2009 Newsletter Volume 3

Scleroderma
Exchange
Vol. 3, 2009
Walk
Edition
Published by Scleroderma Foundation/Tri-State, Inc. Chapter, 59 Front Street, Binghamton, NY 13905
The mission of the Scleroderma Foundation Tri-State, Inc. Chapter is three fold:
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 improve methods of
treatment
To enhance the public’s
awareness of this disease
“Stepping Out to Cure Scleroderma” 2009
It was a roller coaster ride for many walk volunteers, participants and sponsors in
2009. Difficult economic times were put aside and together you raised over
$370,000, continuing to dominate the results for Stepping Out To Cure
Scleroderma across the country. Michigan may have
Barry Sanders and Southern California might have a
movie/TV star or two but we have “EVERYONE
WORKING TOGETHER.” A record setting 3,200
registrants and over 300 volunteers enlivened a
cautious spirit. We welcomed our twelfth walk,
Plattsburgh, New York, and they brought forth over
300 registrants and dozens of volunteers from the
North Country – WOW!
A special THANK YOU to Gilead Pharmaceuticals, Lung RX and Abbott
Laboratories for their generous chapter-wide corporate support. Bethpage
Federal Credit Union, once again, went above and beyond, remaining a Tri-State
Chapter Diamond Sponsor . THANK YOU to the many local Corporate
Sponsors detailed inside. This year’s corporate support topped $60,000. Besides
these very generous monetary supporters, there were hundreds of local sponsors
that donated tens of thousands of dollars in products and services all of which
contributed to the success of Stepping Out To Cure Scleroderma ~ 2009.
We hope you take a moment and peruse this newsletter. Contained herein is the
blood, sweat and tears of hundreds and the smiles of thousands. If you
volunteered on a walk committee and we missed your name we apologize for the omission.
THANK YOU for all your work and ENJOY reviewing success at its finest.
ATTENTION * ATTENTION * ATTENTION
Employees of the U.S. Government (across New York State), 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 # consult your local brochure; 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.
Vol. 3, 2009
Stepping Out to Cure Scleroderma was in full swing on
June 14, 2009 at Onondaga Lake Park. More walkers than last year, 174 walkers total, came
out to enjoy the beautiful day and raised almost $14,000 and an invaluable amount of
awareness for scleroderma. A big THANK YOU goes to Congressman Dan Maffei (pictured
at right) who came out to show his support for scleroderma and speak to the crowd. THANK
YOU Whirlin’ Disc DJ for keeping everyone entertained while they enjoyed
the food, drinks and tons of fabulous raffle items.
Team Lee (pictured at left) was undefeated again this
year by taking home the awards for the team that raised
the most money and the team with the most members. Lynne Heaviside
(pictured at left, top), a Team Lee member, took home the award for the
individual who raised the most money. Great job Team Lee!!! Will they sweep
the awards again next year?
There were 14 new and returning teams this year. The teams that Stepped Out
were Bees In Her Bonnet, Team Ed Quinn, Forever Dawn, Team Henry Hart,
Nancy’s Nomads, Teachers at Genesee High School, Team Christine, Team Janine, Team Joyce, Team Lee, Team Lynn,
Team Rock, Team Shelly and Team Sutton. THANK YOU for joining together to show your support.
Hard economic times did not discourage our valued Corporate Sponsors from showing their support. THANK YOU
POMCO Group, Ten Count Farm, Excellus BlueCross BlueShield, Mosaic Associates and Comfort Window Co., Inc. A
big THANK YOU goes to the dozens of other individuals, organizations and companies that donated food, drinks,
products and services to make the day a big hit - especially that nacho bar from Moe’s Southwest Grill!! YUMMY!
THANK YOU to those who worked behind the scenes to make this walk such a success. The hard working team of
volunteers was led by Kara Sumner and comprised of Scott Barry, Cathy Cooper, Michael Fox, Holli Heaviside, Faith
Heaviside, Caroline Heaviside, Jan Heaviside, Lynne Heaviside, Terry McHugh, Sean Peck, Cathy Quinn-Kay, Todd
Robertson, Warren Robinson, Brenda Schaar, Nancy Sumner, Dallas Sumner, Pete Tulowiecki, Laurie Walker, Sue
Wolken, Dana Zanders and Keith Zanders. THANK YOU to those who worked for months to prepare for the event and
to those who volunteered on the day of the walk. The walk could not have happened without you!
We hope to see you again next year!!!
Page 2
Vol. 3, 2009
On June 28, 2009, the Stamford City Schools rolled out the red carpet for Stepping Out To Cure
Scleroderma. THANK YOU Stamford City Schools! Just to add some new zest, the walk was held at Westhill
High School. The change of location made it possible for 142 walkers to attend the walk. This is the largest
number of walkers ever for Stamford. They gathered together to raise over $27,500 to help stamp out scleroderma.
THANK YOU Mayor Dan Malloy (pictured above, right), who is a candidate for the Governor of Connecticut, and
Tim Abbazia (pictured below, middle), who is on the Board of Finance for Stamford, for supporting Stepping Out
to Cure Scleroderma in Stamford. Tim Abbazia cut the ribbon to signify the start of the walk.
THANK YOU to our dedicated Corporate Sponsors – Eisner, Crane Foundation, Columbiettes - St. Augustine
Council 41, IHOP, Patriot National Bank, AARP of North Stamford, Accurate Lock and Hardware Co., Brescome
Barton Inc. and the Tooher Ferraris Insurance Group. Your continued dedication, especially during these difficult
times, is touching. THANK YOU also to the many sponsors that donated food, drinks and raffle
items.
To our volunteers who brought everything together Pat & Pete Gerardi, Mary & Angie &
Lorenzo Contadino, Dot & Phil Annunziata, Mary Lee Ritchie, Marlana & JR Sabia, Joann
Caesaro, Theresa Contadino, Marion & Bruno Necetara, Joseph Gerardi, Anna Contadino,
Gail & Peter Gerardi, Jodi & Sal DiPreta and Rose Contadino ~ THANK YOU. Without
your untiring efforts this success would not have been possible.
As with all of the other walks, teams make a huge difference. THANK YOU to all
of our teams! Wendy Warriors took home the trophy this year for raising the
most money with over $6,300. The other teams were Briana Wright, Italian
Stallions, Jill's Jewels, Patty Cakes, Robin's Eggs, Team Ciccotelli and Team
Wright. Erik Bloch was presented the award for having raised the most money,
over $3,400. (Winners are pictured on the right).
Next year – more people – more teams – more awareness!
Page 3
Vol. 3, 2009
More teams than ever before paved the way for this year’s Stepping Out To
Cure Scleroderma in Greater Rochester. Over 220 people brought life to
Seneca Park on June 6, 2009 and raised over $25,000 to help end scleroderma. The moment of silence and the annual
balloon launch brought to mind all of those people we know who suffer from or have died from this devastating disease.
For months Dorothy O’Brien, Rosa Johnson and Marilyn Sibley worked with Dottie Belter, Sheree Woody, Martha
Webster, Dottie Brinson –Moss, Latricia Butler, Helen Topol, Lynn & John Sindoni, Anita Cato, Lynette Griffin, John
Sindoni, Kala Rhodes, Lynette Griffin, Bertha & Annie Henderson, Diane
Reynolds, Mike & Sandra Morrison, Nadia Hunt, Deidre Irvine, Ernest Lofton and
Marva Johnson. All of their efforts proved a FANTASTIC volunteer effort as
everything went off without a hitch. THANK YOU to all volunteers!
THANK YOU to Constellation Energy – Ginna Nuclear Power Plant and
Woodcliff Hotel & Spa which were our two Corporate Sponsors this year. Dozens
of sponsors provided gallons of water and dozens of items for our raffles. A special
THANK YOU goes out to Dave's Sidewalk Cafe (on right) for once again
providing a great lunch spread. After six years of catering our walk they definitely
know what we love.
Valentine Fenti (pictured on left) outdid everyone by raising over $4,000
(highest amount ever) and was given the award for this fantastic
achievement. Once again the Hare Raisers (pictured on right)
showed their team strength and took home an award for raising
$6,000 - the most money raised by a team. The fifteen other teams
included Aenon Baptist Church, Ya Ya Sisters, Walkers 4 Wanda,
Finding Mom’s Cure, Forever Friends, Tricia’s Troops, Suzi’s
Supporters, Garland Gallops, Guardian Angels, Sindoni Posse, Murphy
Girls, Hope for the Future, Kay Fenti 2009, Mastin’s Militia and Kreinsen. The teams not only
raised a great deal of money but also raised a heightened spirit and awareness for finding a cause
and cure. THANK YOU
to everyone!!
Page 4
Vol. 3, 2009
Vassar College was a mass of blue when 110 walkers (the most ever)
turned out on Saturday, June 20, 2009 to celebrate Stepping Out To
Cure Scleroderma. This third year showed the fortitude of Team Val
and many new volunteers as it organized its best walk ever. This effort
raised over $12,000 and was once again was a great family affair.
THANK YOU to Carolyn & Scott Cornell, John & Kevin & Michael
Dick, Betsy Gabel, Pat & Steve Samarco, Diane & Jenn Winkler,
Nancy & Robert Cornell, Laura Bonanza, Jim Fisher and Dennis
Rossini for bringing everything together and making it a great day
for everyone. Karen we missed your smiling face this year.
M a r y Rosson, 86, is one of the oldest people in Tri-State Chapter history, and maybe the national effort, to
complete an entire walk. Mary is a cancer survivor and mother of Terri Rosson who died from scleroderma in
2007. Mary you are 86 years young and your spirit moves many to achieve more than they ever thought
possible. THANK YOU Mary.
A special THANK YOU to Vassar Brothers Medical Center, Joey Garlic’s and
Finish Solutions Construction LTD. You helped to make a fantastic difference
and showed that you are part of the community. THANK YOU also to the many
supporters who donated products that made our raffles a
success and kept everyone fed and hydrated.
Congratulations to Scott Cornell for being the individual
who raised the most money ($1,500) and to Molly’s Angels
for stepping up to the plate once again and taking home the
team trophy raising $3,250 (see pictures of winners at right).
Team Val will need to pull out all the stops and try to
wrestle the trophy away next year. Other teams that helped
to make everything possible were Future LPN’s, Maria,
Sclerovivors and Team Terri,
THANK YOU to Vassar College for
allowing Stepping Out To Cure Scleroderma to
happen without a hitch again this year – we even remembered the
signs so no one got lost. Now is the time to spread the word and
continue the fight to make scleroderma a disease of the past!
Page 5
Vol. 3, 2009
The North Country came alive for Stepping Out To Cure Scleroderma on
Sunday, June 14, 2009 at Beekmantown Town Hall Park. Expectations
were high but it is safe to say that nobody expected over 300 people and to
raise over $14,000 – FANTASTIC! The North Country showed its
hometown spirit in memory of Randy Duprey and in honor of Wendy
Faubert and Julie Mooso and others across the country who suffer from or
lost their battle with scleroderma. Let’s find that cure!!
The park bustled with excitement but none of it would have happened if
it weren’t for the event committee of Kate Duprey (wife of Randy pictured with son, Alec, below), John & Pam Munson and
Dan & Shelly Munson and their fantastic crew of
volunteers including Sara Arnold,
Katelyn Carpenter, Dennon Walantus, Olivia Trudeau, Sarah
Stanton, Carrie Coryer, Aimee Demers-Bourgeois, Dave Phillips, Ryan &
Sara Munson, Karen LaRock, Adam & Victoria Felio, Dana Fowler, Paul
& Teri & Ben Frederick, Dan Infantino, Jake & Ashley Garrow, Jordan &
Rick Fuller and of course Alek. THANK YOU to everyone.
of
From the bake sale to the Michigans to the hamburgers to the cookies food and drink was aplenty and everyone left stuffed. Raffles and silent
auctions abounded and smiles and cheers erupted every time a ticket was drawn.
The crowd cheered and got teary eyed when it was announced that Alyssa Waters
(pictured on left), a fourth grader, had raised the most money ($520).
CONGRATULATIONS and THANK YOU to Alyssa for a job well done. THANK
YOU also to Best Buy for its corporate donation and great community spirit in allowing 21
its employees to participate (pictured below, left).
The bands of Shameless Strangers and Applejack Country (pictured below, right) kept everyone rocking from
beginning to end. THANK YOU!
Page 6
Vol. 3, 2009
More than twenty-five teams paved the
way for this year’s Stepping Out To Cure
Scleroderma in Manhattan. Over 275 people gathered together at Riverside park in
New York City on Sunday, June 14, 2009 and raised over $35,000 to help find a cause
and cure for scleroderma. A special THANK YOU to Just Nuts (pictured on right),
this year’s live entertainment. Your music was enjoyed by all and we hope you will
return next year.
THANK YOU to Kristen Murphy, Lindsay Cowan and Zack Walton (committee cochairs) and the entire Manhattan walk committee of Ann Bommaritto, Olga Casarella, Fran Bernstein Roxanna
Chowdhry-Velasquez, Estelle Randolph, Dara Erck, Wangyue Liu, Eric Murphy, Patricia Shada and Maryann Caliri for
their many hours of work over the last seven months. Without your tireless efforts none of this would have been
possible. We are sorry to say goodbye to Kristen because she has been such a driving force in New York City. We wish
her luck and hope that she will return to celebrate walk day with us in the future. THANK YOU to the dozens of
volunteers who rolled up their sleeves and helped out on walk day.
THANK YOU to Zitomer for being our Corporate Sponsor this year. Also a
word of THANKS to the many sponsors that provided food and drink as well as
raffle and silent auction items. You all helped to make Stepping Out To Cure
Scleroderma a great experience for everyone.
Teams – teams – teams as far as the eye could see. Over twenty-five teams
helped to fill the park and they were led by The Murph’s, who won the trophy
for raising the most money ($5,500). Other teams included ABCD, Alice Rajan,
With Love for Virginia Chowdhry, Win for Lynn, All for One, For Carol,
Walking Wonders, Traci’s Trotters, Team Dana, Hope4Rena, Tina’s Team,
Tiese, Infinity, Jane’s Team, Team Ilene, Majas Marchers, Marcia’s Team, Team
Eileen, Team Carol, MATOS, NYC Facebook Walkers, Team Connie, Team Amelia
and SPIRIT. The leader of The Murph’s, Kristen Murphy, won the award for the
person raising the most money. (The Murph’s along with Kristen Murphy are
pictured on the left)
Not only did you raise a great deal of money but you also brought much needed
awareness of scleroderma to Manhattan. THANK YOU to everyone! See you next year!
Page 7
Vol. 3, 2009
FO O D
FAMILY
REM
Page 8
EM
BER
Vol. 3, 2009
FRIENDS
MUSIC
TEAMS
Page 9
Vol. 3, 2009
Once again Long Islanders lead the way for Tri-State by raising over $88,000
and topping last year with over 620 registrants. Tough times called for tough
measures and Wantagh Park rocked on June 7, 2009 for Stepping Out To Cure Scleroderma. Music by Celebrity
Music and the singing of “Hannah Montana” (pictured on bottom, right) kept young, and those not so young, energized.
Barbara Musco was not to be denied! Once again, she earned the award for the
most money raised by an individual (over $21,000) and her team (Team Musco)
took home the trophy for the team raising the most money (see Barbara with Team
Musco at left). Twenty four other teams stepped out in Wantagh Park. They
included the Big E, Buddies for Life, Team for Lorna, Waszmer’s Walkers, Cat’s
Crusaders, the Dynamic Duo, Walking for Jean, Team Verna Mae, East Coast
Walkers, G.B. Herrel, Team Timothy, Team Sue, JJ and the Polka Dots, Killer Bees,
Team Simeone, Team Patricia, Krewe d’ Karleen, Stella’s Hope, Team O’ Sullivan,
Team Chris, Syossett Hospital, Team Bunker and Team Chloe. The team Raindrop
Foundation (pictured at left, top) once again showed its enthusiasm with over 124
registered members. They took home the award for the team with the most members, 2009
was the first year this award was given. CONGRATULATIONS to all teams!
A very SPECIAL THANK YOU to our Corporate Sponsors, who
contributed over $19,000 in this very difficult economic time.
Bethpage Federal Credit Union (pictured at right) exemplified its
strong community commitment and remained our lone Diamond
Sponsor with a $10,000 donation. Twenty other Corporate Sponsors included Advantage
Communications, Turan Family Foundation, Telephonics, Americlean, Baldwin High School Key
Club, SMS Meat Corp, SMC Foods/McDonalds, Birzon-Strange-Bazarsky, Estee Lauder
Companies, North Shore LIJ Health System, North Patchogue Fire Department, Expert Parking,
Gentle Dentle, Nassau County Detectives’ Association, Long Island Regional Arthritis &
Osteoporosis Care, Great White Packaging, Hellma USA, Land Baron Abstract Company, IGG
America and Key Computing.
THANK YOU to all the sponsors that provided gallons of drinks, many different breakfast items and dozens of items
that were raffled off and made the silent auctions possible. WOW!
Joanie Weick, Patty Waszmer and Barbara Geller led the crew of dozens of volunteers for over five months to bring
Stepping Out To Cure Scleroderma ~ 2009 to its exuberant conclusion. THANK
YOU & CONGRATULATIONS belongs to everyone who pitched in months, weeks,
days and hours before everything unfolded. THANK YOU to Dan
Archbold for donating his time and
photographic talents to the walk by
taking an amazing 900+ pictures.
THANK YOU to the Baldwin High
School Key Club members for their
Corporate Sponsorship and coming
out to volunteer on walk day. The
youth are our future and the future
looks bright on Long Island!
Page 10
Vol. 3, 2009
On May 31, 2009, a hush came over the crowd as we gathered to hear Bergen
County Executive Dennis McNerney (pictured at left assisting with the ribbon
cutting) talk about scleroderma and why he was there to participate in Stepping Out
To Cure Scleroderma. Mr. McNerney has been a friend of the Foundation for years,
allowing us to use Overpeck Park and going above and beyond to help us. Over 300
people turned out, had a good time eating, drinking and meeting up with friends, and
helped raise $35,000.
Natalie Murdolo and Emily Chillino led the walk committee of Kristen Litwinka,
Mike Volpe, Donna & Danielle Sack, John & Betty Lockwood and Chris Murdolo for
months in preparation for this day. Plans were thoroughly laid out and everything
went off without a hitch. Even the weather
cooperated - cooler and less windy than last year. THANK YOU to the
committee and dozens of other volunteers that made this possible. THANK YOU
to Judy Sbrocco for helping us stretch properly before the walk.
This year saw six Corporate Sponsors help raise the bar. THANK YOU to
AmSpec, Tiny Treasures, Litwinka & Company, Concrete Construction Corp.,
Doherty Enterprises (Applebee’s) and the Bloomfield PBA. THANK YOU to the
sponsors that provided breakfast food, fresh fruit, water, fruit juice, other
refreshments and many door prizes. THANK YOU to Applebee’s and its
employees (coordinated by Derrick Gagner and Natalie Murdolo) for hosting and
actively participating in our car wash. Your community spirit makes us all proud
and every dollar is important.
Adriane’s Network (pictured at right, top) wowed the crowd when it was
announced that they once again won the trophy for the team that raised the most
money with over $12,800. We saw a new winner for the team with the most
members - Team Ginny (pictured at right, bottom) took the award with its 34
members this year. Other teams included Amy’s Army, Team Peggy, Team
Lockwood, Arabella, Calson4, Team Emily, Super Troopers 09, Ellen’s Angels,
Jumping Judy, Roseanne’s team, Pat’s People, Massey, McLaughlin 09 and Mrs. New Jersey. Lest we forget, Adriane
Schorr pulled out all of the stops and raised $9,000 to take the award for the individual raising the most money –
CONGRATULATIONS and THANK
YOU Adriane!
Page 11
Vol. 3, 2009
WOW is the best word to describe Stepping Out To Cure Scleroderma
~ 2009 in Hartford. Saturday, June 13, 2009 saw the best weather in our
six year history, more people than ever before (235 walkers) and our greatest total ever (over $26,500). New teams
(more than ever before), a new site at the West Hartford Reservoir and a great spirit made the event unforgettable.
THANK YOU Tommy O & Slim Tempo (below, right) for the great music that kept everyone hopping and to Rocky
(below, left), the New Britain Rock Cats mascot, for helping to make this event a grand slam! WOW!
The Ya-Ya’s, one of our new teams, accepted the challenge and took home the trophy
for raising $4,800, the most money collected by a team. One of its team leaders,
Michelle Pandolfi, took home the award for the individual who raised the most
money. (See the Ya-Ya’s with Michelle Pandolfi in the picture at left). Other
teams that helped to raise us to new heights
w e r e
Alyce’s Angels, Thomas Shakers, Clauda’s
Team, Joan’s Jaunters, The Cella
Connection, The CB Clan, Team June Bug,
Mimi’s
Marchers, The Cave Crusaders, Team Val (from
Poughkeepsie), Potter Works, Procrastinators, Team Shennen, Team Doreen
2009 and Cheryl’s Angels. Cheryl’s Angels (picture on right) was the team
with the largest contingent with 44 members. THANK YOU to everyone for a
grand turnout.
We also secured more Corporate Sponsors than ever before with the University of Connecticut Health Center, Anthem
BlueCross BlueShield, Kaman Aerospace, Be-Secure Technologies, Shady Glen Dairy Stores, PoliceApp.com,
Construction & General Laborers’ Local 230, New-Luv.com and Custom Labs Technologies all helping to further the
cause. THANK YOU for your generosity, especially during these rough economic times. Over thirty sponsors provided
items and services that were raffled off and included in the silent auction. These sponsors also contributed food and
drinks for our walkers. THANK YOU for your generous support!
This was the best Greater Hartford walk ever and it was possible because of the strength and fortitude of our volunteers!
Our volunteer crew of Shirley Ackerman, Dawn Trykowski, Liz Steed, Cheryl Argiros, Claudia Belisle, Susan & Joyce
Manchester, Karen Legault, Christine Cassidy, Debbie & Russell Chicoine, Cathy Kay, Nighat “Gidget” Hussain, Lea
Collins, Brenda Davis and Marsha Dowling spent months putting everything together under the leadership of Ruth
Saphirstein. THANK YOU for a super job!
Page 12
Vol. 3, 2009
Stepping Out To Cure Scleroderma in Buffalo is
undergoing its second transformation in the past
three years with a total change of the guard. It is
the Tri-State Chapter’s longest running walk, dating back to 1992, and
changing annually. On Saturday, June 13, 2009 over 180 people came to
Island Park to celebrate life and help the cause. They came together and
raised $11,500 in honor and memory of many people but all for the
common cause of ending scleroderma.
THANK YOU to Lisa Fazio-Beeson, Matt Turcotte and Tom Fazio for taking charge and pulling together the
great team of Shelly Adams, Lisa & Jim Thorpe, Liane Agro, Midge Andruschat, Bob & Carol Smith, Annette
& Kristen & Lauren Pundt, Connie & Bob Draper, Philisa & Tom Fazio, Renee & Al Platten, Chuck & Jeanne
Palmeri, Prudy Fazio, Prudy & Tony Federio, Jennifer Moore, Marge & Norm Miller, Joe & Maria & Tony &
Adria & Alyssa Federio, David & Patricia & Kristen Heer, Ellen & Kathleen Leutze and Ann & Ray Houck
who spent months making Stepping Out To Cure Scleroderma happen.
Team Tony led the team challenge raising the most money and five others
(Annie’s Team, Kathy’s Krew, Merna May’s Marchers, Team Heer and
Team Woodward) were all close behind – THANK YOU to all of you.
The challenge goes on for 2010. Anthony Federio was presented with the
award as the individual raising the most money. THANK YOU to Youth
Leadership 2009 (pictured below, right) for coming out to personally help
guarantee success. The youth are alive and well in Western New York.
THANK YOU to the Future Business Leaders of America – Phi Beta
Lambda Chapter and Alden State Bank for being Corporate Sponsors, especially in this troubled economy.
THANK YOU to the sponsors that provided food, drinks and the items included as part of the many raffles.
Special Recognition to Music In Motion for once again keeping us entertained.
Page 13
Vol. 3, 2009
Stepping Out to Cure Scleroderma took place in Binghamton, NY on June 6, 2009 at Otsiningo
Park. Over 400 walkers took to the scenic walking path and raised over
$39,000. Tanya from WILD-104 kept everyone moving and grooving and
Max, the Binghamton Senator’s mascot, came to meet and greet our walkers.
THANK YOU Tanya and Max (at right) for making the day more enjoyable.
Maurice Hinchey was unable to attend the walk as originally planned but a
representative from his office stopped by to convey the Congressman’s support
for the fight against scleroderma.
A special moment was taken to honor and thank Rosemary Markoff (at left with Bruce Cowan)
for her many years of hard work and dedication as the Executive Director of the Tri-State
Chapter. Although Rosemary is no longer the Executive Director, she still volunteers her time
and talents to the advocacy committee. Thank you Rose for all that you have done and continue
to do!
Committee leaders Rosemary Markoff, Carol Porcino, Farah Russell, Bob Truman and Kate
Chura-Lynch worked hard for months prior to the big day but our volunteers are what made
this well oiled machine run so smoothly. The volunteer roster for 2009 was comprised of Lynn
Breiten, Pat Chura, Sandra Cohn, Liz DeVivo, Dan Erickson, Nadine Fedones, The Fisher Family, The Flynn
Family, Gail Gerchman, Gary Hmurcik, Tom Knapp, Rich Lynch, Eileen Malack, Ron Markoff, Eryn Matich, Carol &
Kyle McManamon, Neva Miller, Jen & Kevin Mower, Marty & Matt Porcino, Sue Roma, Mercedes Russell, Mike
Senisi, Tony Stenta, Linda Truman and Mahlon Winkleblech. A big THANK YOU goes out to all of these hard
working volunteers. From set up to tear down and everything in between you all did a great job!!
THANK YOU to the many generous Corporate Sponsors: A.C. Spear Electric, Crowley Foods, D & L Rental, Gary’s U
Pull-It, Greater Binghamton Association of Realtors, J.C. Printing, M&T Charitable Foundation, NBT Bancorp,
Pacemaker Steel & Piping, Piaker & Lyons, Progressive Tool Company, Tall Pines Farm, Veterinary Medical Center
and Visions Federal Credit Union. WOW!! A big THANK YOU also goes out to the sponsors that donated products
and services used at the walk. We couldn’t have had such a successful walk
without the generosity of all these sponsors.
Awards were given out for the individual who raised the most money (Heather
Tielens), the team that rasied the most money (Rosy’s Buds) and the team with the
most members (Team Luke) - all pictured at right.
Teamwork is the key to fighting scleroderma and this year
there were 20 teams that banded together to do just that.
These teams included Angels of Light, Bob’s Babes, Boo
Boo Bears, Celiberti Clan, Connie’s Crusaders,
Cooperstown in Memory of Jane, Friends of Trevor,
Grammy’s Walkers, In Memory of Sally, Jill’s Jewels, Liz’s
Team, Mc M&M, Porcino’s Pals, Rosy’s Buds, Sue’s
Steppers, Team Costello, Team Fedones, Team Luke, Team
Rossi and Team Tielens.
THANK YOU….THANK YOU….THANK YOU to
everyone who helped make this walk such a success!!
Page 14
Vol. 3, 2009
A new venue, day and time made for an interesting evening. Stepping Out To Cure Scleroderma ~ Albany broadened
its scope and headed for the Crossgates Mall on Sunday June 7, 2009. It began at 6:30 pm with registration and was
still going strong at 8:30 pm. The food court was rocking with music and conversation and Subway
provided the food. Over 300 people enjoyed themselves and helped raise over $40,000.
Team Susan King took home the trophy for the most money raised by a team. The other
teams included Amy’s Hope for the Future, Team Zinzow, Team Wheeler, Anna’s Angels,
Team Sandy, Team King, Charlotte’s Angels, Friends of Judy Rucinski, Team Anne, SWAC,
Irene, Katie’s Kids, Prancer’s Dancers, Phyllis’ Team, Laura, Mary’s Angels,
Nixon’s Blue Streaks and Millora. The Center for Rheumatology
garnered the award for the team with the most members and
Clarinda Robin (team Millora) won the award for the most money
raised by an individual. See the winners pictured at right.
June Bender led a group of over thirty volunteers that made this
event a reality. THANK YOU to Alison Aber, Lori & Don
Alkinburg, Ed & Rick Bender, Jennifer Blackstone-Hoffman, Noreen
Boyd, Oshemah Carrington, Dot Dekalb, Lynette Gorham, Stas Kondraki,
Maria & Cierra & Kevin Lawton, Eileen Lemley, Lisa & Joe Meany, Marlene &
R i c h
Mendelson, Mary Myers, Denise & Mark Palatsky, Cindy Pitts, The Keane Family, Helen Polenz, Stacey Pulk, Nancy
& Mike Sokil, John Sterling, the Turner Family and Jody Wheeler. You all ROCK – THANK YOU.
Special THANK YOU to our very generous Corporate Sponsors. Together they contributed over $14,500: Wal-Mart,
Abbott Laboratories, Albany County Deputy Sheriff’s PBA, Valois of America, Ulster Federal Credit Union, C.
Callahan Agency, Capital District Support Group, The Center for Rheumatology, Summit Appliance, Carrow Real
Estate Services, Galesi Group/Rotterdam Ventures Inc., Sisters of St. Joseph of Carondolet, Sidney and Beatrice Albert
Foundation, Helen Polenz in Memory of Ann Steffens, Mowhawk Fine Papers, Robinson’s ACE Hardware,
Presbyterian New England Congregational Church and New York State United Teachers.
THANK YOU to over forty sponsors that provided other refreshments and the items and services that were raffled off,
placed in goodie bags and in the silent auction.
Lastly, a GIGANTIC THANK YOU to the Crossgates Mall for allowing us to bring our event inside and avoid the
weather. This was a pioneer event for us (and Tri-State) and may open the door to further events in other malls.
Page 15
Vol. 3, 2009
Founders
Mark Flapan, PhD
Helene Flapan, MA
President
Jeff Mace
Vice President
Bruce Cowan
Treasurer
Robert B. Rasmussen
Members
Patrick Borgen, MD
Maryann Caliri
Andrea Goldstein
Gerold Kirschner
Estelle Randolph
Debra Signorelli
Patricia Waszmer
Joanie Weick
Advocacy Committee
Rosemary Markoff
Medical & Scientific Advisory Board
Co-Chairs:
Harry Spiera, MD
Mount Sinai, School of Medicine
Robert Spiera, MD
Hospital for Special Surgery
Members
Avram Goldberg, MD
Scleroderma & Raynauds Treatment Center
North Shore-Long Island Jewish
Health System
Barry L. Gruber, MD
Long Island Regional Arthritis &
Osteoporosis Care, PC
Maria Luisa Padilla, MD
Mount Sinai, School of Medicine
Naomi F. Rothfield, MD
University of Connecticut,
School of Medicine
Lee S. Shapiro, MD
The Center for Rheumatology
Newsletter Editor
Kate Chura-Lynch
Phone: (607) 723-2239
Toll-free: (800) 867-0885
Fax: (607) 723-2039
E-mail: [email protected]
Scleroderma Foundation/Tri-State, Inc. Chapter
59 Front Street, Binghamton, NY 13905
Benefactor……$1,000*
Patron………….$500*
Sponsor………$250
Supporter……...$50
Contributor……$30
Donor………...$100
*Founders Circle $500 or more
Name __________________________________ Phone ( ____ ) ___________________
(Print as you wish it to appear in public acknowledgements.)
Do not list my name in the Annual Report. Email:_________________________
Address ________________________________________________________________
City _________________________________________ State ________ Zip _________
All contributions of $25 or more include annual membership dues
for BOTH Tri-State and National SF.
Please renew my membership, $25 per year.
Please enroll me as a new member of the Scleroderma Foundation, $25 a year.
I do not need membership benefits but I would like my contribution to help support
your work
Enclosed is my/our matching gift forms(s).
This contribution is made
in honor of
in memory of
is a membership gift for:
Name _________________________________________________________________
Send a note indicating that a contribution has been made to:
Name _________________________________________________________________
Address ________________________________________________________________
City _________________________________________ State ________ Zip _________
Please make your check payable to: SF Tri-State.
Check your mailboxes for raffle
tickets soon. Raffle drawings will
take place at the Fall Educational
Forum on November 15th at the
Hospital for Special Surgery in New
York, NY. For more information,
call (800) 867-0885.
Non-Profit Org.
US POSTAGE PAID
Permit No. 21
Tri-State, Inc. Chapter
59 Front Street
Binghamton, NY 13905-4701
Page 16