scleroderma exchange - Scleroderma Foundation

SCLERODERMA
EXCHANGE
Volume 2, 2013
www.SclerodermaTriState.org
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Published by Scleroderma Foundation/Tri-State, Inc. Chapter
Binghamton, New York
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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: [email protected]
www.SclerodermaTriState.org
If we have inadvertently omitted or misspelled
your name, please let us know by calling
(800) 867-0885.
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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 ([email protected])
Rosemary Markoff ([email protected])
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
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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:
[email protected] 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______________________________________________________________________
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State_________________________________ Zip_ ______ Phone _____________________
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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!!
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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.