SCLERODERMA EXCHANGE Volume 2, 2013 www.SclerodermaTriState.org M I S S I O Published by Scleroderma Foundation/Tri-State, Inc. Chapter Binghamton, New York 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 New Support Groups! Natalie Puccio has been a longtime volunteer for our Chapter. She has been involved in our Ridgefield Park Walk, volunteered to coordinate fundraisers and helped out at our educational forums while taking care of herself and her four year old daughter Sofia. Nevertheless, she still wanted to do more and so, the Bergen County, NJ support group was born. Natalie brought in Wanda Reynolds as assistant leader and after two meetings, the ladies feel good about filling a need in their community! Meanwhile, the chapter was discussing a new idea with a leader of the former Hackensack Support Group. The idea of a “virtual” support group started the wheels turning for Mary Beth, Director of Patient Education and Support, and Jan Nitti Gnall, and a new method of support began April 16 called Tri-State Connect. Tri-State Connect is a conference call that anyone can join. By calling in at the appointed time, attendees will be introduced to a guest speaker who will join the call for a half hour. They will take questions and listen to concerns. The benefits for attendees might be more support between other meetings in their area or to access for those who are isolated or unable to travel. Meetings are scheduled for once a month on the third Tuesday. Recordings of previous meetings will be available on the Scleroderma Tri-State Chapter Resource page. For additional information visit Connect.SclerodermaTriState.org. We are very grateful for the efforts of Jan, Wanda and Natalie as they lead our outreach to serve those in our region! And thank you to all our support group volunteer leaders as well – we appreciate all you do! Look for updates on our new support groups and to welcome new group leaders in the fall issue of the Scleroderma Exchange! The Times Square billboard. Available to be seen from April 1- June 30, 2013 Scleroderma in Times Square One of the key functions of the Tri-State Chapter is to inform people who don’t know about scleroderma. This spring, we have a chance to do that in one of the most populated areas in the world: Times Square. Through a special program that gives us the use of a digital billboard on 42nd street, we are sharing our message that “if you have scleroderma, you are not alone.” The towering 26 feet x 20 feet (520 square foot) CBS billboard plays a 15 second video to the millions who pass through Times Square. A crowd that includes those attending some of NYC’s largest spring events such as the Tribeca Film Festival and AIDS Walk NY. The billboard is located under the CBS logo above Cold Stone Creamery at 253 W. 42nd Street. The 15 second spot is scheduled to run once an hour starting April 1 through June 30, 2013. Our advertisement puts a face on scleroderma. It shows that the disease affects common, everyday people as well as those in the public eye such as NFL Hall of Famer Barry Sanders and actor Mark Teich. More of their stories and battles with scleroderma can be found in a 10 minute video produced last year that speaks from the patient’s perspective. The video is available on the Tri-State Chapter’s YouTube channel (sftristate). The video and the advertisement are also available to TriState members to share with their communities, local broadcasting stations or those close to you to raise awareness for scleroderma. Call us for details at 800-867-0885. Our hope is that the digital spot will allow people to find the Scleroderma Foundation and take advantage of the resources and help we offer. We want those who have scleroderma, their families, and loved ones to know that they are not alone. 2013 National Patient Education Conference Atlanta, GA July 26th - 28th Visit www.scleroderma.org/conference Scleroderma Foundation Tri-State, Inc. Chapter Founders Mark Flapan, Ph.D. Helene Flapan, M.A. President Jeff Mace Vice President Bruce Cowan Treasurer Rosemary Markoff Secretary June Bender Members Suzy Ballantyne Maryann Caliri Emily Chillino Andrea Goldstein Gerold Kirschner Marc Krieger Estelle Randolph Frederick Shaw Debra Signorelli Patricia Waszmer Joanie Weick Medical & Scientific Advisory Board Co-Chairs Harry Spiera, M.D. Mount Sinai, School of Medicine Robert Spiera, M.D. Hospital for Special Surgery Members 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 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 Executive Director Jay Peak Director of Development & Fundraising Alex Matich Director of Patient Education & Support Mary Beth Bobik-Kadylak Communications Manager Jocelyn Bailey Bookkeeper Karen De Luke 59 Front Street, Binghamton, NY 13905 (800) 867-0885 • fax: (607) 723-2039 email: sdtristate@scleroderma.org www.SclerodermaTriState.org If we have inadvertently omitted or misspelled your name, please let us know by calling (800) 867-0885. 2 A Message from Our Executive Director “Any change, even a change for the better, is always accompanied by drawbacks and discomforts.” -Arnold Bennett The Tri-State staff has faced a number of changes in the first months of the year. The loss of Alex Matich’s wife, then retirement of our long time office manager, Tom Knapp has given us cause to look at life and our business a bit differently. There is most certainly loss and lingering pain; some of it will pass and some will linger for a long time to come. As we join Tom in celebrating his retirement, we also look forward to allowing the new staffers to help as we seek to accomplish the Tri-State mission. Jocelyn Bailey and Karen De Luke are quickly learning the ins and outs of our processes and will soon be adding their unique insights to our operation. While the new realities of our office will be cause for adjustment, we look forward to serving the Tri-State patients, their families and caregivers with new voices and perhaps a little more understanding. Jay Peak Executive Director Tri-State office changes Our Office Manager for the Tri-State Chapter, Thomas Knapp retired as of April 20. Throughout almost to ten years with the chapter, Tom saw his share of change and progress. He and his stories will be greatly missed. As he was leaving we asked him to share a few insights from his time here… Scleroderma Exchange: What change have you seen in the Foundation since you started? TK: When I joined the Tri-State Chapter in 2003, we were a small office with a part-time staff, located in Teaneck, NJ. We had been at this location for the better part of our 20+ years of existence. My first task was to dismantle and move the Tom Knapp office furnishings to our new location in Binghamton, NY. Staff consisted of myself and Executive Director Rosemary Markoff. Our Chapter organized three Walks, produced one newsletter and had two Educational Forums. Now, ten years later we have four full-time, on-site staff members and one part-timer, we produce four “Scleroderma Exchange” newsletters a year, we sponsor eleven Stepping Out To Cure Scleroderma walks and one walk/5K run, and we provided ten Educational Forums in 2012. We have changed and grown substantially in the 2003 – 2013 time frame. Scleroderma Exchange: What do you plan on doing with your retirement? TK: Paula and I plan on traveling the USA to visit family and old friends, as well as see some areas of the country we’ve never visited – the Grand Canyon, Napa Valley and Mount Rushmore to name just a few. Maybe we’ll even take a cruise or two!!! I am an avid reader and enjoy woodworking, and I plan to do a whole lot more of both. New faces in the office Jocelyn Bailey joined the Scleroderma Tri-State Chapter in October of 2012 as the part-time Communications Specialist. She is now taking on many of the office’s administrative functions in addition to managing the majority of our communications in her new full-time role as Communications Manager. Her job now includes day to day office management, writing donor thank you letters, Jocelyn Bailey creating marketing and informational materials, as well as producing the “Scleroderma Exchange”. She will usually be the voice you will hear if you call the office. She is eager to help. Jocelyn is an avid reader and swing dancer. Karen De Luke recently joined the Tri-State Chapter team as our part-time bookkeeper. She brings strong skills and a good understanding of our industry gained from her 13 years of experience at a New York City based non-profit called GrowNYC. In her free time, Karen enjoys cooking and watching old movies with her dad. Karen De Luke With your support remained constant for the past four years, we are losing Stepping Out To Cure Scleroderma is here for 2013 in about a quarter of the previous year’s participants. If twelve locations on six days in June. It is not too late you are one of the missing past participants – PLEASE to register-- online, though the mail, or the day of the COME BACK! If there is a reason why you no longer walk-- and raise much needed funds to help. Albany walk please let us know. We need everyone’s support to be and Rochester celebrate their tenth anniversaries this successful. year. June and Lori in Albany, and Rosa, Marilyn, Diane and Dorothy in Rochester would say that it If you cannot attend this year but still want to help, seems like yesterday when this adventure began. But you can register as a virtual walker (no registration it is only through a lot of hard work from many fee because you will not be at volunteers that the the walk), personalize your We need everyone’s support twelve events across our solicitation page and send your link chapter continue. out around the world. We need to be successful. your support now more than ever. Every year brings both veterans and a new cast If you can attend and have not registered, please go to of walkers and corporate sponsors who together elevate http://walks.SclerodermaTriState.org, check out the the Tri-State Chapter as number one nationwide in Stepping Out To Cure Scleroderma. It is always surprising dates, times and locations and register today. Let’s beat the odds and make 2013 our most successful Stepping when we ask new people, especially the excited ones, Out season ever. where they have been in the past. Most will say they just heard about us. Still after thirty years, it’s good to see new and eager faces join with those who have been with us from the beginning. About 25% of walk participants are new each year. That means that because our number has Scan here to sign up now! Where to Walk to Cure Scleroderma Rochester June 1, 2013 Seneca Park Albany June 2, 2013 Crossgates Mall Binghamton June 2, 2013 Otsiningo Park Long Island June 2, 2013 Wantagh Park Hartford June 8, 2013 West Hartford Reservoir Manhattan June 9,2013 Riverside Park New York, NY Plattsburgh June 9, 2013 Beekmantown Town Hall Park Ridgefield Park June 9, 2013 Overpeck Park Syracuse June 9, 2013 Onondaga Lake Park Buffalo June 15, 2013 K of C Cheektowaga Poughkeepsie June 15, 2013 Vassar College Stamford June 30, 2013 Westhill High School Tri-State is Social Find us on Facebook and Twitter for all the latest updates on the Tri-State Chapter. Share your story. Connect with others. Have fun! 3 2012 - DONATIONS MADE IN MEMORY OF To make a donation in memory or in honor of a loved one please fill out our donation form located on the back page of this newsletter or visit www.SclerodermaTriState.org Mary Ann Abatemarco Filomena Abballe Don Abert Anna Alkinburg Martin Aloof Eugenia Mae Altieri Migdalia Dolly Amadio Debra Anderson Marjorie Anderson-Kassim Frank Arcabascio Christina Atsu Madeline Auer Aunt Rhoda Janet Austin Dawn Axen Penny Baker Dawn Barreca Debra Barron Helene Barrows James Barry, Jr. Florence Bartosch Ruth Becker Connie Becker Margaret Bellano Rochelle Bernhardt Eileen & Marvin Bernstein Sylvia Birnbaum Gizella Blau Connie Bommarito Alesia Bono Sheila Borgese Maureen Brannigan Beverly Britt Harry Brown Barbara Bruno Shoshana Bukai Florence P. Burby Elaine Burke Julia Caccavale Regina Callahan Viola Camerino Jeff Cameron John Cammarata Josephine Campanella Mario Canelon Maureen Carlson Gail Carpe Carol Carpentiere Patrick Francis Caruso Mary Liberata Casagrande Yolanda Casarella-Moreira Claire Cascella Josephine Catanese Marie Cesare Norma Chambers Gloria & Phillip Chernoff Janet Chinelli Nancy Ann Ciccotelli Nicolina Cino Toni Clifford Jane Coddington Debra Cohen Alyce Collier Maureen Collingwood Mary Casagrande Coniglio Kathy Connolly Joan Conte Nancy Cook Shonta Cooper Val Cornell Patricia Cornwell Frank Correia Frances Costanza Josephine Costanza Susan Costello Terrence Costello Patricia Cowan Betsy Crosson Harriett Crystal Jacqueline Cunningham Baron Currie Kenneth Dardes 4 Pamela Davenport Josephine Davi Marie Davies Joseph Henry Decker James Decker, Sr. Debra DeFrancis Dorothy DeKalb Claudia DelGiudice Justine DeNicola Danielle Deribin Louise DeRise Livia Derosa Eileen Deuel Joseph DeVincentis Louise DiLapi Victor DiLeo Mary Dixon James Domini Patricia Donahue Audrey Donovan Roseann Dorrmann Camille Doyle Monica Drake Patricia Dredger Anne Drucker Judith Dubin Lorraine Dunn Margaret “Peggy” Dupee Randy E. Duprey Mary Ann Durand Alan Dutcher Jaggers Edmonson Robert Edmonson Lila Elfant Therese Marie Elford Dawn Erikson Angela Errick Carmen Escovar Rose Evanoff Berna Falkoff Tony Federio Lillian Feliccia Catherine Fell Kay Fenti Maria Ferreira Sally Fielman Migdalia Figueroa Leon Fine Maria Fiocca Steven Fischer Adeline Fischer Beverly Fisher Martha Fisher Sandy Flannery Mark Flapan Joseph Formale Michelle Foster-Gayle Karen Fraley Doreen Friedkin Evelyn Friedman Robert Fuller Esther Gallo Gail Gardner Rose Genna Alberta Gentile Rose Germano Russell Gibbs Richard Gibson Jane Gilliam Ruth Gluck Shirley Godreau Marion Goeller Eleanore Goldberg Barbara Goldman Catherine Gorgoni Ruth Gouck Bea Graham Anna Gralla Susan Grant Lena Graziano Robert & Barbara Greenburg Selma Greifinger Antonia Guagenti Thomas Guidone Rita Gutierrez Florence R. Haar Nancy Hammond Jean D. Handelong Roy Hargrove Darla Sue Hayner Marjorie Hazen Jane Hazzard Lee Heaviside Elizabeth Hebborn Illene Hebert Ann Henrich Laura Henry Michael G. Henry, Sr. Vincent Herring Karen L. Hidgins Karen Hodgins Mildred Horowitz Verna Horowitz Wanda Hosten Elizabeth Houston Mary F. Huggins Raymond Hull Doris Idonesi Mineko Imamura Frank Indelicato Amy Inove Sylvestro Iommazzo Mary Iorio Robert Ives Jacque Jennett Cherie Jones Lisa Kahan Constance Kamens Linda Kane Deborah Kania Diane M. Karas Mark Katz Lisa L. Keating Joan Kelley Susan King Eleanor Klearman Norma Kolbe Ray Konareski Lucille Konstandaras Joan Kroutil Eileen Krystoff Jessie Krystofinski William Kurlanchick Barbara Kwiatkowski Theresa LaChance-Fox Helen Lacoss Beverly Ladd Marie Langone Roberta Lazaro Susan Lazuk Cynthia LeBlanc Stephen Lebo Marvin Lembark Joseph B. Leone Sonia Lepe Ruth Anne Leszczynski Ann Levitt Deborah Ann Lewis Joy Libroia Patricia Linden Linda & Scott Lindner Xinyue Liu Charles Lobosco Betty Lockwood Angela Longa Ellen Longvall Bette Lowen Bill Lupold Judy Lynch Cheryl Lytle Jearl Mahon Jeanette Malanowski Sue Manchester Carmela Mangillo Mary Manillo Barbara Manuzella Carmela Margagliotta Hannah Margulies Ruthanne Mariano John Marini Gloria Marotta Martha Marquez Lynn Marston Brown Kathleen M. Martinez Marion Massey Kevin Massey Jeannette Matarazzo Jean Matula Melanie Mavrides Fredric Mazza Ann McCoy Ruth McCoy Evelyn McEniry Chloe McFarland Kathlyn McFarland Virginia McGhie Mitzi C. McGinnis Laura McGuire-Weinfeld Debra McKernan Brenda McLaughlin Joseph Patrick McNally Joe Meaney Carolanne Melia Christine M. Metz Mindy Micucci Anna E. Miglietta Dick Millstone Angele Miralles Joseph R. Miro Mary Alice Mitchell Carol Molinaro Carmela Mongillo Margaret Mooney Maureen A. Moore Wendy Joan Moore Julie Mooso Mike Morgan John P. Morini Suzanne Moyer Mary M. Mucci Deborah Murphy Carol Murray Anna Neddo Davida Needleman Tien Van Nguyen Valerie Niles Lavannie Niles Cindy Eade Nolen Connie O. Peggy O’Connor Eileen O’Donnell Thomas M. O’Gorman Margaret Oliverie Diana Ortiz Connie Orza Jean O’Sullivan Antoinette & Larry Panicci Rosemary Pascarella Don Patterson August Pavis Patricia Pearson William (Bill) Pellegrini Aracelly Perez Joann Pero Mortimer H. Perr J. Christopher Perry Vita Personte Connie Peterman Annette Phelps Stanley Phillip Ruth Picchianti Joseph Piegari, Sr. Dencil Pilchard Aggie Pizzigati Beverly Pizzuto Gayle Poklemba Susan Pomerantz Elaine Postma Antoinette Proto Maureen Prouty Linda Prudente Vincenza Puccio Steven F. Putnam Rosalia Quartara Umberto Quattroche Edward Quinn William Quinn Liliane McGuffie Quinones Joan “Nanny” Rafferty Luigi Ragusa Debra Perri Rainey Lynn & Bob Rasmussen Mary Anne Rayhab Lucian Re Judith Reddings Lydia Rhodes Patricia Riccobene Angel Rivera Jill Roberts Sandy Robinson Marianne Robotti Marlene “Molly” Rodriguez Diana Roldan Elizabeth Romacho Carol & Jeanette Rosenberg Tim Rosenthal Diane Ross Joanna Rossetti Teresa Rosson Cecilia Rothney Jay Rubenstein Barbara Rubenstein Richard Russo Antoinette Russo Christine Saad Howard Sackstein Maria Salcedo Eric Salva Rose Sanna Antonio Santo John Sargent Roberta Scandiffio Dr. Patrick P. Scarantino Gina Schaffner Steve Schiff Lori Schmidt Barbro Schneider Eleanor Schneider Bette & Meyer Schoenberg Joe Schoenfeld Donald Schorr Arvilla Schrayer Paul Scudiere Connie Selleck James Sessions Dr. Lee Shapiro Kathleen Sherman Toni Shotter Tammy Shultis Sheila Siegal Irving Silverman Joan Simone Martin Singer Michael Slonim Patricia Smith Carol Smith Frances Smith Rhoda G. Solow Ruth Sommer Miriam Soto Sidney Spielvogel Lori Spinelli Linda Stanton Laurel & Paul Starace Ann Steffens Marilyn Stein Eileen Steinhart Avron Steir Natalie Sterzelbach Eleanor Stone Carol Streppel Michael Streppone Terri Sturn Bambi Sucich Aurie-Lynn Sussman Paul Swyer Arlene Taber Ellen Tambone Linda Tarver Chris Taylor John Tedona Shirley Teppo Henry Thomas Margaret Thomson Esther Tipple Nadine Tita Linda V. Torelli Lena Tornabene Donna Toth Julia Trinkle Joseph Truncali Karlene Tucker Margaret (Peggy) Tyburczy Jerome Umano Elsie Upholz Patti Vargas Mary B. Varnum Rosemarie Vasoll Angie Vavala Margaret Vemter Carmela Venditti Margaret Venter Renee Vigorito Carmella Violi William Visner Gregory Visnosky Virginia “Ginny” Volpe Deborah Wallis Joseph Wanamaker Sarah Waters Leslie Weidman Margaret (Peggy) Weisberger Pearl Weiss Marjorie Hook Welch Susan Wells Joan Whelan Marie White Kathleen Wicnienski Mary Williams Sandra Williams-Wayman Susan Lee Wilson Debra Ann Worthy Owen Yellen Paul Robert Zaccaria Dr. Barbara F. Zimmerman Sylvia Zinz Viola Zinzow Other Memorials: 26 Who Perished at Sandy Hook Elementary Shooting All patients that lost their lives to scleroderma All us scleroderma angels All deceased members of HSS Support Group 2012 - DONATIONS MADE IN HONOR OF To make a donation in memory or in honor of a loved one please fill out our donation form located on the back page of this newsletter or visit www.SclerodermaTriState.org Shirley Ackerman Stephanie Myers & Adrian Crockett Angela Rose Andes Sandie Appleton Ben Arcuri James Ard Cheryl Argiros Joy & Jerry Arsenis Danielle Asip Jaber Aslanzadeh Corey Baker Suzy Ballantyne Elayne Barath Nicole Barnash Anthony Barreira Debra Barron Olga Barron Bernice Beagell Alivia Begin June Bender Eileen Bernstein Linda Bibby Diane Biggs Ann Birch Wendy J. Bloch Mary Beth Bobik-Kadylak Alesia Bona Nancy Jane Bonacker Nancy Bono Sheila Borgese Alfreda J. Boykin-Ross Beverly Britt Susan Brotsky Teresa Brown Torey Buckley Christine Caccavale Melissa Cannady Maria Capellan-Abreu Linda Capers-Wheeler Lori Carey Anne Cassidy Josephine Catanese Jackie Celiberti Debra Cernieux Phillip Chernoff Debbie Chicoine Emily Chillino Dennis Chinelli Antonietta Chiocchi Nancy Anne Ciccotelli Beth Cleary Mary Rose & Anthony Colleluori, Esq. Madison Colone Stephanie Concher Mary Contadino Norma Cook Shonta Cooper Scott Cornell Val Cornell Tom Cornell Colleen Costello Pamela Covalli Suzanne M. Craft Sue Craft Teresa Culella-Sun Family Charles Curiazza Angela Cusker Jim Daley Josephine Davi Brenda Davis Courtney Dawson Deborah DeFrancis Roseann DeHaven Dorothy (Dot) Dekalb Jason Delancy Barbara Delli-Carpini Lynda DeRosa Livia DeRosa Liz Devivo Gretchen DiLuca Camille Doyle Susan Drost Varya Du Cormier Susan Duffy Kate Duprey Randy Duprey Nin Eckert Linda Edwards Lisa Egan Demetria Enright Marta Enriquez Audry Eppner Luke Erickson Patrice Erickson Dawn Erikson Carmen Escovar Kimberly Fasano Wendy Trombley Faubert Tony Federio Nadine Fedones Kay Fenti Terry Ferguson Colleen Filiak Steve Fisher Sally R. Flannery Tristan Fraley Cameron Fraley Amy Franze Joanie G. Lauren Garland Arabella Gentile Pat Gerardi Teri Gerson Jan Gnall Debbie Goetz Ellen Goodreau Marissa Gottfried Grady Family Lynn Graham Joyce Greenlee Karen Greenspan Carol Griffith Abigail Hanna Robert & Alicia Haskell Anne J. Hauck Amy Healy Patty Heer Ann Henrich Michael G. Henry, Sr. Patricia Herr Suzi Hornbeck Verna Horowitz Lauren Howard Susan Hughes Anna Hull Francine Hutnik Gail Hutnik Susan Igoe Phyllis Jackson Wendi Jamison Mary Jentzen Janay Joassaint Kitsa Jobeless Rosa Johnson Dawn Johnson Dianne Johnson Lisa Keating William Lee Kimbell Susan King Debi Kloeblen Lorraine Kobernuss Margaret Kollitides Marissa & Sebastyan Kopolovich Mila Yael Kopolovich Randy Kronish LaRae Kuhar Joan Kutniewski Jeanine Labrada Theresa LaChance-Fox Lynda Lackups Manuela Lago Nicole LaMarca-Specht David Lapidus Clauda Lavertu Sharon LeDue Kathleen Leutze Ann Levitt Barbara Linden Bonnie Lindsay Betty Lockwood Ann Lombardi Mary Lou Long Joy LoSchiavo Bette Lowen June Lozewski Bill Lupold Jodi Lynn Carole M. Jeffrey Mace Marianne Mack Mr. Madre Shari Maha Tiese Mahabir Eileen Malack Linda Malatesta Susan Manchester Antonietta Marchetta Hannah Margulies Rosemary Markoff Sandra Martin Kathleen Martinez Doug Mayville Ingrid McConnelly John McDonald Shaleeya McFadden Chloe McFarland Carol McManamon Lisbeth Medina Felicia Melnyk Marlene Mendelson Janice Messina Christine M. Metz Dolores Miller Connie Monroe Maureen Moore Julie Mooso Andrew Mosca Donna Mueller Beatriz Mulesky Irene Mulyca Nancy Munn Carol Murray Barbara Musco Amy Nakano Kim Nellis Lavannie Niles Valerie Niles Joshua Nixon Mary Rose Noonan, CSJ Peggy O’Connor Diana Ortiz Lana Otty Arabella Ovalle-Gentile Dianne Pandolfi Dana Panepinto Suzzane Parras Pam Pasquantino Margaret Paxos JoAnn Pero Lori Pincher Noelle Piotrowski Lisa C. Pittarelli Noreen Platten Bianca Podesta Helen Polenz Gordon Polenz Carol Porcino Natalie Puccio Dr. Donald Raddatz Debra Perri Rainey Susan Ransom Louis & Douglas Renna Wanda M. Reynolds Elizabeth Riley Angel Juice Rivera Heather Rock Martha Rodriguez Marlene “Molly” Rodriguez Beth Rohme Sue Roma Elizabeth Romacho Serena Roman Moira Rooney Shenise O. Ross Renee Rossi Teresa Rosson Myrna Rottman Lori Royalty Crystal Rozelle Jean Ryan Barbara Sadlak Sattyn Salamea Jan Sanders Millie Santoriello Amanda Santos Ruth Saphirstein Loretta Sasso Karen Savino Sue Savino Gina Schaffner Eleanor Schneider Adriane Schorr Catherine Sepe Cheryl Sheridan Karen Sherman Lynn Sindoni Catherine Skehill-Callahan Susan Skolnick Nancy Jean Sokil Marsha Solomon Judy Soltner Miriam Soto Dr. Robert Spiera Lori Spinelli Sharon Sternheim Robert Stone Goetz Strong Nancy Sumner Rebecca Sutton Marjorie Swayne Dr. Taluba’s patients Alana Tancer Debbie Tascone Patricia Taylor The Dawson Scleroderma Foundation Adelaide Thurston Donna Toombs Linda Torelli Lisa Torres Lisa Tortolani Donna Toth Kimberly Touron Bob Truman Susanne Turner Cynthia Valle Mary Vanda Brittany Velez Margaret Venter Lorna Verdone Domenica Viscogliosi Roxanne Vogenitz Virginia Volpe Marian Wagner Patty Waszmer Joanie Weick Arlene Weiss Jill Welch Eileen Welch Glenn T. Williams Sandra Williams Wayman Michael Wojnorich Sandra Wright Margaret Yenter Dorothy Zafonte Viola Zinzow Laura Zoll Other Celebrations: 26 from Connecticut Adelsberg’s 39th Anniversary All Scleroderma patients & families All those who suffer from Scleroderma Charley Kopolovich’s 2nd Birthday Durrer II / Gordon Wedding James Mooney’s 80th Birthday Others with this illness Samantha & Cheri Adelsberg’s Birthdays Scleroderma survivors Shelly & Natalie’s 50th Wedding Anniversary Yvette Strauss’s Birthday Tri-State, Inc. Chapter Because of your generosity, the Scleroderma Tri-State Chapter continues on our mission of Support, Research & Education Your donations are appreciated. June is Scleroderma Awareness Month Top 10 List to Support Scleroderma Awareness Month Awareness starts with you. Supply Materials - Ask your doctors and With the commencement of the 113th Congress in January 2013, we are happy to report that the Scleroderma Research and Awareness Act has been reintroduced in the House of Representatives through the bipartisan efforts of Representative Lois Capps (D- CA) and Representative Peter King (R-NY). The new House Bill is HR 1429. We expect that Senator Kirsten Gillibrand will be reintroducing the Senate version of the bill soon. The legislation asks for an increase in funding for scleroderma research and awareness campaigns. The bill does not seek new money, but requests that a larger allocation of money from the National Institute of Health be channeled into scleroderma research. Contact Media - Get in touch with your We encourage all of you to contact your elected officials and ask them to co-sponsor this legislation. An easy way to do this is to visit the advocacy page of the scleroderma.org website at scleroderma.org/Advocacy. By clicking the “take action now” link, you can automatically generate letters to your elected officials. If you need to find your representative or senator, search by zip code. Talk To Local Officials - Ask them to speak out about scleroderma. Ask that they sign on to legislation that enhances awareness and furthers research to find the cause and cure for scleroderma. other care providers if you can provide brochures or other information for their waiting rooms and for staff. radio and television stations about creating a public service announcement. Pre-made service announcements are available though the Tri-State Office. Get Social - Pass along your story and information though Facebook, Twitter or Email. Even create a video and post it to YouTube. Be Ready- Keep handy some of the business card size information cards or bookmarks that are available through support group leaders and the TriState office. They are a quick way to educate others. We are also happy to report that scleroderma has again been named as a disease eligible for the Department of Defense Peer Reviewed Research Program. Scleroderma researchers have obtained over $10 million in research funding through this program over the past several years. We look forward to researchers again securing some of the $50 million available for research during the next fiscal year. With your help, we will continue to make progress. We encourage you to stay in touch with your elected officials to let them know how valuable their support is to you. As co-chairs of the Scleroderma Foundation Advocacy Program, we welcome any questions or comments. Suzy Ballantyne (sballantyne1@aol.com) Rosemary Markoff (rmarkoff@scleroderma.org) Tell Your Story - Contact your local newspapers and ask them if they have a local column you can submit to or just write a letter to the editor about your journey with scleroderma. Ask community service groups if they are interested in having someone speak at a meeting about scleroderma and educate them on how they can get involved with our organization. Our “Living With Scleroderma” video is a great ice breaker. Be A Host - From a casual brown bag lunch, to a big health fair, always look for a way to spread the word and create awareness. Contact the Tri-State Chapter if you can coordinate an awareness table. Fundraise - Events both large and small are key to our success! From Stepping Out To Cure Scleroderma walks to a local restaurant fundraising nights – every fundraiser helps bring us closer to the cure. Strength in Numbers - Find a support group in your community or consider starting one. There is a need for support and for leaders – we will help every step of the way! 6 Dr. Dinesh Khanna at the Joint Education Forum in Niagara Falls, NY October 2012 Tri-State Education Forums Tri-State has a three fold mission of education, support and research. Each one of these components are addressed through our annual educational opportunities. Planning is still underway, but we have scheduled these events for 2013 already: Scleroderma Educational Forum Hospital For Special Surgery, New York City 4/21 Scleroderma Educational Forum Yale West Campus, Orange, CT 6/22 Caregivers Educational Forum Riverwalk Hotel, Binghamton, NY 8/10 Scleroderma Educational Forum Unity Park Ridge Health Care, Rochester, NY 9/14 Scleroderma Educational Forum Albany College of Pharmacy and Health Sciences Student Center, Albany, NY 9/21 Scleroderma Educational Forum UConn Medical Center, Farmington, CT 10/5 Robert Wood Johnson University Hospital New Brunswick, NJ 10/26 Scleroderma Research Forum Hospital For Special Surgery, New York City 11/16 Ask the Doctor Our guest this edition is Erica Herzog, MD. Dr. Herzog is certified in critical care and pulmonary medicine. She is an Assistant Professor of Pulmonary Medicine, Director of Translational Lung Research, Co-Director of the Yale Fibrosis Program and Assistant Director of Medical Student Research in the Department of Medicine at Yale University. Along with Robert Simms, MD, Dr. Herzog will be a guest speaker at the 2013 Scleroderma Research Forum on November 16 at the Hospital For Special Surgery, NY, NY. Scleroderma Exchange: Can you provide a brief overview of the research you will be presenting at our Research Forum? Dr. Herzog, MD: At this time, our research focuses on the role that inflammatory cells called fibrocytes and macrophages might play in the development and progression of scleroderma related interstitial lung disease (SSc-ILD). Our laboratory has developed several unique methods to explore this question and is at the forefront of discovery in SSc-ILD. At the Scleroderma Research Forum this November, I will share details about the research - where we were, where we are now and how our discoveries will aid those with SSc-ILD in the future. Dr. Herzog spoke at the 2010, CT Education Forum at UConn Medical Center. Her presentation can be found at sclerodermavideo.com Tri- State Chapter Funds “New Investigator Conference” An appreciation of scleroderma and related diseases depends on an increasing number of researchers committing to finding a cause and cure for this disease. To help encourage those investigators already working in the field and others who may be considering the path, the Scleroderma Foundation has put together its first ever “New Investigator Conference”. Knowing the need to continually help talented new investigators get established so they can carry on the traditions and evolve the findings of more senior scleroderma investigators, the Tri-State Chapter became a major sponsor of the conference. Tri-State’s $25,000 donation plus contributions from corporate sponsors gives conference organizers Dr. Carol FeghaliBostwick, Chair of the National Board’s Research Committee, and National Medical Advisory Board Chair Dr. John Varga, the latitude to plan a high quality event. The objective of the conference will be to provide mentorship to new or younger investigators in the medical field starting off in their research job. Each new investigator is asked to prepare a 15 minute presentation on his or her scleroderma related research. After the presentation, there will be a short Q&A and later a panel discussion allowing other researchers to better understand projects and build on their understanding of work that has been accomplished. To date 16 new investigators and 11 mentors have committed to attend. The New Investigator Conference will be Saturday, August 3, 2013 at Boston University; timing and location will allow participating investigators to also attend the International Scleroderma Workshop that begins on that same day. Making the New Investigator Conference a reality is due in part to the hard work and dedication Tri-State’s many volunteers, patients and friends that raise money for our “cause”. You can be encouraged by this important effort which will help develop the next generation of scleroderma research leaders. Scleroderma study notice: Would you like to take part in a scleroderma study? If you have had a right heart catheterization in the past 2 years, you may be interested in a scleroderma study at the Hospital for Special Surgery in New York City. Dr. Elana Bernstein is looking at a new, noninvasive way to test lung function in patients with scleroderma. To learn more, call Dr. Bernstein at (212) 774-2788. Why is your membership so important? Tri-State Chapter membership shows that you’re an active part of the scleroderma family, helping educate, create awareness and search for the cause and cure of this often devastating disease. Here are just a few things your dues help to make happen: •Educational and research forums: An annual line-up of forums across the Tri-State area feature investigators and clinicians providing treatment insights and research updates. Educational programs are free of charge to members and members receive advance notice of all program events. •Local area support group meetings: Our goal is to have support groups that are within an hour’s driving distance of members. Many meetings include speakers of topics of interest. • Scleroderma resource library: Books, articles and DVDs on scleroderma along with our Show everyone your support and advocacy! Visit SclerodermaTriState.org and click on get involved for more information on awareness items. national educational forums are available free to members. • Excellent informational resources: Tri-State’s newsletter, Scleroderma Exchange is published four times per year; SclerodermaTriState.org provides access to an abundance of information about scleroderma resources and chapter happenings; SclerodermaVideo.com provides streaming videos of many of the chapter’s educational forum speakers. • Automatic Scleroderma Foundation national membership: You will also receive all benefits of the Scleroderma Foundation membership including a subscription to the Voice magazine, access to educational awareness programs and a discounted rate to the National Patient Education Conference. 7 Non-Profit Organization US Postage PAID Binghamton, NY Permit No. 21 Tri-State, Inc. Chapter 59 Front Street Binghamton, NY 13905 Have you moved? Changed your phone number or address? Keep our records up-to-date by contacting us with your new information: sdtristate@scleroderma.org or (800) 867-0885. New Tri-State Resource Page Make a Donation. Make a Difference. Donation of $25.00 or more includes membership in both Tri-State Chapter & the national Scleroderma Foundation Name______________________________________________________________________ Email (save postage)___________________________________________________________ Address____________________________________________ City______________________ State_________________________________ Zip_ ______ Phone _____________________ Amount__________________ Checks payable to SF Tri-State | Donate online www.SclerodermaTriState.org (email required) Credit Card (all information required) qVisa qMaster Card qAmerican Express qDiscover Card Number ____________________________________ Security Code_______________ Expiration Date ______________________ E-mail_ _________________________________ Contribution is made: qIn honor of qIn memory of qDues One of the latest additions to the Tri-State website is the Resources page. Find the page by going to: resources.SclerodermaTriState.org. You will find information on support groups or help with finding a physician. You can access our recordings of our patient educational forums 24/7. If you are looking for disability information, clinical trials, how to use the DNA repository and so much more, check it out today!! qDonation(No Membership) Name _ ____________________________________________________________________ Send a note to: Honoree / Family Name______________________________________________________________________ Address_____________________________________________________________________ City____________________________________ State_________ Zip___________________ Email (save postage)___________________________________________________________ Mail to: Scleroderma Foundation/Tri-State, Inc. Chapter 59 Front Street, Binghamton, NY 13905 8 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.