disease experts frommedical centers in the US and Canada partici-pating in clinical research.www.apdaparkinson.org Visit our website forinformation to locate your nearest APDA In-formation and Referral Center. Coordinatorswill assist you in identifying clinical trials on-going in your area.

Clinical Trials and PD cont. from page 3

THE PRINTING AND DISTRIBUTION OF THIS NEWSLETTER WAS PARTIALLY SUPPORTED BY A GRANT FROM GLAXOSMITHKLINE.12