the president`s - Scleroderma Foundation

Transcription

the president`s - Scleroderma Foundation
The
Pursuit
Support
Education
THE PRESIDENT’S
NEWSLETTER OF THE SCLERODERMA FOUNDATION ~ DELAWARE VALLEY CHAPTER
S
Team Scleroderma Marches in the 2010 IKEA
Thanksgiving Day Parade in Philadelphia
upporters of the SFDV were transformed into elves and reindeer in order
to carry the Toy Train balloon in the 2010 Ikea Thanksgiving Parade in
Philadelphia. Neither the cold, rain, snow, nor 6 AM start time deterred
Team Scleroderma from getting the job done, or from having a great time
doing it.
Thank you Maddy Quarto and John Rudolph for organizing this event and to
our Thanksgiving Parade team – Charlotte Clark, Wendy Ferguson, Theresa
Behan, and Yolanda and Christopher Small from Eastern High School in
Voorhees, NJ.
Sign ups for the 2011 parade are
already in progress. Contact the
SFDV office at 866-675-5545 if you
would like to participate in 2011.
Autoimmunity Center of
Excellence - Thomas Jefferson
University Hospital
The National Institute of Allergy and
Infectious Diseases (NIAD) has awarded a multi-million dollar grant to
Jefferson University Hospital as one of
nine Autoimmunity Centers of
Excellence (ACE) across the nation
(www.autoimmunitycenters.org) The
Parading Scleroderma Awareness
purpose of these centers is to bring
on the Fourth of July!!
together basic scientists and clinicians
to evaluate the safety and efficacy of
cutting edge treatment strategies for autoimmune diseases. Dr. Sergio
Jimenez, Associate Director of the Jefferson ACE, will be conducting
the clinical and research studies on scleroderma. Stay tuned for more
information in 2011.
Research
T
December 2010
Bit
he Board of Directors participated in our annual planning meeting in December to consider our activities for 2011 and our
goals looking forward into the next 3-5 years. In doing this, we
reflected on our current activities and how they met the needs of our
foundation members. Suggestions are always appreciated. Each
year as we look at all we have done, I am thankful for the board
members and the many that volunteer their time to our organization
and make these activities happen!
A recap of our activities in 2010 highlights the efforts toward
supporting our mission and serving the scleroderma community:
January – Annual Appeal, Community Day at GlaxoSmithKline,
Pursuit newsletter
February – Lamberti’s restaurant fundraiser
March – Scrapping for Scleroderma, Education Conference
May – Delaware Run/Walk, Tyler Park Health Fair
June – Shore Walk, MacCutcheon/Lacy Golf Tournament,
Community Day at GlaxoSmithKline, Pursuit newsletter
July – Phillies baseball game for awareness, radio interview in
York, PA to promote awareness and upcoming walk
August – York Walk, 215 Golf Tournament
September – Holy Family University Health Fair, Camden
County Women’s Health Conference, Teri’s Run, PECO Lights
October – Philadelphia Walk, Education Conference with
Tri-State Chapter, Cable TV interview for awareness
November – Thanksgiving Day parade
December – Planning meeting for 2011, Pursuit newsletter
A special thank you to those individuals in the community who
initiated and successfully held fundraising events to benefit the
Scleroderma Foundation in 2010: MacCutcheon/Lacy Golf Outing,
Scrapping for Scleroderma, 215 Golf Tournament and Teri’s Run.
Most of these have become annual events and contribute immensely
to our awareness and fundraising efforts.
The Delaware Valley Chapter is responsible for imparting the
mission of the National Scleroderma Foundation in southern and
central NJ, eastern and central PA, and Delaware. We are the only
active chapter in this area and are based in Cherry Hill, NJ. Our
chapter manages 12 support groups throughout this designated area
and a weekly e-mail support group that has approximately 40 members. Our Foundation staff, Chris Gaydos, Colleen Ferara, and
Nancy Aichholzer bring heart and proficiency to our operations
throughout the year. They are in the office Monday through Friday
to service our members. If you haven’t done so, give them a call
and introduce yourself.
The Scleroderma Foundation Delaware Valley Board of
Directors seeks new members in an ongoing fashion. Most all of us
have had or have a personal connection with someone afflicted with
scleroderma, although that is not necessary to join our Board.
Individuals constituting a variety of work experiences and backgrounds are desirable for Chapter growth. Everyone has an attribute
that can add to the versatility of the Board. We feel a great deal of
satisfaction from our contribution as board members and have
established long-lasting friendships as a result. Please contact us at
1-866-675-5545 or 856-779-7225 for any interest you may have to
become part of our Board.
Respectfully submitted: Susan Pierce, President Scleroderma
Foundation Delaware Valley Chapter
Golf News
Bruce MacCutcheon Marilyn Lacy Memorial Golf Classic
The Annual Bruce MacCutcheon Marilyn Lacy Memorial Golf Classic was held on June 14, 2010, at Rossmoor Country Club in
Monroe Township, NJ. The MacCutcheon and Lacy families have been holding this tournament for over 10 years in memory of their
father and mother, Bruce and Marilyn, who were both lost to scleroderma. The support and generosity of their friends and family
who come out every year has been remarkable this year netting approximately $13,000 to the SFDV.
The SFDV is extremely grateful to everyone involved with the MacCutcheon Lacy Golf Classic and thankful for their continued support.
York Walk 2010
O
n August 14, 2010, 170 walkers came out to John Rudy Park in York, PA, to participate in the 6th Annual “Stepping Out To Cure
Scleroderma” Walk.
All those who participated received t-shirts and enjoyed a
post-walk barbeque. Our raffle prizes and 50/50 raised over $500 –
many thanks to those who obtained raffle items or donated items
themselves. This year’s walk was in memory of Don Terrell who will
be greatly missed. As always the scleroderma community gave
generously and has raised approximately $21,000 to date. Tori
Anderson and WAYZ FM radio carried out an awareness campaign
with on-air interviews and Public Service Announcements throughout
central and southern Pennsylvania, as well as Maryland.
We would like to thank all of our sponsors:
Actelion Pharmaceuticals
Giant Foods
WAYZ Radio
Award plaques were given out to the teams with the most walkers, as well as the teams who raised the most money at the 2009 walk.
Teams with most walkers: First Place: Team Valentin, Second Place: Debs Crusaders, Third Place: High Noon Platoon
Most money raised by a team in 2009:
First Place: Kay’s Krew $3635, Second Place: Team Wendy $2254, Third Place: Jody’s Gang $1346
Carrying out this event is truly a team effort and only possible through the efforts of our volunteers. Thank you!
To see more photos (thank you Mark) go to:
http://www2.snapfish.com/snapfish/thumbnailshare/
AlbumID=2743301023/a=1056021023
1056021023/otsc=SHR/otsi=SALBlink/COBRAND_NAME=snapfish/
–2–
Shore Walk 2010
Walking in Manasquan 2010
T
he 10th Annual “Stepping Out To Cure Scleroderma” Walk at the
Jersey Shore was held on June 6, 2010, in Manasquan, NJ. The
Manasquan Beach Walk was transformed into a sea of blue and white
T-shirts on a picture-perfect day. The 234 walkers and approximately
30 volunteers who participated created awareness and raised
money supporting the SFDV and its mission of education,
support, and research.
Our volunteers arrived at 7 AM and worked like a welloiled machine picking up supplies, putting up signs, tents, and
tables, and setting up the registration, refreshment, information, promotion, and t-shirt tables. We thank everyone for
helping make the day enjoyable for all and for making the
walk a success.
Many thanks to our sponsors and supporters including
Actelion Pharmaceuticals, A. Bailey Plumbing & Heating,
Wegmans Ocean, Ocean Trophies, and Spring Lake
Freezer. We also want to say thank you to Patrice Pearce
and her co-workers from Monmouth Medical Center who
built a balloon arch despite the persistent wind and running
out of helium. We thank our 50/50 winner, Mary May, for donating
her winnings back to the SFDV. Lisa Williams’ Girl Scout troop has
been helping at the walk as long as anyone can remember. This year
one of her girls, Stephanie Marie Hanvey, a talented young recording
star, sang the Star Spangled Banner at the start of our walk. We thank
Stephanie and her fellow girl scouts including Amber, Chiara, Lisa,
Katy, Alison, and Eve for continuing to support Lisa’s Team and the
Shore Walk. Bar Anticipation in Lake Como and the SFDV hosted a
post-walk barbeque and we thank them for continuing to provide a
place where everyone can unwind after the excitement of the day.
The Shore Walk was featured in an article published by the Coastal
Star on June 10, 2010. Jamie Biesiada who reports for the Coastal
Star wrote about scleroderma and the Stepping Out To Cure
Scleroderma Walk, and interviewed several participants. We thank
Jamie for helping us make the public aware of scleroderma. Copies of
the article can be obtained at the Coastal Star office in Manasquan or
by contacting the SFDV office at 866-675-5545.
We are grateful to all of our teams and supporters and are happy to
have recognized our teams with the most walkers in 2010 and highest
donations in 2009.
Most Walkers 2010:
1st Place Jenny’s Journey
2nd Place Grandma Doris’s Kids
3rd Place Gordon’s Team
Most Money Donated in 2009
1st Place Helen’s Angels
$6645
2nd Place Team Rapolla
$2681
3rd Place Grandma Doris’ Kids $2372
More photos from the day can be seen at
http://www2.snapfish.com/snapfish/thumbnailshare/AlbumID=2513300
023/a=1056021023_1056021023/otsc=SHR/otsi=SALBlink/COBRAN
D_NAME=snapfish/
–3–
T
Philadelphia Walk October 10, 2010
he 21st Annual “Stepping Out To Cure Scleroderma” Walk
was held on October 10, 2010. October did not disappoint
with perfect weather and 760 registered walkers who came out to
support the scleroderma community and the Scleroderma
Foundation Delaware Valley Chapter. This year 26 teams
attended in person to walk along Boathouse Row in Fairmount
Park. To date, the 2010 Philadelphia Walk has raised
approximately $80,000 to support education, public awareness,
support group programs, and funding for research. Awards
were presented to the teams with the most walkers:
1st Place Team Bhagat, 2nd Place Team Joey,
3rd Place Team Schetter
Awards were also presented to the teams raising the most money in
2009:
1st Place Team Cimini, 2nd Place Joanne’s A Ω, 3rd Place Burl-Cam
Everyone enjoyed the food generously donated by BK Foods in
Philadelphia, PA, and Bernie’s Pretzels of Aldan, PA. They also had
fun taking a chance at winning one of the many raffle items. This
year’s top prizes were day passes to Disney World in Orlando, Florida.
We were honored to hold this year’s walk in memory of two vital,
accomplished women, Jeanne Quarto and Bernadette Cunningham,
who lost their battle with scleroderma, but felt strongly that their
families continue to fight to find a cure for this terrible disease.
We were also pleased to have a representative from Congressman Joe
Sestak’s office, Kathy Do, read a letter from the Congressman
supporting the SFDV and recognizing the accomplishments of the
Scleroderma Foundation and its chapters, as well the national effort to
improve healthcare and support research towards finding a cure for
scleroderma.
We are grateful to our 2010 sponsors:
Actelion Pharmaceuticals
BK Enterprises
Healthmark Foot and Ankle
Saul Ewing LLC
We would also like to recognize the substantial support of
our fabulous DJ and announcer, Charlie Danelutt from
IMS Audio Visual, Scott Ritchie of Ocean Trophies for
the beautiful award plaques, and Navneet Verma and the
Bhagat family for organizing and providing team and
walk photos.
As always our volunteers are at the core of this event and make everything – I mean EVERYTHING – happen. They continue to step up and
take ownership of the Philadelphia Walk. They are an absolute Dream
Team….we are so grateful. Thank you.
More photos from the 2010 Philadelphia Walk are available at snapfish.com at
http://www2.snapfish.com/snapfish/thumbnailshare/AlbumID=3015181
023/a=1056021023_1056021023/otsc=SHR/otsi=SALBlink/COBRAN
D_NAME=snapfish/
–4–
Philadelphia Walk October 10, 2010
–5–
Birthday Donation
Thank you to Abigail Gorrin for remembering
her uncle Ken Dardes on her 13th Birthday.
In lieu of gifts she requested that donations be
made to the SFDV in his memory. Her friends
and family responded generously and raised
$1800. We are honored to accept this donation and applaud Abigail for her giving spirit.
Gift
August and Lucy Negro
The Scleroderma Foundation Delaware Valley Chapter was
honored to receive a generous donation from the Estate of
August Negro who passed away in 2008. August wanted to
honor the memory of his wife of over 50 years. Lucy Negro was diagnosed at
age 18 with scleroderma. August knew of her
diagnosis when they married. They lived a full life together along despite
Lucy’s struggle with her disease. August continued to take care of Lucy as her
illness progressed allowing her days to be filled with the love and support of
her family. Lucy and August were involved with scleroderma support groups
and in helping others. Their gift will help the SFDV continue to undertake its
mission of education, support, awareness, and research and honor the memory
of August and Lucy Negro.
To view a commemorative video about the love story of August and Lucy
Negro on You Tube go to http://www.youtube.com/watch?v=YQ1WQ3Vkf5M
OR search for Scleroderma; A Love Story on Youtube.com
Thank you to our members of the SFDV. We appreciate your continued support!
Susan K. Anastor
Beth Andrus
Joan Bailey
Ruth Barr
Susan Bashore
Dr. Linda J. B. & Mark Baum
Deborah M. & George C. Bee
Eleanor Bellanco
Mary Beller
Carole A. Benbassat
June G. Berger
Michael B. Berman
Sandra Bernhard
Cynthia R. Besselievre
Neerja M. & Pradeep K. Bhagat
Joan Bitting
Karl & Kathleen Blankenship
Andrea & Allen Blum
Dinah Bohannon
Shawn A. Bohn
May Bolthausen
Cathy Brandell
Jacqueline J. Brewer
Harry Briggs
Frances A. Brown
Laura Bruno
Randall D. & Michelle J. Burns
James J. Busillo
Carolyn & Angelo Calabrese
Giuseppe Cannistraci & Jeanette
Jimenez
Bonnie Carlucci
Daniel Caruso
Rose Cervo
Natalie Chango
Laurie T. Clauss
Dr. Lois J. & Mr. Sidney Cohen
Louis Coppola
George R. & Martha G. Coraor
Cynthia & Neil Cornelssen
Diane Courtemanche
Alvin W. & Angela R. Crowl
Patti A. & John J. Crowne
Cynthia L. Curtis-Budka
David L. & Stephanie D’Arcangelo
Beth Dardes
William R. Davis, Jr.
Lawrence & Lynda M. Delviscio
Chris Derk, MD
Mary P. Dickinson
Kathy Digiacomo
Rita DiMauro
Lisa Divers
Donna M. & Joseph T. Domant
Marie F. Domenico
Mary Ann Dortona-Law
Rosalie A. & Charles L. Dunhour
Lisa D. Dunhour
Ann Earle
Tina Eckenrode, RN, BS
Sandra E. & Joel Elson
Susan Endreson
Dawn M. Estelle
Dr. Joan C. Evans
Lucille Falvella
Marilyn R. Feehan
Ruth Fisher
Barbara Fontana
Michelle Forino
Madeline D. Frank
Sylvia & Stanford Frank
Vicki M. & James Franken
Ellen Fredenburg
Sharon & Edward Frey
Esther G. Friedman
Leatrice Friedman
Mary Francis Friel
Valerie L. Furman
Mike Gates
Jeffrey A. Gehrlein
Elizabeth Gensel
Rose F. Geurds
Jeanne H. Gillan
Kathy Gordon
Jane Graham
Jodi Graham
Edith P. Greentree
Marilyn Haas
Diane Hagner
Ellen Halupa
Randall B. Hampton
Anne Hansen
Patricia A. Heller
Laura & Ed Henry
Norma C. Higgins
Barbara L. Hoelle
Harold & Brenda Honig
Caroline H. Howell
Vivien Hsu, MD
William J. & Nancy L. Hughes
Ernestine Ilcken
Betsy R. Ingram
Katayun Jaffari
Karen Janjanin
Sergio Jimenez, M.D.
Gerald D. & Jewell A. Joyce
Helene E. Jung
Beryl S. Kane
Rita M. Kearney
William & Joan Keck
John Keegan & Charlotte Clark
Deborah C. Keen
Jane Keil
Joseph H. & Jean T. Kelly
Patti & Mike Kendall
Christine Killough
Rosemarie A. Kimmell
Maryann King
Lisa & Scott A. King
Arlene Kline
Jacqueline V. Klucsarits
Sharon Kolowitz
Elaine Korbler
Bernice M. Kuhns
Dolores Kurtz
Deborah & Frederick Kutney
Anne Laddin
Michael & Frances Langan, Sr.
Alesia Lee Lazorisak
Rita Lazos
Marilyn H. Levett
Stephanie Lincoln
Joan Malamut
Gloria Maldonado
Rita P. Mallia
–6–
Judith E. Martin
Bernita C. Mayberry
Louis J. Mazzoni
Pauline McConnell
Mary H. & Joseph T. McFadden
Pat McGann
Patricia McLaughlin
Pamela McLeod
James D. & Kathryn A. Meredith
Wilma M. & Donald J. Miller
Lawrence P. Milliken
Barbara J. Monteith
Mary D. Montgomery
Margaret R. Morgan
Pamela R. Morin
Hedy E. Morrow-Knouse
Linda Mouradian
Marsha Niederman
Maureen Nightingale
Martha L. Niland
Jacquelyn A. Noll
Mary M. Nuzzo
Susan O’Brien
Sister Kathleen M. O’Dea
Stephen A. & Ivana A. Okula
Helen M. Owens
Suzanne Parchman
Joyce M. Parkinson
Maureen Parris
August Pavis
Teresa Joan Phillips
James B. Pokoy
Jenkyn A. & Isabelle Powell
Joan Price
Valerie Pullen
Laurie Rabin
Esther Rabin
Donna & Edward Riegel
Sharon K. Riggio
Carrie D. Rightmire
Sarah A. Riper
Joyce Roby-Washington
Connie M. Rohn
Gail L. & Bill Romig
Joanne Roush
Robert J. & Ellen S. Ruffing
Ruth Rundgren
Nora Sandorfi, MD
Sara Jane Sant
Megan K. Savaria
Thomas J. Schlemmer
Patricia M. & John M. Schwalm
Morton Schwartz
Carole Schweitzer
Michael & Norma Scott
Dennis M. Scott
Renee Shapiro
Patrick & Nancy Shay
Ann M. Sherwin
Nicholas A. & Eileen Siciliano
Constance C. Sipple
David U. & Marsha Smith
Marilyn Smith
Jennifer K. Smith
Cindy Statler
Heidi Stobbart
Patricia A. & John J. Stone
Elisa & Jeffrey Stong
Robert Strawser
Ladonna G. Tarpley
Alfred E. Thiele
Amy M. Thomas
Lisa Thompson
Mr. & Mrs. Daniel Thoren
Mary Pat Thynge
Edward M. Tompkins
Jack & Barbara Trachtman
Lynne C. Traverso
Charlene F. Trzaska
Susan Tylka
Christina Valocchi
Victoria A. Vernon
Judy A. Wagner
Ellen Waldstein
Dr. Harold C. Whitney
Lenore Witt
Connie V. Yarzabek
E. Jayne Young
Wendy Zamiska
Bryan R. Zeamer
Support Group Meeting Locations
Delaware
Wilmington, Delaware (North Delaware)
Debra Wagner, 610-255-5768 or 610-8646669, scleroderma.desupport@comcast.net
Meets monthly at 6:00 pm – January 24
Kirkwood Library
6000 Kirkwood Hwy
Wilmington, DE 19808-4817
(302) 995-7663
New Jersey
Cherry Hill, New Jersey (Burl-Cam)
John Keegan, 856-767-4783,
johnkeegan@comcast.net
2nd Thursday of every other month starting
in January at 1:30 pm
385 Kings Highway North, Cherry
Professional Building
Cherry Hill, NJ 08034
856-779-7225
Monmouth, New Jersey
Marsha Niederman, 732-276-5807,
mjniederman@optonline.net
2nd Saturday of each month at 10:00 am
Neptune Twp Public Library (September
meeting at another location)
2nd floor conference room
25 Neptune Blvd.
Neptune, NJ 07753
732-775-8241
Warren, New Jersey (Watchung Hills)
Ellen Waldstein, 908-647-7266,
ellw@optonline.net
Chris Frascella, 908-604-6054, co-leader
Tuesday at 2:00 pm, quarterly – January 18,
March 8, June 7 (luncheon meeting at
another location), October 11
Trinity United Church
118 King George Road
Warren, NJ 07059
732-469-5044
Woodbury, New Jersey
Mary Nuzzo, 856-582-6456,
marynuzz@msn.com
1st Tuesday of the month, quarterly at 7:00
pm – March 1, June 7, September 6,
December 6
Underwood Memorial Hospital
Dining Room B, 1st Floor (March &
December meetings)
Suite 14 – adjoining building (June &
September meetings)
509 North Broad Street
Woodbury, NJ 08096
856-845-0100
Pennsylvania
Doylestown, PA
Mary Gocek, 908-256-3408,
marymuffin@gmail.com
4th Monday of each month at 6:30 pm
Doylestown Hospital
1st floor – North Wing – Conference
Room B
595 West State Street
Doylestown, PA 18901
215-345-2200
Langhorne, PA (Bucks County)
Ilene Nusblatt, 215-321-1670,
inusblatt@comcast.net
(June and December meetings)
Sharon Durham, 215-638-2771,
ijoy@mailstation.com (March and
September meetings)
First Wednesdays quarterly at 7:00 pm –
March 2, June 1, September 7, December 7
Aria Health - Bucks County
Conference Room C – ground floor
380 N. Oxford Valley Road,
Langhorne, PA 19047
215-949-5000
Norristown, PA
Andrea Balkiewicz, 610-495-7976,
and1300@verizon.net (co-leader)
4th Wednesday of each month at 6:30 pm
Montgomery Hospital Cancer Center
1330 Powell Street, Suite 308,
Norristown, PA 19401
610-270-2000
Philadelphia, PA
Joyce Roby-Washington, 215-474-0259 or
267-516-6987, joycerw757@msn.com
2nd Wednesday of each month at 1:30 pm
Presbyterian Medical Center, University of
Pennsylvania Health System
39th and Market Streets, Wright Saunders
Building
Gardner Conference Room 128-C
Philadelphia, PA 19104
215-662-8000
Reading, PA
Dawn Batzel, 610-287-1445,
happy81070@verizon.net
Every other month on Saturdays at
10:00 am – March 12, May 14, July 9,
September 10, November 12
40 Berkshire Court, Wyomissing, PA 19610
610-374-7400
Williamsport, PA
Jayne Young, 570-323-4228,
weyclu@sunlink.net
Gayle Bullock, 570-398-0551 (co-leader)
1st Wednesday of each month at 1:00 pm
(except January, February, July & August)
Life Center in the Lycoming Mall
300 Lycoming Mall Cir #3021, Muncy, PA
17756
570-546-6879
York, PA
Kathleen Gaskell-Blankenship,
717-428-1464, karlkathleen@earthlink.net
Meets quarterly on Wednesdays at
7:00 pm – March 2
Elmwood Mansion Conference Center
400 Elmwood Blvd. (Corner of S. Belmont
St & Elmwood Blvd), York, PA 17402
800-436-4326
Support Group Leaders Needed
We are always looking to expand our support groups into new areas.
Please contact our office if you are interested in becoming
a Support Group Leader.
Delaware
Southern DE Area
New Jersey
Cape May Area
New Brunswick Area
Toms River Area
Pennsylvania
Carlisle/Harrisburg Area
Lehigh Valley Area
Delaware County Area
We have started an e-mail support group for those patients
and families that are not close to one of our existing support groups or those who would like to participate in addition to attending a support group. There is a weekly topic of
discussion by email and everyone is free to comment or ask
a question at any time. You can participate as little or as
much as you like. If you are interested in being part of an
email support group, please contact the office at 856-7797225 or via e-mail at cferara@scleroderma.org.
Disclaimer: The Scleroderma Foundation in no way endorses any drugs or treatments reported in this newsletter or at SFDV sponsored meetings. Information is provided as a resource
to be used with discretion. Because the manifestations and severity of scleroderma vary among individuals, personalized medical management is essential. Therefore, it is strongly recommended that all drugs and treatments be discussed with one's physician to assure proper evaluation and treatment.
–7–
NON-PROFIT ORG.
U.S. POSTAGE
The
Pursuit
PAID
Permit No. 1940
BELLMAWR, N.J.
NEWSLETTER OF THE SCLERODERMA FOUNDATION
DELAWARE VALLEY CHAPTER
385 KINGS HIGHWAY NORTH
CHERRY PROFESSIONAL BUILDING
CHERRY HILL, NJ 08034
PLANNING AHEAD
April – 2nd Annual “Stepping Out to Cure Scleroderma”
Run/Walk, Wilmington, Delaware
May – Educational seminar in PA
June – 11th Annual “Stepping Out to Cure Scleroderma”
Walk, Manasquan, NJ
July – National Conference in San Francisco, CA
Phillies Baseball
August – 7th Annual “Stepping Out to Cure Scleroderma”
Walk, York, PA
October – 22nd Annual “Stepping Out to Cure Scleroderma”
Walk, Philadelphia, PA,
Educational seminar in NJ
November – Thanksgiving Parade
Check our website at
www.scleroderma.org/chapter/Delaware_valley for news and
information. Check out our Facebook page for frequent postings at www.facebook.com/pages/Delaware-Valley-Chapterfor-Scleroderma-Foundation/179200360685
MISSION STATEMENT
To help patients and their families cope with Scleroderma through mutual support
programs, peer counseling, physician referrals and educational information.
To promote public awareness and education through patient and health
professional seminars, literature and publicity campaigns.
To stimulate and support research to improve treatment and ultimately find the
cause and cure of Scleroderma and related diseases.
SFDV Office
Scleroderma Foundation
Delaware Valley Chapter
385 Kings Highway North
Cherry Professional Building
Cherry Hill, NJ 08034
856-779-7225
866-675-5545
DVchapter@scleroderma.org
www.scleroderma.org/chapter/delaware_valley