7th Annual York Walk - Aug. 13, 2011

The 7th Annual York Walk was held on Aug. 13, 2011. One hundred and seventy participants, both walkers and volunteers, came out to beautiful John Rudy Park on a Saturday morning to support the scleroderma community south/central Pennsylvania.

In true York Walk tradition participants were treated to entertainment by singer/songwriter Dani Hoy, as well as the Reading Royals mascot, Downtown, and table sales from Cookie Lee and Tastefully Simple, more than 30 raffle items, and a hot dog barbeque.

Awards were given to the teams with the most walkers and most money raised in 2011.

Most Walkers on a team 2011    

                1st Place           Deb’s Crusaders

                2nd Place          Team Valentin

                3rd Place           Kay’s Krew

Most Money Raised in 2010      

               1st Place            High Noon Platoon

               2nd Place           Kay’s Krew

               3rd Place           Team Wendy

We would like to thank our sponsors Actelion and Giant Foods, and our great volunteers who come together as team every year to create a fun event for everyone to enjoy.

22nd Annual Philadelphia Walk

The 22nd Annual Philadelphia Walk is the largest fundraiser sponsored by the Scleroderma Foundation Delaware Valley Chapter and this year drew more than 650 participants and raised more than $70,000.

The Philly Walk takes place every year along Kelly Drive in Fairmount Park passing along the famous boathouses and scenic river. The day starts out early at 6 a.m. when more than 30 volunteers arrive to transform the Lloyd Hall gymnasium into a festival of entertainment, refreshments, raffles, scleroderma information, team photos and more.

Our volunteers make all this possible and we are so fortunate to have dedicated team “families” who come back year after year. Thank you for making the biggest walk the easiest walk.

Awards for the most walkers on a team and most money raised by a team in 2011 were presented at the end of the day.

Most Walkers on a Team     

                      1st Place      Team  Bhagat

                       2nd Place     Team Joey

                       3rd Place      Team Dottie

Most Money Raised in 2011

                      1st Place       Team Cimini

                      2nd Place      Team Burl-Cam

                      3rd Place       Team Joey

We were most fortunate to have generous sponsors this year including Actelion Pharmaceuticals, Merrill Lynch Wealth Management , Ewing/Cona Group, Genentech, Saul Ewing, and Healthmark Foot and Ankle located in Media and Phoenixville, PA.

We would like to thank everyone who contributed to this year’s event. Mindy Schley and BK Foods provided the amazing food and Bernie’s Pretzels (Sharon Hill, PA) the Philly pretzels, Navneet Verma and Pradeep Bhagat organized and took all the team photos, and Robin Levy obtained and extravagantly wrapped the raffle items. Charlie Danelutt never lets us down and returned as our effervescent emcee. Scott Ritchie from Ocean Trophies in Spring Lake, NJ, provided all the award plaques.

Philadelphia Scleroderma Support Group to Host Social Security Administration Speaker

PAH Seminar in Allentown, PA

The SFDV along with Gilead Sciences was pleased to present a seminar on pulmonary arterial hypertension in the setting of scleroderma on May 7, 2011, in Allentown, PA. Dr. Paul Forfia, Director of the Pulmonary Hypertension Program at the Hospital of the University of Pennsylvania, was our guest speaker. He spoke in depth about the causes, symptoms, detection, and treatment of this serious and life threatening condition. We all came away knowing that with the medications available today the effects of pulmonary arterial hypertension can be managed leading to a better quality of life.  As with most complications, early detection is key in providing successful management.

We would like to thank Dr. Forfia for taking time out of his weekend schedule to speak for us. We would also like to thank Mick Dungan and Melissa Anderson from Gilead Sciences for making this program happen.

2nd Annual Delaware 5K Run and Walk

Scleroderma patients and supporters from the Greater Wilmington Delaware area came out on a cold and rainy day to hold its 2nd Annual 5K Run and Walk in Brandywine Park on April 16, 2011. The sun did not come out, but our volunteers found creative ways to keep things dry and the 5K went off on schedule. Jon and Mike from Races2Run directed the race and the Wilmington police led our runners through the local streets and safely back to the finish line in the park. The teams that raised the most money in 2010 and those with the most “walkers” in 2011 were awarded plaques for their achievements.

Most money raised in 2010:

1st Place: Team Personti
2nd Place: Crowls Crawlers
3rd Place: Team Sharon

Most walkers in 2011

1st Place: Team Sharon
2nd Place: Waffy’s Walkers
3rd Place: Barbara’s Angels

We want to thank everyone who came out to volunteer and participate with smiles on their faces despite the dismal weather. We are grateful for your continued commitment.

Photos from the 2nd Annual “Stepping Out To Cure Scleroderma” 5K Run and Walk in Wilmington Delaware.

Lupus and Scleroderma in African Americans: Overlap and Understanding

The Scleroderma Foundation Delaware Valley Chapter and Lupus Foundation of American Philadelphia TriState Chapter joined forces on March 29, 2011,  in Bala Cynwyd, PA, at the Bala Cynwyd public library to present a panel discussion focusing on these two autoimmune diseases and their overlap in African Americans. Dr. Nora Sandorfi from the Department of Rheumatology at Thomas Jefferson University Hospital gave an insightful presentation on this complex and frustrating diagnosis. In addition two patients active in the lupus and scleroderma community participated on the panel adding their personal experiences and insights in dealing with this overlap syndrome. Our program included a lively Q&A session between our presenters and the audience touching on many subjects. It is clear that lupus and scleroderma presents differently in African Americans, but the need for more information through research and clinical studies is critical in helping understand these differences leading to better detection methods and treatments.

Our chapter enjoyed being able to work with the Lupus TriState chapter in making this discussion possible. We thank Dr. Sandorfi and our two patient panelists for sharing their expertise and look forward to similar programs in the future.

Compassionate Allowances Outreach Hearing on  Autoimmune Diseases

The Social Security Administration (SSA) has a list of what is called Compassionate Allowance Conditions. What this means is that the disease entities on this list clearly qualify for Social Security and Supplemental Social Security Income disability benefits which allows the SSA to electronically target and make speedy decisions for those people suffering with these diseases. This is the groundwork that should result in faster approval times for those applying for Social Security benefits and less paperwork.

On March 16, 2011, the SSA held an Outreach Hearing on Autoimmune Diseases in Baltimore, Maryland. The purpose of this hearing was to educate administrators in the SSA so that diseases including scleroderma, lupus, rheumatoid arthritis, and multiple sclerosis, can be listed as compassionate allowance conditions.  Dr. Virginia Steen from Georgetown University was one of the speakers on behalf of scleroderma, as well as Rosemary Markoff, a patient and Board member from the Tri-State chapter. Two patients from the SFDV, John Keegan and Marsha Niederman, attended the hearing and were able to meet several commissioners from the SSA. They were able to reinforce the fact that living with scleroderma demands lifestyle changes often leading to total disability. According to Mr. Art Spencer, Associate Commissioner of the Office of Disability program, scleroderma is likely to be listed as early as June. This is very good news for anyone thinking of applying for disability.