2014 Major Stepping Out to Cure Scleroderma Sponsors

Find all the walk fun on: Flickr

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SCLERODERMA EXCHANGE

M I S S I O N

To provide educational and emotional support to people with scleroderma and their families

To stimulate and support research designed to identify the cause of and cure for scleroderma as well as to improve methods of treatment

To enhance the public’s awareness of this disease

Published by Scleroderma Foundation/Tri-State, Inc. Chapter

Binghamton, New York

Volume 3, 2014www.SclerodermaTriState.org

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Walk season is over for 2014, but as we put another year in the history books, we take a moment to thank each and every one of you. Since June is scleroderma awareness month, it is only right for it to be a month of celebration, remembrance and hope. Our walks are more than stroll in the park (or mall). For many, there is a chance to reacquaint with friends, a moment to celebrate life, and a time to be encouraged by those who have been touched by scleroderma. This year the hard work of our volunteers and dedication of participants, made it possible to have 12 walks throughout the Tri-State area. Together, 3,100 walkers alongside several hundred volunteers Stepped Out in a very public manner to further our mission. Thanks to these efforts we raised over $400,000 as well as secured news coverage and created lots of opportunities to tell others our scleroderma story.

The work of Tri-State volunteers also encouraged businesses to support our cause in a generous way through services and food and raffle items for all of our events in addition to more than $65,000 in cash donations. We are extremely grateful for all of these donations, and diamond sponsor Bethpage Federal Credit Union; our three platinum sponsors Actelion Pharmaceuticals, Crane Foundation and Valentine Fenti; and our gold sponsor AriZona Beverages took us to higher levels. Thank you to the volunteers that reached out to these businesses and thank you to the sponsoring businesses and foundations for caring. Each walk season is special for everyone involved. It is a lot of hard work and dedication for all those involved and comes together for a good cause, offering hope for everyone. The goal was to offering a meaningful experience for all who attended while raising awareness and funds. We hope that with this issue of the Scleroderma Exchange, you have a chance to smile and relive a walk day that was special for your reasons. Please know that your graciousness, kindness and incredible efforts are a light to so many. Thank you for your dedication, passion, care, time and support. Working together we make a difference.

Making a Splash by Stepping Out

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Employee Giving Employees of the U.S. Government, State of New York, Municipal workers across all of New Jersey, City of New York or the City University of New York, have the opportunity to contribute to the Scleroderma Foundation/Tri-State Chapter through your fall employee workplace campaign. Choose the appropriate number and make a difference. (CFC #38106; NJ ECC #6688; SEFA # 999 00581; CMC & CUNY-CVCG #2539).

All private corporation employees, if you conduct a workplace campaign please remember to write down our name (Scleroderma Foundation/Tri-State Chapter, IRS# 13-3128296). If you don’t have a form which allows this, ask the person who is soliciting you for the form or find this option on your online solicitation form.

Encourage your coworkers to take advantage of this easy opportunity to help overcome this terrible disease. A few dollars a week over the course of the year really adds up and helps to make research, patient support and awareness efforts possible.

Your ongoing contribution through payroll deduction will make a difference in the lives of many.

Scleroderma FoundationTri-State, Inc. Chapter

FoundersMark Flapan, Ph.D.Helene Flapan, M.A.

Board of Directors Co-PresidentsJeff Mace Bruce CowanVice PresidentMarc KriegerTreasurerRosemary MarkoffSecretaryJune Bender

Members Suzy BallantyneMaryann CaliriEmily ChillinoGerold KirschnerEstelle RandolphFrederick ShawMarilyn SibleyDebra Signorelli

Medical & Scientific Advisory Board Co-ChairsHarry Spiera, M.D.

Mount Sinai, School of MedicineRobert Spiera, M.D.

Hospital for Special Surgery Weill Cornell Medical Center

MembersHoward Blumstein, M.D.

Rheumatology Associates of Long IslandAvram Goldberg, M.D.

Long Island Rheumatology AssociatesNYU Langone Medical Center

Jessica Gordon, M.D.Hospital for Special Surgery

Barry L. Gruber, M.D.Long Island Regional Arthritis & Osteoporosis Care, PC

Charles P. Melone, Jr., M.D.The Hand Surgery Center, Beth Israel Medical Center

Maria Luisa Padilla, M.D.Mount Sinai, School of Medicine

Naomi F. Rothfield, M.D.University of Connecticut School of Medicine

Lee Shapiro, M.D.Center for Rheumatology

Staff Executive DirectorJay PeakDirector of Development & FundraisingAlex MatichDirector of Patient Education & SupportMary Beth Bobik-KadylakCommunications Manager Jocelyn Bailey BookkeeperKaren De Luke

59 Front Street, Binghamton, NY 13905 (800) 867-0885 • fax: (607) 723-2039 email: sdtristate@sclerodermatristate.orgwww.SclerodermaTriState.org If we have inadvertently omitted or misspelled your name, please let us know by calling (800) 867-0885.

Fall Tri-State Education EventsOur chapter still has several opportunities for you to continue to expand your knowledge of scleroderma and related illnesses. We invite leading experts in the treatment of scleroderma to speak at our education forums. All of these events are held free of charge thanks to the generosity of our donors.

This year we will also host our first African-American Health Awareness Day. This special, all-day event will feature speakers that will encourage attendees to improve their overall health by journaling, meditation, proper nutrition and more. Then, to round off the year in style, our annual Scleroderma Research Forum will feature two very special researchers from Texas as our guests! Please take advantage of these opportunities to become an empowered patient, family member or caregiver and sign up today on our website!

September 13, 2014Bone & Joint Center 1367 Washington AveAlbany, NY 12206

September 27, 2014William W. Backus Hospital326 Washington StNorwich, CT 06360

October 11, 2014 African American Health Awareness DayRochester Airport Marriott 1890 Ridge Rd. W Rochester, NY 14615Virginia Steen, MD MD Georgetown University

October 25, 2014Rutger’s University 126 College Ave New Brunswick, New Jersey

November 23, 2014Scleroderma Research ForumHospital for Special Surgery 535 E 70th St. New York, NY 10021Robert Spiera, MDMaureen D. Mayes, M.D., M.P.H.Heidi Jacobe, MD

The many hands that make Stepping Out possibleOur 12 Stepping Out to Cure Scleroderma events are the cornerstone to making the Tri-State Chapter what it is. Not just because it is our major fundraiser, it is because of the many hands and faces we see each year come out and make our walk events happen. Every location has its own flair, its own way of doing things, and together they make the month of June a month for celebration.

From our primary volunteers that secure locations, vendors and permits down to every eager hand that is there early in the morning to tie balloons, haul ice, set up tents and take care of registrations, we thank you for every minute of your time. Together we make a walk happen and a positive difference in the lives of many.

AlbanyAlbany

Ridgefield Park June 21, 2014Overpeck Park, Ridgefield Park, NJ Amount Raised: $41,182 Walkers 423Primary Volunteers: Marc Krieger, Natalie Puccio-MurdoloPerson raising the most money: Erin CalevTeam raising the most money: Team KriegerTeam with the most members: Team Will & Jan’s Clan

Teams: Amy’s ArmyCarlson4Ellen’s AngelsFernando AhumadaFor CarolFossilsGoetzStrongJan’s ClanJumping JudyLoving LynneMcLaughlin’s WalkNatalie2014Priscilla’s AngelsSandy’s SaintsTeam ArabellaTeam JeanineTeam Juice

Team KriegerTeam LorettaTeam NoelleTeam PeggyTeam RachaelTeam RussellTeam ShanaTeam SicaTeam WillThe Novarente’s

Corporate Sponsors: Cushman & Wakefield of New Jersey, Inc.Kearny Federal SavingsKwartler Associates, Inc.Parette Somjen Architects, LLCPoskanzer Skott ArchitectsRLB Food DistributorsSki Barn

Teams: Forever FriendsGarlands GallopILove KayJames Ross SalonLisa’s HopeRoxies RascalsTeam Joanie KTeam ChrisTeam KristenTeam Patty

June 7, 2014Seneca Park, Rochester, NYAmount Raised: $37,900 Walkers: 264Primary Volunteers: Rosa Johnson, Edith Diane Reynolds & Marilyn SibleyPerson raising the most money: Val FentiTeam raising the most money: The Hare RaisersTeam with the most members: Forever Friends

Rochester

Team Pullano & FarrowTeam SmurfThe Hare RaisersWalkers 4 WandaCorporate Sponsors: Madeline CateringPullano & FarrowRochester Black Bar AssociationSisters for a Better Black CommunityTerry Tree Service, LLCZeta Phi Beta, Theta Alpha Zeta Chapter

Syracuse Teams: Carole’s CrusadersJanineNancy’s NomadsStevensonTeam ChristineTeam NinaTouron

Corporate Sponsors: Haun Welding SupplyPOMCO GroupTen Count Farm

June 8, 2014Onondaga Lake Park, Liverpool, NYAmount Raised: $11,000 Walkers: 160Primary Volunteers: Kara Peck, Nancy Sumner Suzanne & Gary Craft Person raising the most money: Linda Jackson Team raising the most money: Nancy’s Nomads Team with the most members: Team Nina

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Teams: Anna’s AngelsCharlotte’s AngelsCourtney’s CrusadersDemetria’s FriendsDon & RobertIn Memory of Viola ZinzowJoe MeaneyKristinLana’s CrewNancy Jean’s TeamSuzy’s SuportersTeam GageTeam MaryTeam Mayville and RennaTeam RaffertyTeam Susan King

Corporate Sponsors: Albany ENT & AllergyCardiology Associates of Schenectady, P.C.FealGood FoundationFenimore Asset Management, Inc.Galesi Group / Northeastern Industrial Park, Inc.Gialanella Family DentistryGoldstein Auto GroupGolub Corporation Co. - Price Chopper Corp.New York State AFL-CIONew York State United TeachersPillar TSC Blower CorpRJ McNamara Financial ConsultantRobinson ACE HardwareSidney & Beatrice Albert FoundationSrs of St. Joseph of Corondelet, Albany ProvinceSteffens Scleroderma Center, The Center for RheumatologySummit ApplianceUlster Federal Credit Union

Binghamton

Teams: Bob’s BabesCarol McM&MsConnie’s Crew-SadersCrystal’s CrewDysjointedJill’s JewelsKaddy’s KlassicsNichole2k14Porcino’s PalsRiverside RamblersRosy’s BudsTeam Costello

June 1, 2014Otsiningo Park, Binghamton, NYAmount Raised: $26,800 Walkers: 260Primary Volunteers: Rosemary Markoff, Carol & Marty PorcinoPerson raising the most money: Rosemary MarkoffTeam raising the most money: Rosy’s Buds Team with the most members: Connie’s Crew-Saders

Corporate Sponsors: Bob Carr 2.0D & L Rental, LLCExcellus Health Plan, Inc.Gary’s U Pull-ItHP Hood LLCM&T Charitable FoundationNBT BancorpPacemaker Steel & Piping Co., Inc.Piaker & Lyons, P.C.Progressive Tool Company, Inc.Regional Rheumatology Associates LLPTall Pines Farms, Inc.The George Group, Merrill LynchTioga State BankVisions Federal Credit Union

June 1, 2014Crossgates Mall, Albany, NYAmount Raised: $42,200 Walkers: 252Primary Volunteers: Lori Presley & June Bender Person raising the most money: Nancy Sokil Team raising the most money: Nancy Jean’s Team Team with the most members: Nancy Jean’s Team

Buffalo

Teams: Anne’s FriendsKaren’s GolfersKathy’s KrewKent Knight’sLucky DucksNonna’s Donors

June 21, 2014Eastern Hills Mall, Williamsville, NYAmount Raised: $15,300 Walkers: 159Primary Volunteers: Prudy & Tom Fazio, Kathy LeutzeLisa Fazio-BeesonPerson raising the most money: Noreen & Albert PlattenTeam raising the most money: Kathy’s KrewTeam with the most members: Kathy’s Krew

Sclero SistersSteps 4 SandieTeam HeerTeam NoelleTeam Tony

Hartford June 14,2014Blue Back Square, West Hartford, CT Amount Raised: $29,700 Walkers: 386Primary Volunteers: Cheryl Argiros, Julie Albrecht, Christine Cassidy, Karen Legault, Ruth BielerPerson raising the most money: Dianne PandolfiTeam raising the most money: Team Ya Ya’s Team with the most members: Quags & Brenda’s Beautiful Butterflies

Teams: Brenda’s Beautiful ButterfliesCheryl’s AngelsCheryl’s Crusaders ConnecticutCovalli’s CruisersDawnylou’s Dream TeamDo WorkJune BugLiz’s Lucky Charms

Mimi’s MarchersQuagsRaising HopeShirley’s AngelsSophia’s SuperstarsTeam BestestTeam WesterlyTeam Ya Ya’sThe Bean Dream TeamWendi’s WondersTeam Val

Corporate Sponsors: PoliceApp.comTurbin Control, Inc.

Long Island

Teams: Amy HillAngel WingsAnni LevBina’s HopeCleary4ACureDanielle Asip/dePaloEast Coast WalkersInfect HopeJosephines Dancing AngelsNassau/Queens Support Group StridersSusan EhrlichTeam AdvantageTeam BunkerTeam Robert CoppolaTeam MuscoTeam NimaTeam RaindropTeam StrongTeam Verna MaeWalking For AnnettWe Love Dearly

June 1, 2014 Wantagh Park, Wantagh, NYAmount Raised: $82,000 Walkers: 433Primary Volunteers: Barbara Geller, Dawn Selg, Denise GesualePerson raising the most money: Barbara MuscoTeam raising the most money: Team MuscoTeam with the most members: Team Rain Drop

Corporate Sponsors: Advantage CommunicationsAdvantage GroupBarrie E. Bazarsky, Attorney at LawBethpage Federal Credit UnionFusco, Brandenstein & Rada P.C.Greebel & GreebelHellma USAIGG AmericaJ Hubner LLCJustine M Metz FundKey ComputingLand Baron Abstract Company, Inc.One Oak TransportationSaf-T-SwimScleroderma & Raynauds Treatment Center of the North Shore LIJ Health SystemTelephonics Corp.Turan Family Foundation

PoughkeepsieJune 21, 2014Vassar College, Poughkeepsie, NY Amount Raised: $26,300 Walkers: 231Primary Volunteers: Carolyn Cornell, Scott Cornell Person raising the most money: Antonietta Chiocchi Team raising the most money: Sclerovivors Team with the most members: Team Val

Teams: 4 BeaKirstenMolly’s AngelsSclerovivorsTeam JoeyTeam Orange CountyTeam Orange County TwoTeam TerriTeam ValTom’s Foggy Dew CrewWalkin For Fish

Corporate Sponsors:Hudson Valley TriviaKingston NissanSalute Restaurant

ManhattanJune 15, 2014Riverside Park, New York, NYAmount Raised: $58,100 Walkers: 314Primary Volunteers: Olga Casarella, Bruce Cowan, Lindsay CowanPerson raising the most money: Stacy BarronTeam raising the most money: Sattyn & Her AngelsTeam with the most members: Arcuri Hoopsters

Teams: Arcuri HoopstersBruce’s AngelsIn Memory of Susan CostelloLoving the Skin I’m InPhilomena PhlyersRoseanne LoughnaneSattyn & Her AngelsShirley AlvarezTeam BarbaraTeam BommaritoTeam ChinelliTeam Connie O.

Team CowanTeam CrystalTeam EileenTeam JassyTeam LeratoTeam StephTeam YolandaTiese

Corporate Sponsors: Daniell Family FoundationErnest C. Auer, Jr.Hand Surgery Center, Charles Melone, Jr., M.D.Hospital for Special Surgery

Stamford

Teams: A-TeamItalian StallionsJanna’s TeamPatti CakesTeam GrammieTeamLatishaTeam Nonna

June 29, 2014Westhill High School, Stamford, CT Amount Raised: $23,000 Walkers: 112Primary Volunteers: Pat & Pete Gerardi, Angie & Mary Contadino Person raising the most money: Sina PassarelliTeam raising the most money: Itallion Stallions Team with the most members: TeamLatisha

Team SueThe Wolf PackWendy’s Warriors

Corporate Sponsors: Columbiettes, St. Augustine Council 41Crane FoundationRiko’s Pizza

Plattsburgh

Teams: Betty’s BandwagonBreen’s DreamKate’s LakersMunson Crew

June 8, 2014 Beekmantown Town Hall Park Amount Raised: $10,391 Walkers: 133Primary Volunteers: Kate Duprey, John & Pam Munson, Amiee Demers-Bourgeois, Christine WatersPerson raising the most money: Alyssa WatersTeam raising the most money: Breen’s Dream Team with the most members: Kate’s Lakers

Osborne Family & FriendsRip Red

Corporate Sponsors: Best BuyGiroux’s Poultry Farm, Inc.

Tri-State’s 2014 Stepping Out to Cure Scleroderma events were a time to celebrate, to remember, to support and to gather for lots of reasons. The walks were a success because of the outstanding efforts of local volunteers and participants and the support of local donors. Thank you for your efforts, for your energy and most of all for the hope you shared. Together we made

a difference. Together we will continue to make a difference; we are much stronger when we work together.

Thank You For Your SupportStepping Out To Cure Scleroderma Tri-State Chapter | 2014

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Non-Profit OrganizationUS Postage

PAIDBinghamton, NY

Permit No. 21

Tri-State, Inc. Chapter

59 Front StreetBinghamton, NY 13905

The Scleroderma Foundation in no way endorses any of the drugs or treatments in this newsletter; the information is provided to keep its readers informed. Because the manifestations and severity of scleroderma vary, individualized medical management is essential. Therefore, it is strongly recommended that all drugs and treatments be discussed with the reader’s physician(s) to assure proper evaluation and treatment.

Send checks payable: SF Tri-StateScleroderma Foundation/Tri-State, Inc. Chapter,

59 Front Street, Binghamton, New York 13905

If paying by credit card mail to the above address or FAX form to (607) 723-2039

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Awareness Magnet $4.00 eachQty _______

Baseball Cap$10.00 eachQty _______

Walk Shirt 2014

$7.00 each (3 for $15.00)

Adult: S - XXL Child: 2-16Qty ___Size(s) ___

Scleroderma Awareness ItemsAll prices include shipping

Retractable Umbrella $8.00 eachQty _______

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Let us help you turn your event into a sucsessful fundraiser!

Though the use of our online fundrasing software HopeRaiser, raising money for the Tri-State Chapter has gotten easier. Hoperaiser

makes it simple for you to set up a donation page, manage your contacts, and share with friends and family near and far. Contributions are sent directly to Tri-State, and donation acknowledgements are automatic. You can make a difference without a lot of extra work.

For more information on how to start your HopeRaiser today, please visit scleroderma.org and click on “Get Involved”, or call us at 800-867-0885.