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2015 Summer Newsletter 385 Kings Highway North Cherry Hill, NJ 08034 For more information call the SFDV office at 866-675-5545 or email [email protected] thePURSUIT Every Step Counts Stepping Out to Cure SCLERODERMA EDUCATE • ADVOCATE • CURE WALKs NEWSLETTER OF THE SCLERODERMA FOUNDATION DELAWARE VALLEY CHAPTER Summer 2015 Inside This Issue SUPPORTwith Love November 15, 2014: a perfectly joyous day, as we watched our pre- Then we discovered the Stepping Out to Cure Scleroderma Walk Springing Into Action cious 26-year-old daughter marry a caring, funny, wonderful man. planned for May 2nd in Ventnor City, NJ. We recalled walking for Saturday, August 8th January 28, 2015: an imperfectly scary day as I heard the physician our friend 15 years ago in Philadelphia and knew this was an impor- Race4Linda .........................................p. 2 declare that this same precious daughter has limited systemic scle- tant chance to spread the word about this rare disease to our family John Rudy Park rosis. The word scleroderma held particular meaning for us, as we and friends and to convey the need for emotional and educational 400 Mundis Race Road, York, PA Cruise for a Cure ...............................p. 2 had all watched a dear friend fight an aggressive form of the disease support for those who are impacted, as well as funds for continuing around 15 years ago. But we also knew that it took her many, many research in the hopes of changing the future. Our daughter created Registration 9:30am | Walk Starts 10:30am years to receive the diagnosis, which didn’t happen until she already a team, and that was the moment that initiated our family’s finding Women’s Club Fitness Center had major irreversible organ involvement. So as frightening as the a level of support we never even could have imagined. We shared & Day Spa ............................................p. 2 Sunday, October 4th word was to us, we were also relieved that our daughter’s diagnosis the walk announcement on our Facebook pages, and our “friends” had come quite early in the disease progression, with the opportu- took it from there, not only jumping in to participate personally, but Lloyd Hall Days of Learning nity to monitor her carefully. We choose to view this condition not spreading the information further to their own friends, families and #1 Boathouse Row Educational Seminar .......................p. 3 as an ending, but rather as a chronic illness with which she will live colleagues. As we tracked the progress of the team formed on our Registration 8:15am | Walk Starts 9:15am a full life, while also compensating for the manifestations that have daughter’s behalf, we were overwhelmed by the response, watching Dental Implants already impacted her life and those she will face in the future. This the number of walkers and the dollars raised increase exponentially. Living with Scleroderma ...............p. 4 & 5 is a bewildering disease with a frustrating panoply of symptoms, I can specifically recall the tears in my eyes as I saw a donation from which vary greatly from person to person, so reliable information an old friend who had moved away from the area 20 years ago and and human support are crucial factors for moving forward in a posi- to whom I haven’t spoken in at least 10. Yet clearly as soon as she Meet Junior Board Members .......p. 6 tive and optimistic way. saw that our daughter was fighting scleroderma, she immediately went online to donate to her team. And then there were the donor Attitude of Gratitude And thus enters the Scleroderma Foundation of the Delaware Valley. names that none of us even knew, people opening up their Helpful Tips from Patients As a retired lawyer, I have transferred my hearts and purses to help a friend of a friend, regard- UPCOMING Living with Scleroderma ...............p. 6 prior skills of research- less of the fact that they had never met her or us ing through legal journals personally. and online case law to now EventsEvents Bequest to SFDV ...............................p. 6 searching anything and ev- May 2nd dawned as a bright, clear Stepping Out to Cure Scleroderma Walk erything on Google. Research day. Our daughter and her husband August 8 Where to Find is also a significant part of drove with my husband and me down York, PA Support Meetings ............................p. 7 our daughter’s occupation to Ventnor, arriving by around 9:15. and doctorate-level academ- Within minutes our team walkers be- Teri’s Run &Twilight Walk Email Support Group ......................p. 7 ics. So, within days of her gan arriving, and it felt like a fun social September 11 diagnosis, she and I took to occasion as we greeted each person Downingtown, PA our computers to find as much The Stepping Out to Cure Sceroderma walk with hugs. The gratitude grew and grew Upcoming Events .............................BC as we could about the cur- Team Lankford participating in as we were surrounded by so many rent status of treatments, the future wonderful friends and family. And the real highlight occurred as we Bonnie’s Cruisers Chinese Auction prospect for cures, knowledgeable health care providers, and, most saw a nephew, his wife and two children walk up to register, having September 12 Mt. Holly, NJ importantly, where she and those of us who love her could get the driven over 3 hours from Virginia to be a part of this event. Some kind of support we knew we would need. In all of those searches, the tears of appreciation were inevitable. In addition, we met additional Scleroderma Foundation was prominent as a source of education warm and nurturing folks from the Foundation, who provided Stepping Out to Cure Scleroderma Walk and connection with others impacted by this disease. even more sources of encouragement and shoulders to lean on. The October 4 walk itself was glorious - perfect weather, perfect view of the ocean, Philadelphia, PA Our first direct exposure to this organization was when she and I perfect conversation with our team members, even perfect canine attended a local educational session. In that one session we quickly walkers who provided us with snuggles and cuteness. Overall, Educational Seminar at Rutgers University found tangible support and caring among so many people we had everything about the walk - from the creation of a team to viewing October 25 never met before, not to mention presentations that were informa- the members and donations multiply to walking in the sun with so New Brunswick, NJ SFDV tive and forward-thinking. A month after that program, she and I many loving people - was a memorable event for all of us, especially attended another education session, this time accompanied by her heartwarming for my husband and me as parents seeing and feeling Giving Tuesday 385 Kings Highway North, new husband and my old one. Again, we met even more people such a substantial expression of love for our daughter. December 1 Cherry Hill, NJ 08034 who wrapped all of us in warmth and empathy, from the exemplary Check our website at SFDV staff to the scleroderma patients to the families and friends We all look for reasons why things like this disease happen to good For more information call the SFDV office at who are living through this journey with them. Again, we had the people, and perhaps one of those is so that we can get the opportu- for news and information. opportunity to glean a great deal of knowledge from the university nity to see the best side of humanity, the generosity and caring, the www.SFDV.org 866-675-5545 treatment team who presented. Along with the in-person interac- kindness and compassion, the ability to reach out even to strangers Check out our Facebook page for frequent postings at www.facebook.com/SFDelVal or email [email protected] tions, our daughter and I participate in relevant forums online, who need support. An unforgettable and uplifting experience for a and follow us on Twitter including the Foundation-sponsored Inspire group, which are also family traveling this new and unknown road with a loved one. great sources of commonality. Written by Diane Lucente Raised $8,500 Dr. Patrick M. Dr. Nora Dr. Lisa Dr. Chris T. Cronin, DO Sandorfi, MD Pappas-Taffer, Derk, MD Springing into action MD Dr. Peter A. Cruise for A Cure Merkel, MD On Sunday, April 26, one of SFDV’s prized Support Group Leaders, Angie Crowl, pictured below peering into the window of a classic Ford, and her husband Alvin Crowl held their 3rd Annual “Cruise for A Cure” Dr. Dinaz car show. Italia, MD days of LEARNING On this beautiful, sunny day in Wilmington, Delaware, the event featured classic, antique, street rods and muscle cars. seminar The numbers are still being tallied but suffice it to say 152 cars showed Mount Laurel - March 15, 2015 Educational University of Pennsylvania- March 28, 2015 this year and along with the magnificent sponsored steering wheel A rare sunny day in March brought together two Dr. Patrick M. Cronin, DO On a Saturday in early spring, 99 people impacted trophies, have raised at least $10,260 and counting! speakers from the South Jersey region to discuss in some way by scleroderma attended a highly Specializes in nutrition therapy for scleroderma patients and Rheumatology informative program presented by several team members of the highly regarded Scleroderma Raynaud’s Phenomenon in scleroderma. Cooper Internal Medicine RACE4LINDA 5k Cooper University, Voorhees, NJ Center of the Hospital of the University of Penn- sylvania. April 25th was the start of a busy weekend for the Scleroderma Founda- The first topic was addressed by Dinaz Italia, a reg- tion of the Delaware Valley (SFDV).
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