Monday, September 23, 2013

HSS Events: Honoring Lupus Heroes on 9/24 and Facebook Chat on 11/6.

About two years ago, I traveled up to NYC to speak to a lupus group at the Hospital for Special Surgery. I could tell then that HSS paid special attention to their lupus patients, but they've gone above and beyond with their upcoming event. On Tuesday, September 24th, HSS is hosting an "Honoring Lupus Heroes" event, which will recognize patients' remarkable contributions to lupus research and care. How great is that! Here are some snippets from a recent press release about the event: 

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According to Dr. Jane E. Salmon, Director of the Lupus and Antiphospholipid Syndrome Center of Excellence at Hospital for Special Surgery (HSS), “Our patients are the unsung heroes who have helped transform lupus care,” They donate blood and tissue samples for research, take investigational drugs in clinical trials, provide personal insights to improve how we care for them and for others. They are philanthropic and volunteer as peer counselors. They sacrifice time, energy, personal resources and their own privacy to advance science and clinical care.”

As part of Hospital for Special Surgery’s 150th anniversary celebration, the Division of Rheumatology will honor the thousands of lupus patients who have inspired each member of the healthcare team.  “Honoring Lupus Heroes,” will celebrate patients’ wisdom, generosity and invaluable contributions to lupus research and care on Tuesday, September 24, from 5 PM to 7:30 PM.  The event will take place in the Richard L. Menschel Education Center on the second floor of the hospital’s main building in New York City.

“When I started out as a physician many years ago, the average survival rate was around three years. Today it is rare to lose a patient to lupus,” said HSS rheumatologist Dr. Michael Lockshin.  “Advances in lupus treatment have transformed it from a fatal disease to a chronic illness, enabling many people to lead normal lives. ‘Honoring Lupus Heroes’ will help us acknowledge the many patients who have helped HSS lead the way in gaining a better understanding of this disease.” 

One such patient is Rachel Grodzinsky, one of the first people to participate in a study at Special Surgery challenging the widely-held belief that women who had lupus should not become pregnant.

“I felt somewhat honored to be a part of it. I felt it was really important,” she recalls.  “Pregnancy was something I had been struggling with for a few years before I actually got into the study. It felt very dear to me because it was something that I felt would help people after me.” Grodzinsky later became the proud mother of two sons.

“Our ‘Lupus Heroes’ are extraordinary people whose contributions have helped improve the lives of thousands of individuals with the disease,” said HSS physician-in-chief Dr. Peggy Crow. “They have taught us poignant lessons about compassion, service and excellence in care. We are deeply grateful that they have allowed us to learn from their journey and grow as caregivers, and we’re thrilled to have this opportunity to honor them.”

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In other HSS news, a Lupus Chat will take place on the HSS Facebook page on November 6 from 5:30 to 6:30 p.m. EDT.

Be sure to mark your calendars!

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