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