2011 Newsletter Volume 2

SCLERODERMA
EXCHANGE
Walk Edition
Volume 2, 2011
Published by Scleroderma Foundation/Tri-State, Inc. Chapter
Binghamton, New York
www.SclerodermaTriState.org
M
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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 and cure of
scleroderma as well as to improve methods
of treatment
To enhance the public’s awareness of this
disease
Attention
Employees of the U.S. Government (across New York and
Connecticut); State of New
York; Municipal Workers
across New Jersey, City of
New York or the City University of New York, you have
the opportunity to contribute
to the Scleroderma Foundation/Tri-State, Inc Chapter
through your fall employee
workplace campaign (CFC
#38106; NJ ECC #6688;
SEFA # 999 00581; CMC &
CUNY-CVCG #2539). Your
ongoing contribution through
payroll deduction will make a
difference in the lives of many.
Encourage your co-workers to
take advantage of this easy
opportunity to help. A few
dollars a week mount up and
make research, patient support and awareness possible.
The Tri-State Chapter’s 2011 “Stepping
Out to Cure Scleroderma” effort was a
great achievement! It also marked the
tenth anniversary of Tri-State’s first
official walk held in Leonia, NJ at
Overpeck Park.
You, the volunteers, supporters and walkers from throughout Connecticut,
New Jersey and New York, again
showed incredible passion and perseverance to ensure that the walks were
successful. Almost 3,100 of you raised
more than $372,500. You should be
very proud.
A special thank you to Actelion Pharmaceuticals for their Nation-wide gold
level support; Bethpage Federal Credit
Union, again went above and beyond,
remaining a Tri-State Chapter Diamond Sponsor; and Helen Polenz,
commemorating Ann Steffens,
became a Tri-State Chapter Platinum
Sponsor as did Arizona Beverage Co.,
when they made sure that all participants were refreshed with a variety of
great drinks.
Thank you to the many local Corporate
Sponsors detailed inside. This year
corporate sponsor donations totaled
almost $55,000. Aside from the
generous monetary support, there
were hundreds of local companies and
restaurants that donated tens of thousands of dollars in time, products and
services to all of our walks. THANK
YOU!
We hope that you enjoy reading about
all of the people who dedicated their
time and talents to the walks and
viewing the pictures that show all of
the hard work that went into making
these walks an enormous success.
The success of these walks depends on
YOU and we cannot THANK YOU
enough for all of your efforts!
2011 Major Stepping Out to Cure Scleroderma Sponsors
2011 National Gold Sponsor
United
Therapeutics
In Memory of
Ann Steffens
Helen Polenz
Fundraising Events 2010-2011
While our walks are our biggest fundraising events each year, volunteers throughout the Tri-
State area organize fundraisers that contribute to the Chapter as we work to fulfill our mission. We would like to recognize the hard working volunteers who put together some of these
events that took place during 2010-2011. Each was successful in raising funds and awareness
for scleroderma. Thank you for your amazing efforts!
Golf-Less Charity Tournament
The 17th annual Gerry’s Golf-Less Charity Tournament teed
off on April 19, 2011 with the final round commencing on
July 26, 2011. This annual event is organized by Gerold
Kirschner, in memory of Didi Kirchner and Gary & Ellie
Lerner. To date, 35 “golfers” participated in the event
scoring more than $12,800. All of the money donated
goes to pursue Tri-State’s mission of research, education
and support. We would like to thank everyone involved in
making this fundraising event such a success. Thank You
ForbesTraveler.com for the pictures.
Stanifit
Ten Degrees Wine Bar in NYC was home to the 8th Annual Stanifit
on June 22, 2011. The event was organized by Sacha Philips and
her friends in honor of her father, Stan, who lost his battle with
scleroderma in 2004. Drinks, food and fabulous prizes were the
order of the evening as many friends helped raise over $3,100.
Thank you to Sacha and all that helped this effort to raise awareness and funds for scleroderma.
Wine Tasting & Silent Auction
Debbie & Russell Chicoine hosted the Annual Connecticut Scleroderma Wine-Tasting & Silent Auction held on November 12,
2010. Fantastic food, wine and music were enjoyed by the 150 people who gathered at Homewood Suites in Farmington, CT.
Over $5,700 was raised thanks to the hard work of Russell and Debbie and all of the wonderful volunteers. Thanks for making
this an awesome event.
Staten Island Dinner Dance
The Staten Island Dinner Dance organized by Joe and JoAnne Anastasi took place at
Sirico’s in Brooklyn, NY on November 20, 2010. This is the third year that people
gathered together and it was a huge success with 70 people in attendance raising
more than $10,500. As always, it was a great evening with plenty of food, music,
laughter and dancing. Thank you JoAnn and Joe.
Country Coffee Shop Tip Jar & Awareness Nights
Northern NJ support group leader Kitsa Jobeless, her brother John Paxos and father
Andrew Paxos have long been supporters of the Tri-State Chapter. John and
Andrew own the Country Coffee Shop in Mendham, NJ and decided to raise
funds and awareness when Andrew’s wife was diagnosed with scleroderma.
Through the regular presence of a special scleroderma tip jar and Tuesday evening awareness nights during the month of June, they generated over $2,300 in
2010. Great job Kitsa, John & Andrew!
Hartford, CT Dinner Dance
The 19th Annual Hartford, CT Dinner Dance took place on April 30, 2011 at Mt.
Carmel Banquet Hall in East Hartford, CT. It was a wonderful evening of excellent food, music, and much dancing into the late hours of the night. Rosalind
Papaleo, Patricia Castelhano and Ruth Saphirstein did a great job of organizing
this tribute to those battling scleroderma and those who have lost their fight.
Thank you to those who attended and helped raise almost $6,900 and lots of
awareness for scleroderma.
Ridgefield Park
10th Annual Walk
On Sunday, June 5, 2011 the new section of Overpeck Park was host to 358
people who were walking and running to find a cause and cure for scleroderma. Participants raised more than $42,000 as they “Stepped Out” to walk
and run for the cause. It was a beautiful day and a great event. Thank you
to everyone who worked so hard to make this event a great success.
Walk Chairs: Emily Chillino; Danielle & Donna Sack; Betty & John Lockwood
Corporate Sponsors: Costco #231; Cushman & Wakefield of New Jersey, Inc.; D.J. Wolfie Services; Edward
Bayarski / Strategic Wealth Planning; Kwartler Associates, Inc.; Les Enfants Childcare; RMMR; Sea Bridge
Investment Advisors; Tiny Treasures; Whole Foods Market
Teams: Adriane’s Network; ALTER; Amy’s Army; Carlson4; Ellen’s Angels; Goetz Smart; Haggart; Jumping
Judy; Massey; Natalie2011; Natwin; Rosie We Care; Team Arabella; Team Emily; Team Ginny; Team Goe;
Team Juice; Team Lockwood; Team Marion; Team Peggy; Team Sommer
And the Winners are: Adriane Schorr, Adriane’s Network,Team Ginny & Rosie We Care
Binghamton
9th Annual Walk
On June 5, 2011, Otsiningo Park
was the site for another successful “Stepping Out to Cure
Scleroderma” walk. More
than 280 walkers raised over
$27,000 and increased awareness for the scleroderma cause.
Thanks to all that participated
in the walk and to those who
helped organize this great
event.
Walk Chairs: Kate Chura-Lynch; Rosemary Markoff; Carol Porcino; Bob & Linda Truman; Carol McManamon
Corporate Sponsors: A.C. Spear Electric, Inc.; Chobani Greek Yogurt; Crowley Foods; D & L Rental, LLC; Gary’s U
Pull-It; HP Hood; M&T Charitable Foundation; Moe’s Southwest Grill; NBT Bancorp; Pacemaker Steel & Piping Co.,
Inc.; Piaker & Lyons, P.C.; Progressive Tool Company, Inc.; Regional Rheumatology Associates LLP; Visions Federal
Credit Union; Wegmans; Yamazen, Inc.
Teams: Bob’s Babes; Carol McM&M; Connie’s Crew-Saders; Crystal’s Crew; Dysjointed; Fedones; Glenn’s Team;
Grammy’s Walkers; Hubba Chubba; Jill’s Jewels; Porcino’s Pals; Rosy’s Buds; Sue’s Steppers; Team Celiberti; Team
Cooperstown; Team Costello
And the Winners are: Carmen Lopez, Rosy’s Buds
Hartford
9th Annual Walk
On June 11, 2011 more than 250 walkers came together at the West Hartford
Reservoir to raise awareness and over $27,500 for scleroderma. While
rain filled the air it did not dampen the spirits as there were plenty of
fantastic raffle prizes to win, food to eat and people to talk to. Thank you
to everyone who dedicated their time and talents to make this walk a huge
success!
Walk Chairs: Ruth Saphirstein; Karen Legault; Cheryl Argiros
Corporate Sponsors: Construction & General Laborers’ Local Union 230; Hamden Elks Lodge #2224; Happy Hour Heroes; PoliceApp.com; UCONN Health Center
Teams: BJ’s Buds; Bono; Cheryl’s Angels; Carmen Gonzalez; Clauda’s Team; Covalli’s Cruisers; Dawnylou’s Dream
Team; For Carol; Go June Bug!; Mimis Marchers; Team Care For A Cure; Team Carol; Team Doreen; Team Shennen; The
Ya Ya’s; Thomas Shakers
And the Winners are: Pamela Covalli, The Ya Ya’s
Long Island
9th Annual Walk
The annual “Stepping Out to Cure Scleroderma” walk
took place at Wantagh Park on June 5, 2011. 600 walkers raised more than $87,500 to help find a cause and
cure for scleroderma. Great job Long Island organizers and walkers! Thank you for this fantasic success.
Walk Chairs: Joanie Weick; Patty Waszmer; Barbara Geller
Corporate Sponsors: Bethpage Federal Credit Union; Lescroart Corp; Key Computing; Land Baron Abstract Company,
Inc.; Scleroderma & Raynauds Treatment Center of the North Shore LIJ Health System; Turan Family Foundation; Deb
Fogel; Telephonics Corp.; Advantage Title Agency, Inc.; Citi Bank; IGG America; Debbie Macomber; Advantage Communications; Alpert Group, Morgan Stanley Smith Barney; Atlantic Honda; Barrie E. Bazarsky, Attorney at Law; Creative
Bath; Estée Lauder Companies, Inc.; Ford & Lincoln of Smithtown; Fusco, Brandenstein & Rada P.C.; Glenn Wayne
Bakery; Great White Packaging; Greebel & Greebel; Hellma USA; Justine M. Metz Fund; Long Island Regional Arthritis
& Osteoporosis Care, PC; Nassau County Detectives’ Association; North Patchogue Fire Department; Park Bake Shop;
Philosophy; SMC Foods / McDonalds; Town Bagel; Lex Reporting Service, Inc.
Teams: East Coast Walkers; In Memory of Verna Horowitz; Josephine’s Dancing Angels; Manuela Lago; Ma’s Kids;
Pamela Jamieson; Rohme’N 4 a Cure; Team Bunker; Team Chloe; Team dePalo-Asip; Team Musco; Team Naab; Team
Nichtern; Team Beatrice; TEAM NIMA; Team O’Sullivan; Team Raindrop; Team Sue; Team Verna Mae; The Birthday
Team; Walk, Pray, Love; Waszmer Walkers
And the Winners are: Barbara Musco, Team Musco, Team Raindrop
Albany
8th Annual Walk
The Albany “Stepping Out to Cure Scleroderma” walk took
place at Crossgates Mall on June 12, 2011. Over 220 walkers
raised $35,500 to help find a cause and cure for scleroderma.
Thank you to everyone who dedicated their time and talents
to make this walk successful!
Walk Chairs: Lori Alkinburg; June Bender
Corporate Sponsors: Helen Polenz, In memory of Ann Steffens; AFL-CIO; Capital District Support Group; Crossgates
Mall; DeNooyer Chevrolet, Inc.; Galesi Group / Rotterdam Ventures Inc.; Goldstein Auto Group; Golub Foundation; In
memory of Bob & Lynn Rasmussen; New York State United Teachers; No Name Graphics; Rowlands & Barranca Agency; Sidney & Beatrice Albert Foundation; Sisters of St. Joseph of Corondelet; Summit Appliance; The Center for Rheumatology; Ulster Federal Credit Union
Teams: Anna’s Angels; Demetria’s Friends; Guys and Dolls; In Memory of Viola Zinzow; Joe Meaney; Lauren’s Team;
McLaughlin; Prancer’s Dancers; Suzy’s Team; Team Rafferty; Team Sandy; Team Susan King
And the Winners are: June Bender, In Memory of Viola Zinzow and Joe Meaney
Manhattan
7th Annual Walk
On June 12, 2011, Battery Park was filled with people who were “Stepping Out To Cure Scleroderma”. More than 275 walkers raised over
$45,000 to help find a cause and cure for scleroderma. Everyone who
attended enjoyed great food, prizes and music. Thank you to everyone
who worked so hard to make this day a huge success!
Walk Chairs: Lindsay Cowan; Olga Cassarella
Corporate Sponsors: All Star Beverage; Battery Gardens; Bulgari; Lord & Taylor; Marc Jacobs; Soho Grand Hotel;
Teams: Blue Stork; Dawson Scleroderma Foundation; For Carol; In loving memory of Elizabeth Ramacho; In Loving
Memory of Theresa “Tisa” Chai; Maija’s Marchers; Marion’s Marchers; Pat Scarantino; Peg’s People; Savino’s Sassy
Supporters; Team Beverly; Team Chinelli; Team Connie; Team Cowan; Team Eileen; Team Jean O’Sullivan; Team
Joanne; Team Lola; Team Marcia; Team Skehill; Team Yolanda; Tiese Mahabir; Torey Buckley
And the Winners are: Janet Chinelli, Team Chinelli
Syracuse
7th Annual Walk
On June 12, 2011 more than 170
walkers braved the weather
for “Stepping Out to Cure
Scleroderma”at Onondaga
Lake Park. On a very wet
day, these hearty souls raised
awareness and $11,500 for
scleroderma. There were
plenty of fantastic raffle
prizes to win, food to eat and
people to talk to. Thank you
to everyone who dedicated
their time and talents to make
this walk successful!
Walk Chairs: Kara Peck; Nancy Sumner; Lynn & Jan Heaviside
Corporate Sponsors: Ten Count Farm; POMCO Group; J. Strategies, Inc; Mosaic Associates; Dunkin Donuts; Moe’s
Southwest Grill;
Teams: Macri Unlimited; Nancy’s Nomads; Team Ashlee; Team Christine; Team GiGi; Team Janine; Team Lee; Team
Sutton; Team Touron; Karen Keohane; Team Hart
And the Winners are: Lynne & Jan Heaviside, Team Christine
Stamford
6th Annual Walk
Westhill High School was again
home to Stamford’s “Stepping
Out to Cure Scleroderma”
walk. On June 26, 2011, almost 100 walkers raised over
$16,500 to help find a cause
and cure for scleroderma.
Congratulations Stamford on
a job well done!!!
Walk Chairs: Pat & Pete Gerardi; Angie & Mary Contadino
Corporate Sponsors: Crane Foundation; Columbiettes, St. Augustine Council 41; Patriot National Bank; Accurate Lock
and Hardware Co., Inc.; Accurate Tool & Die; Crystal Rock Water
Teams: Italian Stalions; Janna’s Team; Nonna Donna; Patti Cakes; Robin’s Eggs; Wendy’s Warriors
And the Winners are: Maria Narvaez, Patti Cakes
Rochester
6th Annual Walk
Great food, prizes, music and friends all came together to create a
special atmosphere at the June 4, 2011, “Stepping Out To Cure
Scleroderma Walk” at Seneca Park. With 290 walkers raising
over $44,500, this day a huge success! Thank you to everyone
who worked so hard (and hopefully you stayed mostly dry).
Walk Chairs: Dorothy O’Brien; Rosa Johnson; Marilyn Sibley; Diane Reynolds
Corporate Sponsors: Ginna Nuclear Power Plant; Women In This Together; Constellation Brand, Inc; AMF Dewey Gardens Lanes; Dave’s Sidewalk Café; Kayium Gallery; MVP Health Care; Tantalo Photography
Teams: Abber 2; Chesh Kat; Darling; FAMEous; Fighting Irish; Forever Friends; Gabby’s All Stars; Garland’s Gallop;
Hands to Hair; Hare Raisers; I Love Kay; JoAnne; Peter Hunt; Roxie’s Rascals; Sanchez for Rosa; Sindoni Posse; Suzi’s
Supporters; Team Tielens; Walkers 4 Wanda
And the Winners are: Val Fenti, Hare Raisers
Buffalo
5th Annual Walk
On Saturday, June 11, 2011 Island Park was host to more than 160 walkers who were walking to find a cause
and cure for scleroderma. Participants raised over $10,300 on this day to honor those with scleroderma and
remember those who have lost their battle. While this was the 5th “Stepping Out” walk as a Tri-State Chapter
member, it was the 16th time a walk to benefit scleroderma has been held in the Buffalo area. Thank you to
everyone who worked so hard to make this event a success.
Walk Chairs: Lisa Fazio-Beeson; Matt Turcotte; Tom Fazio
Corporate Sponsors: Great Northern Pizza Kitchen
Teams: Anne Hauck; Kathy’s Krew; Made of Steel; Merna May’s Marchers; Steps For Sandie; Team Heer; Team Tony;
Williamsville North
And the Winners are: Noreen & Albert Platten, Kathy’s Krew
Poughkeepsie
5th Annual Walk
Vassar College was host to 100
people who were walking
to find a cause and cure for
scleroderma. On Saturday,
June 18, participants raised
more than $11,000 for the
“Stepping Out to Cure
Scleroderma” walk. It was a
great day as people gathered
to raise awareness and enjoy
the camaraderie as they made
a difference for the cause.
Thank you to everyone who
worked so hard to make this
event happen.
Walk Chairs: Carolyn & Scott Cornell
Corporate Sponsors: Salute Restaurant; Kingston Nissan
Teams: Kelly Family; Molly’s Angels; Sclerovivors; Team Jodi; Team Terri; Team Val; Walkin for FISH
And the Winners are: Antonietta Chiocchi, Sclerovivors, Team Val
Plattsburgh
3rd Annual Walk
On June 12, 2011 Beekmantown Town
Hall Park was filled with 270 walkers
who came together to raise awareness
and over $13,500 for fight against
scleroderma. There were plenty of
fantastic prizes to win, food to eat and
people to talk to.
Walk Chairs: Kate Duprey; John & Pam Munson; Aimee Demers-Bourgeois; Christine Waters
Corporate Sponsors: Best Buy; Kavanaugh Realty; Murnane Building Contractors; Plattsburgh Roller Derby; Taylor
Rental
Teams: B M School; Best Buy; Kate’s Lakers; King’s Kids; Munson Crew; Perry Girls; RIP RED; The Jess Family; Team
Mooso; The Purcell’s
And the Winners are: Alyssa Waters, RIP RED
Non-Profit Organization
US Postage
PAID
Binghamton, NY
Permit No. 21
59 Front Street
Binghamton, NY 13905-1701
Scleroderma Foundation / Tri-State, Inc. Chapter
Founders
Mark Flapan, Ph.D.
Helene Flapan, M.A.
Board of Directors
President
Jeff Mace
Vice President
Bruce Cowan
Treasurer
Rosemary Markoff
Secretary
June Bender
Members
Maryann Caliri
Emily Chillino
Andrea Goldstein
Gerold Kirschner
Marc Krieger
Estelle Randolph
Debra Signorelli
Patricia Waszmer
Joanie Weick
Staff
Executive Director
Jay Peak
Office Manager
Thomas Knapp
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. Malone, 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
Disclaimer
The Scleroderma Foundation/Tri-State, Inc. Chapter 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 serverity of scleroderma may 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
evaulation and treatment. If we have inadvertently, omitted or
misspelled your name, please call 800-867-0885.
Director of
Development &
Fundraising
Electronic Newsletters
Contact
Sign up for your FREE weekly email newsletter at www.
scleroderma.org For up-to-date information and the latest news
about research, treatments, advocacy efforts, special events
and other activities to raise awareness.
Alex Matich
phone: (800) 867-0885
fax: (607) 723-2039
[email protected]
If you prefer to receive this newsletter electronically and want
to stay abreast of Tri-State activities, please e-mail us at
[email protected] or call 800-867-0885
Visit http://picasaweb.google.com/sdtristate and see thousands
of Stepping Out To Cure Scleroderma 2011 pictures.
Fall 2011 Educational Forums
September 17, 2011 - Albany Educational Fourm
Albany College of Pharmacy and Health Sciences
Albany, NY
11:30 a.m. - 4:00 p.m.
Speakers: Lee Shapiro, M.D.; Mark Pettus, M.D.; Celeste
Freeman, OTR/L,CHT; Jessica Farrell, Pharm.D
September 24, 2011 - Rochester Educational Fourm
University of Rochester Medical Center
Rochester, NY
12:30 p.m. - 4:00 p.m.
Speakers: Andreea Coca, M.D.;
Lawrence Saubermann, M.D.
October 15, 2011 - Delaware Valley / Tri-State Joint
Chapter Forum
Good Shepherd Lutheran Church
Sommerville, NJ
11:30 a.m. - 3:30 p.m.
Speakers: Speaker TBA; Rose Payne, CHHC
November 12, 2011 - Syracuse Educational Forum
St. Joseph’s Hospital Health Care
Syracuse, NY
12:30 p.m. - 4:00 p.m
Speakers: Mary Abdulky, M.D.; Dr. Joseph Camerino;
Speaker TBA
November 19, 2011 - HSS Research Forum
Hospital for Special Surgery
New York, NY
12:30 p.m. - 4:00p.m.
Speakers: Thomas A. Medsger Jr., M.D.;
Edwin Chan, M.D.; Robert Spiera, M.D.
Tri-State Educational Forums are free to attend. Go to
www.SclerodermaTriState.org for speaker line-up and
other information. View videos of speakers from past TriTri-State is on Facebook! Tell your friends
and family to visit our link and like us. This
is a friendly place where people can get
information on fundraisers,
forums and and hold discussions and grow
from one another’s experiences. Check us
out at http://on.fb.me/SclerodermaTriState.
While your are checking out great social sites,
visit the Tri-State YouTube channel...
www.youtube.com/sftristate and see video
presentations of all the Tri-State walks.