SCLERODERMA EXCHANGE

Volume 3, 2013 Published by Scleroderma Foundation/Tri-State, Inc. Chapter www.SclerodermaTriState.org Binghamton, New York 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

Stepping Out is Possible Because of You We had another great walk season, because YOU care. Stepping Out To to the many other local corporate sponsors who together with our Cure Scleroderma is now more than a decade old in half of our walk areas major sponsors, contributed almost $70,000. Let’s not forget the and is still going strong because of great volunteers and participants who work hundreds of local companies and restaurants that donated their so hard every year. Almost 3,100 walkers joined several hundred volunteers products and services to our walks, both as raffle items and food to spread the word across their network of friends, family and various media products. THANK YOU! channels and raise $435,000. YOU are the best and other chapters across the Because you responded to this year’s walks in such a BIG way, we country continue to marvel in how you succeed year after year. wanted to help you see what working together “Tri-State style” looks When many other established charities are seeing dwindling results you have like. They say pictures are worth a thousand words and we have over gone that extra mile and keep looking for new sponsors and opportunities. 2,500 pictures between this newsletter and our online pages. Please Every year we hear from new participants that they are so happy they found spend a few minutes looking through this special walk edition of the the Foundation and want to help fulfill our mission. THANK YOU! “Scleroderma Exchange” and as the edition unfolds, realize what an impact you had as part of the 2013 Stepping Out effort. Your hard Special thanks to our two diamond sponsors Bethpage Federal Credit work and enthusiasm gives us hope in our fight against scleroderma. Union and Actelion Pharmaceuticals; our three platinum sponsors Crane Foundation, Helen Polenz and Valentine Fenti; and our two gold sponsors AriZona Beverages and Constant Contact. We would also like to say thanks Find all the walk fun on: Flickr 2013 Major Stepping Out to Cure Scleroderma Sponsors

I Love Kay Scleroderma Foundation Tri-State, Inc. Chapter Fun ways to Raise Funds and Awareness Founders Every year we come together in June to bring not only awareness to Scleroderma, but also to raise funds Mark Flapan, Ph.D. Helene Flapan, M.A. to help beat this disease. We are proud of our patients, families and supporters that find new ways of collecting the many dollars that it takes to act on our mission of support, education and research. President Jeff Mace Vice President Bruce Cowan Treasurer Rosemary Markoff Secretary June Bender Members Alex and Ani Charmed by Charity Suzy Ballantyne An in-store event on May 21, 2013 at Alex and Maryann Caliri Emily Chillino Country Coffee Shop Ani SoHo brought people together over love Andrea Goldstein Northern New Jersey support group leader for the collectable bracelets. A portion of the Gerold Kirschner Kitsa Jobeless once again worked with the proceeds was donated to Tri-State. Marc Krieger Country Coffee Shop to donate a portion of Estelle Randolph their June earnings to Tri-State. Frederick Shaw Debra Signorelli Patricia Waszmer Joanie Weick Medical & Scientific Advisory Board Co-Chairs Rochester Masquerade Ball Harry Spiera, M.D. The second annual Rochester Masquerade Ball was Mount Sinai, School of Medicine Gerry’s Golf-less golf organized by Zeta Phi Beta Sorority, Theta Alpha Robert Spiera, M.D. Organized by Gerold Kirschner in memory of Zeta Chapter. A wonderful night at the Rochester Hospital for Special Surgery Didi Kirschner and Gary & Ellie Lerner, this Museum of Art full of color, fun and dancing. Members event was a huge success on its 19th playing! Howard Blumstein, M.D. Rheumatology Associates of Long Island Avram Goldberg, M.D. Scleroderma & Raynauds Treatment Center North Shore – Long Island Jewish Health System Jessica Gordon, M.D. Hospital for Special Surgery Appointment Cancelation notice Barry L. Gruber, M.D. Scleroderma Night at the Syracuse Chiefs Long Island Regional Arthritis & Osteoporosis Care, PC Kevin J. Hansen, DDS, PLLC in Brooklyn, Batter up! With the help of sponsor POMCO Charles P. Melone, Jr., M.D. NY charges a $25 fee for not keeping a dental The Hand Surgery Center, Beth Israel Medical Center Group, there was a great night of baseball and appointment. He was gracious to donate Maria Luisa Padilla, M.D. awareness building! proceeds from six months worth of missed Mount Sinai, School of Medicine appointments to Tri-State. Great idea! Naomi F. Rothfield, M.D. University of Connecticut School of Medicine Lee Shapiro, M.D. Center for Rheumatology Executive Director Jay Peak Director of Development & Fundraising Cherry Creek Golf Day Alex Matich Director of Patient Education & Support A beautiful day on the green complete with a Staten Island Dinner Dance Mary Beth Bobik-Kadylak cause! A donation and day of golf was made 6th Annual Staten Island Dinner dance was a Communications Manager on behalf of Lorna Verdone and Judy Soltner. show stopping evening complete with wonderful Jocelyn Bailey Thanks to everyone involved! Bookkeeper friends and memorable entertainment! Karen De Luke 59 Front Street, Binghamton, NY 13905 (800) 867-0885 • fax: (607) 723-2039 email: [email protected] www.SclerodermaTriState.org If we have inadvertently omitted or misspelled your name, please let us know by calling Hartford, CT Dinner Dance Want to help? (800) 867-0885. 21 years of support at the Dinner Dance Have a great idea to fund raise in your area? brings a wonderful night of friendship and Contact the Tri- State Chapter and let’s figure camaraderie. out how to get started! 2 Strong Words to Walk To Fall Tri-State Education Events 2013 Albany Scleroderma Walk Speech by Lee Shapiro MD Because we all know that knowledge is a strong ally in finding a cure for Scleroderma, the Tri-State Chapter brings Dr. Shapiro is at the forefront of caring for those with Scleroderma. Between you opportunities to hear from those at the his Albany, NY area practice and serving as director of the Steffens Scleroderma forefront of research and medical care. With Center he has had the chance to impact many patients as well as be involved a growing schedule of events we provide an in scleroderma research. His understand of scleroderma and the knowledge array of expert speakers focused on patient he is able to share with patients have created a strong allegiance with patients centered topics. throughout upstate NY, Vermont and western Massachusetts. He provided these encouraging words to kick off this year’s Stepping Out to Cure Scleroderma All Tri-State Educational Forums are free walk in Albany. of charge. Visit SclerodermaTriState.org Lee Shapiro, MD for more speaker and event information as it becomes available. To view previous Every man, woman, and child who has scleroderma needs to be a scleroderma expert, an presntations visit www.sclerodermavideo.com advocate for awareness and improved care. Those of you here are in the vanguard. You haven’t run away from confronting the disease. Daily, you will encounter few people who know about scleroderma and many who do not. Make them aware, make scleroderma a name that isn’t strange or new to those around you. Make them aware that this is not an exotic or rare disease. Make them aware that hundreds in the Capital District have this disease. Make them aware that we don’t yet have a cure. And be an educator for your health care providers, too. Many know too little about this disease. Know enough to both protect yourself and inform others. Know enough to be a resource to those who care for you. Know enough to advocate for your needs. Your silence or ignorance can put YOU at risk, so don’t let yourself be a victim of the disease or of uninformed care. Mridu Gulati, MD, MPH speaks at the Yale Education Scleroderma doesn’t affect everyone the same way or at the same speed or the same severity. Forum, June 2013 Know what form of the disease you have. Know what complications can occur and know the warning signs. Know your medicines. Know the latest research breakthroughs and take comfort that never has there been so much research into the cause and treatment of this disease. Scleroderma Educational Forum September 14 How will you know? The Scleroderma Foundation, through the local support groups, the Unity Health System website, brochures and educational forums is your best source. The Foundation is there to Rochester, NY support you, to support research, and to make sure decision makers know your needs. The Capital District has great support groups and caring and interested representation in Congress. Scleroderma Educational Forum Let us, right here, be the best informed and most active advocates for the treatment and conquest September 21 of this disease. Albany College of Pharmacy and Health Sciences Student Center, Albany, NY

Scleroderma Educational Forum October 5 Employee Giving University of Connecticut Medical Center Farmington, CT Employees of the U.S. Government, State of New York, Municipal workers across all of Scleroderma Educational Forum New Jersey, City of New York or the City University of New York, have the opportunity to October 6 contribute to the Scleroderma Foundation/Tri-State Chapter through your fall employee Hofstra University workplace campaign. Choose the appropriate number and make a difference. (CFC #38106; Hempstead, NY NJ ECC #6688; SEFA # 999 00581; CMC & CUNY-CVCG #2539). Scleroderma Educational Forum All private corporation employees, if you conduct a workplace campaign please remember to (w/ DV Chapter) write down our name (Scleroderma Foundation/Tri-State Chapter, IRS# 13-3128296). If you October 26 don’t have a form which allows this, ask the person who is soliciting you for the form or find Robert Wood Johnson University Hospital this option on your online solicitation form. New Brunswick, NJ

Encourage your coworkers to take advantage of this easy opportunity to help overcome this Scleroderma Research Forum terrible disease. A few dollars a week over the course of the year really adds up and helps to November 16 make research, patient support and awareness possible. Hospital For Special Surgery New York City Your ongoing contribution through payroll deduction will make a difference in the lives of many. 3 Non-Profit Organization US Postage PAID Binghamton, NY Permit No. 21

Tri-State, Inc. Chapter 59 Front Street Binghamton, NY 13905

Scleroderma Awareness Items Tri-State Connect Recordings Available All prices include shipping

Stadium Blanket Aluminum Water Bottle Blue or Silver $15.00 each $8.00 each Tri-State Connect Support Qty______Qty_____ Color______Group meeting is wherever you are. This meeting is held once a month through a teleconference allows those all over the Tri-State Walk Shirt 2013 area and beyond to participate. Each meeting $7.00 each Baseball Cap has a speaker and you have the ability to listen (3 for $15.00) in and ask questions. $10.00 each Adult: S - XXL To make Tri-State Connect even more Qty______Child: 2-16 accessible, each teleconference is recorded! The Qty____Size(s)____ speaker’s comments, as well as the questions and answers are available for you to review at your convenience. You can find the recordings and lots of other helpful resources on Tri-State’s resources Reusable Dashboard page, Resources.SclerodermaTriState.org. Catch Shopping Bag Sunshade up on meetings you missed or to revisit a topic $3.00 each you enjoyed! $8.00 each Qty______If you have any suggestions on topics you Qty______would like to hear more about, please contact Mary Beth Bobik-Kadylak, Director of Patient Education & Support at Send checks payable: SF Tri-State [email protected] Scleroderma 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 Flickr Name:______Address:______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. Phone:______Email:______Because the manifestations and severity of scleroderma Visa Master Card Am Ex Discover vary, individualized medical management is essential. Credit Card #:______Therefore, it is strongly recommended that all drugs and Exp. Date:_____/_____/_____Security Code______treatments be discussed with the reader’s physician(s) to assure proper evaluation and treatment. Signature:______10 (Buffalo Continued) (Manhattan Continued) (Ridgefield Park Continued) year Sharing A Bond Teams: Team Pacheco anniversary Steps for Sandie Arcuri Hoopsters Team Peggy Albany Team Heer BNY Mellon Team ROH Team Tony Buckley Team Terry June 2, 2013 Cazzy’s Crew Team Will Crossgates Mall, Albany, NY Connie O Team YiaYia Amount Raised: $39,000 Walkers: 200 Dawson Scleroderma Foundation Union County Support Group Primary Volunteers: June Bender & Lori Presley Hartford Elizabeth Corporate Sponsors: Person raising the most money: Lisa Meaney In Memory of Beverly CoStar Group, Inc. In Memory of Marion Team raising the most money: Nancy Jean’s Team June 8,2013 Cushman & Wakefield of New Jersey, Inc. West Hartford Reservoir, West Hartford, CT In Memory of Mitzi Kearny Federal Savings Team with the most members: Nancy Jean’s Team In Memory of Susan Costello Amount Raised: $36,250 Walkers: 330 Kwartler Associates, Inc. Photographers: Loreta Dorn & Jay Peak Nessuna Paura Parette Somjen Architects, LLC Primary Volunteers: Sabrina Cameron, Ruth Saphirstein, Teams: Rosy’s Buds NYC Poskanzer Skott Architects 1961 T-Birds Christine Cassidy, Cheryl Argiros & Karen Legault Sattyn & her Angels RLB Food Distributors Aggie’s Angels Person raising the most money: Heather Johnson Team Barbara Ski Barn Annie’s Team Team raising the most money: Dawnylou’s Dream Team Team Beverly Carol Murray Team with the most members: Dawnylou’s Dream Team Team Chai 10 In Memory of Linda Team Chinelli Photographers: Mel Morales - Visually Impared year In Memory of Sandy Team Connie Photography, Dan Burns - Dan Burns Photography, Jay Peak anniversary In Memory of Viola Zinzow Team Cowan Rochester June 1, 2013 Jenna’s Team & Karen Legault Team Debra Jean Seneca Park, Rochester, NY Joe Meaney Teams: Team Eileen Kathleen Martinez Cheryl’s Angels Team Jassy Amount Raised: $44,250 Walkers: 250 LuLu’s Team Clauda’s Team Team O’Sullivan Primary Volunteers: Rosa Johnson, Edith Diane Reynolds Nancy Jean’s Team Covalli’s Cruisers Team Ryderz & Marilyn Sibley Suzy’s Suporters Dawnylou’s Dream Team Team Tiese Person raising the most money: Val Fenti Team Zuul SW Albany Support Group Ellen’s Team Team raising the most money: Forever Friends Team Cindy For Carol WeCanBeatThis Team with the most members: Walkers 4 Wanda Team Lana June Bug Corporate Sponsors: Team Mayville/Renna Lyn’s Lucky Charms Ernest C. Auer, Jr., In Memory of Madeline Auer Photographers: Bob Burris & Lynn Sindoni Team Rafferty Mimi’s Marchers Teams: Team Thomas Quags Aenon Jr. Missionaries Corporate Sponsors: Raising Hope Auckland Albany ENT & Allergy Shirley’s Angels Bev’s Fan Club Syl & Rho Plattsburgh Darling Anderson, Moschetti & Taffany PLLC Bruce Rasmussen, In Memory of Bob & Lynn Rasmussen Team Care for a Cure Fame Cardiology Associates of Schenectady, P.C. Team Doreen June 9, 2013 Friends Forever DeNooyer Chevrolet, Inc. Team Nadia Beekmantown Town Hall Park, Beekmantown, NY Galloping Garland FealGood Foundation Wendi’s Wonders Amount Raised: $10,500 Walkers: 150 I Love Kay Galesi Group / Northeastern Industrial Park, Inc. Corporate Sponsors: Primary Volunteers: Kate Duprey, Aimee Demers- James Ross Salon Goldstein Auto Group CrossFit Wallingford Bourgeois, Christine Waters & Pam and John Munson Lisa’s Hope Rochester Black Bar Golub Corporation Co. PoliceApp.com Person raising the most money: Alyssa Waters Helen Polenz, In Memory of Ann Steffens Train For Life Roxies Rascals Team raising the most money: Kates Lakers New York State AFL-CIO Sindoni Posse New York State United Teachers Team with the most members: Kates Lakers Suzi’s Supporters RJ McNamara Financial Consultant Photographers: Kate Duprey & Mike Kadylak Team Chesh Kat Sidney & Beatrice Albert Foundation Teams: Team Joan Srs of St. Joseph of Corondelet, In Honor of Sr. Mary Rose Noonan Long Island Converse The Hare Raisers Steffens Scleroderma Center, The Center for Rheumatology Kate’s Lakers Walkers 4 Wanda Summit Appliance June 2, 2013 Mooso Klan Corporate Sponsors: Ulster Federal Credit Union Wantagh Park, Wantagh, NY Munson Crew Ginna Nuclear Power Plant Amount Raised: $103,500 Walkers: 500 Patriot Harter Secrest & Emery LLP Primary Volunteers: Barbara Geller, Dawn Selg & RIP RED Val Fenti, In Memory of Kay Fenti Team Riley Larry Betler, In Memory Of Dottie Betler Denise Gesualle Corporate Sponsors: Rochester Black Bar Association Binghamton Person raising the most money: Barbara Musco The Villages at Unity Best Buy Team raising the most money: Infect Hope Giroux’s Poultry Farm, Inc. Wednesday Hikers June 2, 2013 Team with the most members: Team Rain Drop Zeta Phi Beta, Theta Alpha Zeta Chapter Otsiningo Park, Binghamton, NY Photographers: Dawn Selg & Jay Peak Amount Raised: $32,000 Walkers: 315 Teams: Primary Volunteers: Rosemary Markoff & Anni Lev Poughkeepsie Kate Chura-Lynch Brooklyn Walkers and Talkers Stamford Person raising the most money: Elie Ramia Celebrating Chloe Life Team raising the most money: Connie’s Crew-Saders Cleary4ACure June 15, 2013 June 30, 2013 Team with the most members: Rosy’s Buds Danielle Asip/de Palo Vassar College, Poughkeepsie, NY Westhill High School, Stamford, CT East Coast Walkers Photographers: Mike Kadylak, Karen DeLuke, Amount Raised: $20,000 Walkers: 200 Amount Raised: $20,000 Walkers: 90 I’d Rather be Cycling Primary Volunteers: Carolyn & Scott Cornell Primary Volunteers: Pat & Pete Gerardi, Angie & Jocelyn Bailey & Alyssa Micha Infect Hope Person raising the most money: Antonietta Chiocchi Mary Contadino Teams: Infinity Team raising the most money: Sclerovivors Bob’s Babes Josephine’s Dancing Angels Person raising the most money: Sina Passarelli Carol McM&Ms Mitchell Team with the most members: Molly’s Angels Team raising the most money: Itallion Stallions Connie’s Crew-Sadres Nassau/Queens Support Group Striders Photographers: Scott Cornell & Jay Peak Team with the most members: Patty Cakes Cooperstown Support Group Team Bunker Teams: Photographers: Mary Contadino & Joseph Passarelli Crystal’s Crew Team Express Annie’s Team Teams: Dysjointed Team Lago Kirsten Italian Stallions Jill’s Jewels Team M. Rod Michael’s Warriors Kim’s Krew Kaddy’s Klassics Team Monteverde Molly’s Angels Nonna Donna McM&M Team Musco Sclerovivors Patty Cakes Morning Glory’s Team Nima Team June Team Nonna Porcino’s Pals Team O’Sullivan Team Terri Wendy’s Warriors Riverside Rovers TEAM PATRICIA Team Val Corporate Sponsors: Rosy’s Buds Team Raindrop Tom’s Foggy Dew Crew Columbiettes, St. Augustine Council 41 Team Costello Team Strong Walkin For Fish Crane Foundation Team Elie Team Verna Mae Corporate Sponsors: Fairfield County Bank Team Rossi Team Veronica Kingston Nissan Riko’s Pizza Corporate Sponsors: Corporate Sponsors: Salute Restaurant A.C. Spear Electric, Inc. Advantage Communications D & L Rental, LLC Alpert Group, Morgan Stanley Smith Barney Excellus Health Plan, Inc. AriZona Beverage Co. Fred Jackson, In Memory of Phyllis Jackson Barrie E. Bazarsky, Attorney at Law Syracuse HP Hood LLC BDO Ridgefield Park M&T Charitable Foundation Bethpage Federal Credit Union June 9, 2013 NBT Bancorp Citi Bank June 9, 2013 Onondaga Lake Park, Liverpool, NY Pacemaker Steel & Piping Co., Inc. Constant Contact Overpeck Park, Ridgefield Park, NJ Amount Raised: $15,750 Walkers: 175 Piaker & Lyons, P.C. Deb Fogel & Barbara Springler, In Honor of Barbara Musco Amount Raised: $38,500 Walkers/Runners: 385 Primary Volunteers: Kara Peck, Suzanne Craft & Progressive Tool Company, Inc. Debbie Macomber Primary Volunteers: Marc Krieger & Danielle Sack Regional Rheumatology Associates LLP Fusco, Brandenstein & Rada P.C. Nancy Sumner The George Group, Merrill Lynch Greebel & Greebel Person raising the most money: Noelle Piotrowski Person raising the most money: Kara Peck Visions Federal Credit Union Greg Selg, Financial Advisor Team with the most members: Team Ginny, Team Will, Team raising the most money: Team Christine Yamazen, Inc. Hand Surgery Center, Beth Israel Medical Center Team Jeanine, Team Joanne, Rosie We Care, For Carol Team with the most members: Team Nina Hellma USA Photographers: Beth Krieger & Ira Deutchman Photographers: Jocelyn Bailey & Alyssa Micha IGG America Teams: Teams: J Hubner LLC Amy’s Army Carole’s Crusaders Key Computing Buffalo CARLSON4 Miles for Marie Land Baron Abstract Company, Inc. Connie Selleck Nancy’s Nomads Scleroderma & Raynauds Treatment Center of the North Shore LIJ June 15, 2013 Ellen’s Angels Snail Health System Fr. Justin Council, Knights of Columbus, For Carol Team Christine Telephonics Corp. Cheektowaga, NY Fossils Team Dawn Turan Family Foundation Amount Raised: $12,500 Walkers: 150 Jumping Judy Team Gigi Primary Volunteers: Lisa Fazio-Beeson, Tom Fazio, KRIEGER Team Janine Natalie 2013 Elle Musialowski Team Karen Rockland Warriors Team Lee Person raising the most money: Noreen & Albert Platten Manhattan Rosie We Care Team Nina Team raising the most money: Kathy’s Krew June 9, 2013 Savino All Stars Team Sue Team with the most members: Kathy’s Krew Riverside Park, New York, NY Team Arabella Team Sutton Photographer: Shelly Adams Amount Raised: $58,500 Walkers: 350 Team Ginny Touron Team Jeanine Teams: Corporate Sponsors: Primary Volunteers: Lindsay Cowan & Olga Cassarella Team Joanne Anne’s Gang POMCO Group Person raising the most money: Stacy Barron Team Juice Beverly Ten Count Farm Team raising the most money: Sattyn & Her Angels Team Lockwood Deidres Divas TEAM LORETTA Henry Team with the most members: Arcuri Hoopsters Team Mary Ann Kathy’s Krew Photographers: Jeffrey Toromoreno, Ann Bommarito, Chris Team Nitti Merna May’s Marchers Flynn, Olga Casarella & Jay Peak Team Noelle Peters for a Cure ThankStepping Out To Cure Scleroderma You Tri-State Everyone Chapter 2013 We came together to celebrate, to remember, to support and for lots of other reasons; we are much stronger when we work together. While Tri-State’s 2013 Stepping Out to Cure Scleroderma events came together through the outstanding efforts of local volunteers, it what we did together that will make the biggest impact. Thank you for your efforts, your donations, your energy and most of all the hope that you shared. Together we made a difference. Together we will continue to make a difference.

I Love Kay