When I was seven years old,I started having “fainting

spells.” They were relativelyinfrequent, and every time mymom took me tothe doctor, theywould check myheart and say Iwas fine.

In middleschool, I startedhaving occasional badheadaches, andwhen I was 17,I had my firstdiagnosedseizure. The neurologist wesaw that daythought it waslikely that my past “faintingspells” had in fact been seizures.

On the day before my 18th

birthday, we discovered that I had an abnormal mass in myright temporal lobe. By thispoint, I was having multiplecomplex partial seizures a day.After testing ruled out an AVM,my doctors were pretty confidentthat this abnormal mass was abrain tumor but that it was likely non-malignant.

Testing confirmed that myseizures were localized to myright temporal lobe and that I

800.770 .8287 www.tbts.org

Mapping Genes

Heads UpSummer 2006 Vol. 17, No. 3

Brain Tumor Society 124 Watertown Street, Suite 3H Watertown, MA 02472-2500

Heads Up

Brain Tumor Society 124 Watertown Street, Suite 3H Watertown, MA 02472-2500

800.770 .8287 www.tbts.org

Kristen Leclaire, continued on page 5

was a candidate for surgery. Iwas planning to start my firstyear of college in a fewmonths, so at that time brain

surgery wasnot something I was reallyready to do. I was adamantthat, despitethis recentdiagnosis, I could still go to college as planned.During my firstyear, I continuedto have multiplecomplex partial seizuresper day and

twice was taken to the ER afterhaving a generalized seizure.During breaks, I continuedtesting to determine that I couldsafely have surgery on my righttemporal lobe without affectingmy verbal memory.

My surgery was on May 28,2003 – three weeks after thelast final of my first year. Thesurgery lasted longer thanexpected because my tumorwas bigger than the doctorsanticipated. Before I was discharged, the pathology came

Survivor Kristen Leclaire (l) with anotherbrain tumor survivor, Marissa, at camp.

One young survivor gives back to others who are still coping

Inside This IssueOne-Day Seminar Series 4

Cassidy & Pinkard Race for Hope 6

Golf for Hope 7

Ride for Research 8

Stand Up For Life Gala 11

... and more

The old realestate adage

emphasizing theimportance of location is alsopoignant for braintumors. The exactlocation of a braintumor determines its impact on neurological function and the feasibility of surgical resection. The human brain is a highly organized structurecontaining a myriad of cell typesthat function in a complex network.This structure is assembled duringdevelopment through an elaboratechoreography of cell proliferation,migration and differentiation.

The blueprint that determines thearchitecture of the brain is in thegenome. Specific genes function inconcert to provide the molecularinstructions required for assemblyof the human brain. Understandingthe molecular and cellular processleading to normal brain growth is anecessary prelude to elucidating the

BGEM, continued on page 5

From patient to nurseLocation, location, location!

Tom Curran, PhD

HEADS UP is published four times a year by the Brain Tumor Society, a national nonprofitorganization committed to finding a cure forbrain tumors. The Brain Tumor Society is afounding member of the North American BrainTumor Coalition. Contact the Brain TumorSociety at 800.770.8287 or info@tbts.org or visitour website at www.tbts.org.

Dennis RothChair, Board of Directors

Scott L. Pomeroy, MD, PhDChair, Medical Advisory Board

Darell D. Bigner, MD, PhDChair, Scientific Advisory Council

G. Bonnie Feldman . . . . . . . . . . . . . . FounderNeal P. Levitan, Esq. . . . . . Executive Director

Dawn Grenier . . . . . . . . . . . Managing EditorJLM Marketing Group, Inc. . . . . . . . . Printing

The information herein is based on professional adviceand expert opinion and does not constitute therapeuticrecommendations. BTS recommends that you discussall medical questions with your physician. Further,BTS does not endorse products, services or manufacturers, nor does it assume liability for any product or service mentioned.

©2006 Brain Tumor Society. All rights reserved.

MISSIONThe BRAIN TUMOR SOCIETY exists

to find a cure for brain tumors.

We improve the quality of life of brain tumorpatients, survivors and their families by

providing access to psychosocial support,information and resources.

We raise funds to enhance treatments and to find a cure.

VISIONA world without brain tumors.

Brain Tumor Society 800.770.TBTS (8287) Summer 2006 Vol. 17, No. 3, page 2Brain Tumor Society 800.770.TBTS (8287) Summer 2006 Vol. 17, No. 3, page 2

The 4th edition of our ColorMe Hope Resource Guidefor patients and families is astarting resource for those facing a brain tumor diagnosis.

Our Annual Report 2005provides an overview of ourservices and research, alongwith a financial synopsis ofthe Brain Tumor Society.

Contact us at 800.770.8287 or info@tbts.org for these free publications.

This is a very exciting time for braintumor research! This year, I have

attended a lot of brain tumor conferences,and I see an encouraging trend that willcontinue to affect all of us in a very positive way. All of the research that issupported by the Brain Tumor Society,

along with work done by the National Cancer Instituteand pharmaceutical companies, really improves treatments, and these findings are helping to fight braintumors in less damaging ways.

Today, there are more drugs and plant-based therapiesbeing studied for brain tumors and cancers than everbefore and standards of treatment for newly-diagnosedpatients are being updated as treatments are refined.Today, we see new combinations of drugs being used for the first time. We have targeted therapies that can killtumor cells without hurting healthy brain cells, giving usa way to attack tumors more specifically than by usingonly chemotherapy and radiation. I’m extremely positiveabout these new breakthroughs.

Although brain tumors are considered relatively rare,we also benefit from ongoing research for other tumorsand cancers. Genetic and molecular approaches oftenapply to more than one type of tumor. For example, amelanoma drug that targets a certain protein, epidermalgrowth factor receptor (EGFR), may be useful to braintumor research, since EGFR also appears at high levels in many brain tumors. Other research is similarlyhopeful.

We are your “hunters of information.” Your support is essential as we continue to try our hardest to fund thebest current research, as efficiently and effectively aspossible.

Letter from the Chair of the Board

Dennis Roth

Dennis Roth, Chair of Board of Directors

The presentation of the 2006 Research GrantAwards takes place October 23rd, near Boston.See the back cover for more about the Annual Meeting.

Brain Tumor Society 800.770.TBTS (8287) Summer 2006 Vol. 17, No. 3, page 3Brain Tumor Society 800.770.TBTS (8287) Summer 2006 Vol. 17, No. 3, page 3

BTS Announces Collaborative GrantsFunding supports cooperation between researchers

The Brain Tumor Society and its seven philanthropic partners in the Brain Tumor Funders’ Collaborative (BTFC) announced their

inaugural grant awards in March. The first BTFC joint funding initiativeawarded three grants of $2 million each to promote translation of scientific discoveries into effective new treatments.

“The BTFC request for proposals required a novel concept with amulti-disciplinary and multi-institutional team of collaborativeresearchers and clinicians,” said BTS Executive Director Neal Levitan.“With an estimated incidence of 20,000 malignant brain tumors per year,and many of these patients facing a challenging prognosis, collaborativeresearch to accelerate clinical treatments is of utmost importance.”

The three funded projects were selected during a multi-stage review process from more than 60 proposals. Each project takes on acentral question in brain tumor research, including the potential role oftumor stem cells in brain cancer and the use of genetic profiling oftumors to subdivide clinical populations in order to better determineresponsiveness to targeted therapies.

BTFC seeks to support researchers’ efforts to translate promising basic science investigations into clinical research. The problems of treating brain tumors - because they are typically found in areas thataffect the center of thought, emotion and cognition as well as physicalfunction – are challenging and complicated.

“The BTFC and the Brain Tumor Society hope to change the outlookfor those with malignant gliomas, sooner rather than later,” Levitan said.Details about the projects listed below are available at www.tbts.org orwww.braintumorfunders.org.

Brain Tumor Funders’ Collaborative Grants 2006Tumor Stem Cell-Based Drug Discovery for Adult and Pediatric Glioma

Sponsoring Institution: Kennedy-Krieger Institute, Johns Hopkins University, Baltimore, Maryland

Project Manager: Dr. John LaterraMolecularly Guided Clinical Trials for Glioma

Sponsoring Institution: David Geffen School of Medicine at UCLAProgram Manager: Dr. Paul Mischel

Identifying and Overcoming Resistance Mechanisms in Glioblastomas: A Joint EORTC-RTOG Effort

Sponsoring Institution: American College of Radiology/Radiation Therapy Oncology GroupProject Manager: Dr. Minesh Mehta

BTFC Members: American Brain Tumor Association Brain TumourFoundation of Canada Brain Tumor Society Children’s Brain Tumor

Foundation Goldhirsh Foundation James S. McDonnell Foundation National Brain Tumor Foundation Sontag Foundation

ADVISOR NEWSThe Brain TumorSociety’sScientificAdvisoryCouncil welcomes new member Philip J. Tofilon, PhD. Until this spring, Dr. Tofilonwas Chief of the MolecularRadiation Therapeutics Branchat the National Cancer Institute.In May, he moved his lab to theH. Lee Moffitt Cancer Center &Research Institute in Tampa,Florida. Dr. Tofilon’s expertisein radiotherapy will benefit theScientific Advisory Council,which is currently reviewing the 2006 Research Grant applications. He is particularlyknown for his innovative workwith radiosensitization of centralnervous system tumor cells.

If Heads Up just doesn’t comeoften enough for you, we providemonthly e-news updates on braintumor news, BTS events acrossthe country, and current clinicaltrial opportunities for brain tumorpatients. Sign up for Head Lines!

Subscribe at www.tbts.orgNote: Due to changes in software, we have had some difficulties with the Head Lines subscription list. If youhave questions about your Head Linessubscription, email media@tbts.org.Thank you for your patience!

Head Lines

What is ototoxicity?The term ototoxicityrefers to inner eardamage directly

resulting from exposure to a toxin.It can present as permanent ortemporary hearing loss, tinnitus(ringing) or lightheadedness. Itsseverity and scope differ betweenindividuals.

Some cancer treatments havebeen linked with ototoxicity, suchas radiation to head and neck andplatinum-based chemotherapies(e.g. Cisplatin, Carboplatin andMechlorethamine).

When possible, patients andfamilies should discuss potentialside effects at the onset of treat-ment. Awareness, early detectionand information will improvemanagement. If ototoxicity is apotential concern, a baselineaudiogram (hearing test) can provide a standard of comparisonfor follow-up tests during treat-ment. Patients should notify theirtreatment team immediately if theynotice any changes in hearing.

Individuals who are diagnosedwith ototoxicity often identify aprofound impact on daily living.While there are currently no drug treatments for ototoxicity,minimizing noise, effectively managing stress, avoiding fatigue and staying hydrated areseveral possible countermeasuresfor hearing issues associated with ototoxicity.

Brain Tumor Society 800.770.TBTS (8287) Summer 2006 Vol. 17, No. 3, page 4Brain Tumor Society 800.770.TBTS (8287) Summer 2006 Vol. 17, No. 3, page 4

ASK THE EXPERTOne-Day Seminars Connect Patients,Survivors, Families with Local ExpertsSeries off to successful start in Boston and Philadelphia

The One-Day Seminar series,“Brain Tumors: Confronting

the Challenge Together,” kickedoff this spring. The March seminarwas presented in conjunction withthe Brigham’s Department ofNeurosurgery, and for the Juneseminar, BTS collaborated withthe University of Pennsylvania’sAbramson Cancer Center BrainTumor Program.

In both Boston and Philadelphia,the full day seminar addressedtopics for both adult and pediatricbrain tumors. Sessions coveredtreatment issues, survivorship andsupport skills, presented by spe-cialists from various treatmentcenters in the Boston andPhiladelphia areas.

“The level of presenters was superior and quite comprehensive,”commented one attendee.

“I very much appreciated thelow cost,” one participant noted inthe evaluation. “Great event!”

In Boston, over 150 patients,survivors and their caregiversattended. Lunch at each sessionprovided time for networking with

other patients and survivors fromeach region. Many guestsexchanged stories, suggestions andcontact information to keep intouch after their seminar. “Justwhat we needed!” exclaimed one.

Others were meeting in real lifefor the first time, though they’veknown each other for months oryears through online supportgroups and communities.

A unique feature of “BrainTumors: Confronting theChallenge Together” is the closingsession, which brings together adiverse group of presenters. Thispanel reviews a sample case toillustrate how a hospital’s braintumor board functions.

“I really appreciated the mockbrain tumor board,” an attendeenoted. “As a caregiver, I have hadquestions about what happens inthis type of meeting.”

The next One-Day Seminar isnow in the planning stages withThe Cleveland Clinic. In 2007,BTS will take the One-DaySeminar Series to more locations.Watch for details at www.tbts.org,under BTS Resources.

Fred Hochberg, MD at the Boston Seminar

One-Day attendees networked over lunch.

Sarah Gupta, LICSW is our supportexpert. Send your question to Sarah atgupta@tbts.org. Please rememberthat BTS cannot address your specificmedical condition.

Photos © Pierre C

hiha

mechanisms whereby brain tumorcells usurp these signals and itrepresents one of the greatest challenges facing the biomedicalcommunity. The first clue to gene function in the brain is information concerning where and when each gene is expressed.

Over the past several years, weadopted a new genomics approachto document the expression patternsof all genesexpressedduring mouse braindevelopment.We developeda highthroughput in situhybridizationapproach tolocate thepresence ofRNA molecules in specific regionsof the brain. We used sectionsfrom the developing and adultbrain for hybridization withmolecular probes. Recently, wepublished a brain gene expressionmap database for the researchcommunity. This work is part ofthe National Institute ofNeurological Disorders andStroke-funded GENSAT (braingene expression atlas) project and,like the human genome sequence,it is freely available for use by allinvestigators. The study appearedin the open access Public Libraryof Science Biology (PLoS Biology)journal that licenses all contents of

Brain Tumor Society 800.770.TBTS (8287) Summer 2006 Vol. 17, No. 3, page 5Brain Tumor Society 800.770.TBTS (8287) Summer 2006 Vol. 17, No. 3, page 5

back as a ganglioglioma, whichthe doctors considered to be “themost benign thing it could havebeen.” I have been very lucky inthat I have now been seizure-freeand tumor-free for three years.

The summer after my surgery, I started volunteering at camps forchildren with epilepsy or with cancer. I have met several childrenwith brain tumors who havetouched my life and helped me tomake sense of my own illness.

Today, I am a nursing studentwho hopes to work with familiesand children affected by epilepsyand brain tumors after graduation.Earlier this year, I saw the BrainTumor Society’s One-DaySeminar Series advertised atBrigham and Women’s Hospital,where I do my clinical study. NowI look forward to becoming evenmore involved with the BrainTumor Society!

Share Your StoryWe want to hear about your experience coping with a braintumor, whether as a currentpatient, a survivor or a caregiver.We’ll consider your story for our websiteor a future edition ofHeads Up.

Email your story to Dawn Grenierat grenier@tbts.org or send it to:

Brain Tumor Society124 Watertown Street, Suite 3H

Watertown, MA 02472-2500

BGEM, continued from page 1

Kristen Leclaire lives in Milford,Massachusetts, and attends BostonCollege. She participated in the Ridefor Research in May - even though shehadn’t biked in seven years!

Kristen Leclaire, continued from page 1the article in the CreativeCommons Attribution License.This means that scientists canbrowse the data, they can downloadany number of images to theirdesktop computers, and they canincorporate these files into grantsor manuscripts without restriction.They can even use the informationfor commercial work. Ultimately,our goal is to document the posi-tion of all genes that are expressed

in the brain (whichmeans at least halfof the genome andmaybe more) and toprovide access todata in a way that is both user-friendlyand integrated with the growingwealth of genebioinformatics. In the future, this may lead to a

virtual biology laboratory wherescientists can conduct experimentsin silico.

Although the database is not yetcomplete, currently it has aninventory of more than 2,800genes with up to 56 tissue sectionsof data on each. This informationhas already proven useful in braintumor research. In collaborationwith Richard Gilbertson, MD,PhD’s laboratory at St. Jude’s, wefound that the BGEM databasecan be used to interpret informa-tion from brain tumor gene chipstudies that helped pinpoint thecell of origin (published in 2005in Cancer Cell).

Tom Curran, PhD, is chair of the department of Developmental Neurobiology and co-leader of the Neurobiology and Brain Tumor Program at St. Jude Children’s ResearchHospital. In 2005, Dr. Curran was elected to the prestigious Fellowship of the RoyalSociety — the United Kingdom national academy of science — for his discoveries incancer biology and neurosciences.

StJudeBGEM.org provides researchers withdata and images for more than 2,800 genes.

Brain Tumor Society 800.770.TBTS (8287) Summer 2006 Vol. 17, No. 3, page 6Brain Tumor Society 800.770.TBTS (8287) Summer 2006 Vol. 17, No. 3, page 6

In its ninth year,the Cassidy &

Pinkard Race for Hope inWashington, DCbroke its already-remarkablerecords. Over6,000 runnersand walkers joined the scores of volunteers and other supporterswho came to Freedom Plaza onSunday, May 7. Over $1 millionhas already been raised, and contributions continue throughSeptember.

Volunteersbegan the dayearly, andFreedom Plazasteadily filled asindividuals andteam membersarrived. Withperfect weather,the day was offto a good start.Survivors of all ages picked uptheir special yellow shirts and totebags at the Survivor Tent. Minutesbefore the Race, they walked

Positively Inspirational!Washington DC 5K raises another $1 million

together, with yellow balloons inhand, to the startingline. Cheers ofencouragementcould be heard allthe way downPennsylvaniaAvenue as loved

ones paid tribute.Title sponsor Cassidy & Pinkard

led the fundraising; the Cassidy &Pinkard team raised over $50,000for the second year in a row. Thetop ten teams raised more than

$16,000 each, andthere were morethan 200 teamsrepresented at theRace for Hope.

This year’sRabbi Joseph P.Weinberg Triumphof the Spirit Awardwas presented bythe Weinberg fami-ly to a new team,

Soar for Sydney. Dozens of teammembers wore purple shirts inmemory of Sydney Schlobohm;her third-grade classmates and

teachers were among theteam members who raisedmore than $28,000.

The Wall of Hope was a powerful and touchingnew addition to the Race.Supporters filled a wallwith beautiful pictures,poems and notes in memory of loved ones or in celebration of thosebattling the disease.

Race for Hope photos ©

James O

esch

A new Race for Hope takesplace in Philadelphia

on November 5th.braintumorsociety.org

From left, Bob Pinkard, BTS Executive Director NealLevitan, Jonathan Weinberg, Race coordinator NicolaBeddow and BTS Board Member Barry Glassman.

Thanks to our Sponsors

Cassidy & PinkardWashington Hospital Center,

Neuroscience Institute, Medstar Health

Washington Brain & Spine Institute

Eagle BankMonumental Vending

Mix 107.3 WRQXWashingtonian

Glaceau Vitamin WaterWestland Enterprises, Inc.

Duron Paint & WallcoveringsGEICO

Schering-PloughPatricia Fitzpatrick,

Fitzpatrick Stellar AdvisorsMiller & Long Concrete

Tenacity GroupUrban Country

Friends4Michael.org

The runners at center wore their yellowsurvivors’ shirts for the Race. Here theycheer as they cross over the finish line.

Brain Tumor Society 800.770.TBTS (8287) Summer 2006 Vol. 17, No. 3, page 7Brain Tumor Society 800.770.TBTS (8287) Summer 2006 Vol. 17, No. 3, page 7

On the Friday before the Race for Hope, Golf for Hope was an evenbigger success than last year’s tournament, raising more than

$80,000! The morning and afternoon sessions were close to capacity,with 180 golfers putting for a cure. Rain was in the forecast, but theweather turned out to be perfect for golfing.

Over lunch and dinner, there wasa program of speakers and awards.Chris Peabody, one of the eventorganizers, introduced BTS BoardMember Barry Glassman, whoexpressed thanks to the participantsfor supporting the BTS vision of“A world without brain tumors.”

Brian Rood, MD, a pediatricneuro-oncologist at Children’sNational Medical Center, reminded

the golfers how important their contributions are to finding a cure. Thevast majority of cancer research funding is federal support through theNational Cancer Institute, a division of the National Institutes of Health,but these funds have steadily declined. “Last funding cycle, only 12 percent of research applications [to NCI] were funded,” Dr. Rood said.“Projections for the next round are even lower.” He emphasized that private funding granted by BTS and other organizations is essential tocontinuing current research and bringing new scientists into the field.

Prizes to the winning foursomes included dinners, gift baskets andgolf accessories from generous sponsors. The last-place foursome ineach session also won a prize - golf lessons!

SSppeecciiaall TThhaannkkssBlue Mash Golf Course

Bank of America

Vocus, Inc.

Friedman Billings andRamsey

Linowes and Blocher LLP

RSM McGladrey

Uncle Julio’s Rio Grande

Chris Braun

Chevy Chase Cars

Yamaha Golf CarSpecialties

McGuire Woods

Selective Insurance

ROCKLANDS Barbequeand Grilling Company

2nd Annual Golf for Hope

Golf for Hope was created by twofamilies who connected throughthe Race for Hope. This year, evenmore new events were organizedaround the Weekend for Hope -soon we may have to call it theWhole Week for Hope.

BoogieNightsOne Aprilnight inNew YorkCity,

Weekend for Hope Just Keeps GrowingEdmond van der Bijl held a “Boogie Nights” party that raised$3,000 for his sister, captain of theeponymous Team Sophia.

Happy Hours for BTSRobyn Brickel coordinated twohappy-hour fundraisers theweek before the Race - oneat Union Jack’s in Bethesda,the other at The Science Club in Washington, DC. These nightshelped Robyn’s team, Eggs AnyStyle, raise more than $4,000.

Rock for HopeMany Race teams throw after-parties to celebrate a successfulrun or walk. The Scatterbrains

(also known as BarbaraPurcell and Linda Morison)

took the idea a step further andorganized a party for all Race participants and friends at theArlington Cinema ‘N’ Drafthouse,which generously donated thefacility for the event. “Rock forHope” featured live music andfun for the entire afternoon!

Golf carts dotted the landscape at BlueMash. Unfortunately, no one made ahole-in-one to win the Acura at left!

Other Riders, volunteers andfriends stopped by to see thesurvivors’ photos and to createmessages of inspiration andremembrance for the Hands ofHope boards.

Morning radio personalityMatt Seigel of Boston’s Kiss108 FM introduced the closingceremonies. BTS ExecutiveDirector Neal Levitan thanked

all of the Ride participants andreminded those in attendance how essential their efforts are in

supporting the BTS mission ofresearch, educationand support. Rider and BTS office volunteer JaneNorris made theclosing remarks.Jane’s husband

passed away in March, and theDave’s Head team rode in hismemory, raising nearly $10,000.“It’s a bittersweet day,” Jane said.“The bitter is that Dave isn’t here.The sweet is that I am not alone,thanks to all of you.”

Brain Tumor Society 800.770.TBTS (8287) Summer 2006 Vol. 17, No. 3, page 8Brain Tumor Society 800.770.TBTS (8287) Summer 2006 Vol. 17, No. 3, page 8Photos ©

Pierre Chiha, except as noted

Another Record-Breaking Ride!Boston-area routes filled to capacity by Ride for Research

The 12th Annual Ride forResearch had moved to a

bigger and better main site.However, the number ofcyclists rose so sharply thisyear that - for the first time inthe history of the Ride - registration had to be closed at1,200 registered Riders - evenbefore Ride day arrived!

Thanks to Riders and VirtualRiders from 18 states, gifts arestill coming in, but the total isalready well over $1 million, forthe second year in a row.

Despite early-May rains andflooding in eastern Massachusetts,the weather on Sunday, May 21 was perfect.Dozens ofvolunteersprepared thesite for theRiders, whocycled 10,25 or 50milesthrough Boston’s western suburbs.The 10-mile route was new thisyear, and it proved a perfect fit for

Ride for Research Spirit Award

younger Riders and Riders whohadn’t been on a bike in a while!

While cyclists enjoyed the scenic routes, Liati’sKids’ Korner keptyounger participantsbusy at the main site,and the street teamfrom Boston’s Kiss108 FM provided the soundtrack. Awide range of area restaurants hadlunch waiting as the Ridersreturned.

Survivors of all ages stopped bythe Survivor Station to have theirphotos taken. The pictures weremounted on display boards.

Bike for Ike has riddenand staffed the Actonwater stop since 2000,in memory of IsoacHawkins. BTS BoardMember Rabbi DavidPaskin (l) presents theSpirit Award to Ike’ssister Shelly Tatro andwife Lucy Hawkins.Bike for Ike’s story wasin the spring Heads Up.

The Ride is to give. ... TheRide provides hope tofamily and friends ofloved ones lost, and toloved ones still fightingthe battle. We can nevergive up hope.

~ Nick Dion, Al’s PalsPhoto by Jack Sheehy

The cotton candy machine at Liati’s Kids’Korner was a big hit with kids and adults.

Brain Tumor Society 800.770.TBTS (8287) Summer 2006 Vol. 17, No. 3, page 9Brain Tumor Society 800.770.TBTS (8287) Summer 2006 Vol. 17, No. 3, page 9

Real Thanks to Virtual Riders!Virtual Riders made a huge difference this year in expanding the Rideand its fundraising. Dozens of Virtual Riders joined their families’ orfriends’ teams of cyclists, while others took the opportunity to createtheir own Ride fundraiser. Survivor Rory Petrilli organized a specialsailing event to coincide with the Ride for Research. Rory’s WestCoast Contingent team sailed in Puget Sound on May 21 to supportthe Brain Tumor Society. Virtual Riders raised more than $75,000toward the Ride for Research!

THANKS TO OURSPONSORS

Charlesbank CapitalPartners LLC

Pro Media, Inc.

Roche Bros.

Ski Market

VerizonBalloons Galore

Bertucci’sBJ's Wholesale

Bristol-Myers SquibbCommunity Newspapers

CVS/pharmacyDunkin’ Donuts

Fidelity InvestmentsFirefly’s Bodacious

Bar-B-Que and BeyondGlobex Brands, Inc.Home Maintenance

Organization HP Hood LLC

JM Family Enterprises, Inc.JM&A Group

Joe's American Bar & GrilleKiss 108 FM - WXKS

Papa Razzi Pino’s Pizza

Polar Beverages, Inc.Pulse Media, Inc.

Shaw’s Supermarkets, Inc.Sostek Home CareStacy’s Pita Chips

Supreme Industrial Products, Inc.

Tex’s BBQ ExpressTJX Companies, Inc.

Trader Joe's WH Lailer

Special Thanks toMiller Wachman LLP

Individual photos weretaken at the SurvivorStation and mounted onboards for display at theclosing ceremonies.Here, survivors posewith the photo boards.BTS Director of SupportServices Sarah Gupta isat far left, in the hat.

At right are Doug and Michelle Smith,who came from Oregon to participate inmemory of Doug’s mother. But even theywere not the farthest-traveling Riders - survivor Frank Box came in from Alaska!

This year’s 1,200 Riders from 18 statesenjoyed the best of New England springon the beautiful routes through Boston’sscenic western suburbs - and beautifulweather, despite a dubious forecast!

Brain Tumor Society 800.770.TBTS (8287) Summer 2006 Vol. 17, No. 3, page 10Brain Tumor Society 800.770.TBTS (8287) Summer 2006 Vol. 17, No. 3, page 10

2nd Billy Grey Ride for Research

Students Supporting Brain TumorResearch (SSBTR) held its fifthannual Walkathon in February.This year, at least3,000 people fromdozens of schoolsfrom across Arizonaparticipated, raising$83,000 for BTS.Students and parents organized a full day around the Walkathon.BTS Director of DevelopmentBrianna Nadelberg said, “TheWalkathon brings in importantfunds for brain tumor research,and SSBTR’s work in raisingawareness among young people is invaluable to our mission ofresearch, education and support. It was great to be there for thisincredible event!”

Carrie Treadwell, BTS Director ofResearch Programs, enjoyed theWalkathon with her twin daughters.

SSBTR

Barrows Neurological Institute scientist andBTS Research Grant recipient AdrienneScheck, PhD (l) and SSBTR foundingadvisor Steve Glassman at the Walkathon.

Westview Walkathon (OR) KPMG Jeans Day (DC/VA)

Carrots for a Cure (RI)

Westview High School inPortland, Oregon held its firstwalkathon to benefit the BrainTumor Society, and at least 500individuals participated! Otherevents during Spirit Week addedto the pledges raised by theWalkathon, and the total was$3,000 and counting at press time.

Survivor Debra Almonte of NorthProvidence, Rhode Island createdand sold chocolate“Easter bunnycarrots.” Her one-of-a-kindfundraiseryielded $370for BTS.

Upcoming: Ironman (WI)In September, Robert Matusiakparticipates in Ironman Wisconsin:a 2.4 mile swim, a 112 mile bike,and a 26.2 mile run. The fastestracers will finish in about 9 hours,the final finshers in just under 17hours, and Robert hopes to finishsomewhere in between. He willcompete in memory of his uncle,Jerry Clancy, who succumbed to a brain tumor in April 2000.

The Washington, DC and TysonsCorner, Virginia, offices of thenational accounting firm KPMGheld a Jeans Day fundraiser inMay. Thanks to the generosity ofat least 200 employees in the twolocations, KPMG raised more than$1,300 for BTS!

The Billy Grey Ride for Research inpicturesque Saratoga Springs, NY

has become a wonderful celebration oflife, in addition to raising $35,000 bythe day of the event. The ride broughttogether more than 200 cyclists, fromages 6 to 70+. Thanks to the dedicationof sponsors, donors, riders and volunteers, everyone left with a smile,despite cold mid-morning rain. Special thanks are due to City Halland the Saratoga National Historic Park for their support of the event.Mayor Val Keehn welcomed riders and cycled the 10 mile route.County Supervisor Joanne Yepsen read a proclamation designatingMay 21 as Billy Grey Day, recognizing Billy’s courage and love oflife and the lasting legacy of his Chair of Research in the BTSResearch Grant Program. Billy’s Chair helped to advance research fora potential vaccine for brain tumors that received phase one clinicaltrial approval this past February.

The day was also dedicated to Sol Kahn, an Albany Academy senior and classmate of Billy’s, and Kirsa Johnson-Chappell, an avidcyclist, triathelete and acute care RN, both fighting cancers.

Best team name was awarded to the third-grade riders at AlbanyAcademy, the “Brain Tumor Defeaters,” who summed up the spirit of the Billy Grey ride. Please visit www.teambilly.org to learn more.

Brain Tumor Society 800.770.TBTS (8287) Summer 2006 Vol. 17, No. 3, page 11Brain Tumor Society 800.770.TBTS (8287) Summer 2006 Vol. 17, No. 3, page 11

SSttaanndd UUpp FFoorr LLiiffeeOn April 1, BTS hosted “Stand

Up For Life,” a night of com-edy and fundraising in honor offounding BTS Board MemberSteven E. Karol. Karol’s fatherpassed away from a brain tumor in 1983, and foryears, the familyhas supportedBTS through the Herbert M.Karol Chair ofResearch, inaddition toSteven’s work on the Board of Directors.

More than300 guests enjoyed an evening atthe Royal Sonesta in Cambridge,Massachusetts. The silent and liveauctions offered incredible prizes,including personal cooking classeswith the executive chef at a

Boston hotel, a Red Sox sky box,and the chance to participate in theinvitation-only St. Barthelemy’sBucket Regatta 2007, the world’spremier yachting getaway.

The evening’s special guest performer wascomedian RobertSchimmel. Manyof Schimmel’sfans know that heis a cancer survivor, but fewerrealize that he lost a young son to abrain tumor.Schimmel’s first-hand knowledge

of the challenges faced by braintumor families allowed him to end his stand-up routine with athoughtful reflection on the importance of events like “StandUp For Life.”

From left, Michelle and Steven Karol withco-chairs Audrey and Mark Schuster.

Bringing Down the HouseThe Gerson Family

Michelle and Steven KarolSinesia and Bill Karol

Audrey and Mark SchusterLaurie and Eric Slifka

Marguerite and Conrad Wetterau

Curtain CallShelley and Jonathan IsaacsonJane Karol and Howard CooperJoan Karol and Irving Salloway

Tom KarolMintz, Levin, Cohn, Ferris,

Glovsky and Popeo, PC

Julie and Bob Adams Linda and Dan WaintrupJohn Hancock Life Insurance Watermill GroupKODA Enterprises Group, LLC

Take A BowDavid A. Bamel / USI New England Insurance Broker

The Berman Family FundJoan and Ted CutlerMr. and Mrs. Disque DeaneLynne and Joseph GoodmanDebbie Lewis and Robert GrinbergJill and Bill Leisman

Freya and David MaltzBeatrice Mitchell and Paul SperryShelly and Ofer NemirovskyLauren and Jonathan PennMaureen and Patrick Purcell / Herald Media Inc.

Schuster Family Charitable FoundationLaurie and Todd Schuster

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Co-chairs Sinesiaand Bill Karol.

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From left, BTS Executive Director NealLevitan, comedian Robert Schimmel, andhonoree Steven Karol after the program.

Co-chairs Margueriteand Conrad Wetterau.

Co-Chairs Geri Gerson, left, and JoanKarol, who is Steven’s mother.

The Royal Sonesta ballroom awaited theStand Up For Life guests.

Nonprofit Org.U.S. PostagePAIDBillerica, MAPermit No. 66

The Newsletter of

124 Watertown Street, Watertown MA 02472-2500

FORWARDING SERVICE REQUESTED

Visit us on the web atwww.tbts.orgHeads UpHeads Up

Annual Meeting and Dinner including the 2006

Research Grant Awards

BTS in the Mid-AtlanticJoin us at an event near you!

ClevelandClevelandFall 2006 - check back for detailsOne-Day Seminar withThe Cleveland Clinicwww.tbts.org

PhiladelphiaPhiladelphiaSunday, November 5Race for HopeBegins and ends at thePhiladelphia Art Museumwww.braintumorsociety.org

Monday, October 23, 2006in Needham, Massachusetts

Reception / Meet the Scientistsfollowed by Dinner Program

For details, visit www.tbts.orgor call 800.770.8287

BTS Founder Bonnie Feldman