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Current and Future RSDSA Initiatives on Behalf of the RSDSA Community

Published on July 2, 2015 under Fundraising
Current and Future RSDSA Initiatives on Behalf of the RSDSA Community By Jim Broatch, RSDSA's Executive Vice President, Director This month, RSDSA is partnering with The Coalition Against Pediatric Pain and The US Pain Foundation to co-sponsor a free camp for children living in chronic pain: THE CENTER FOR COURAGEOUS KIDS in Scottsville, Kentucky. The camp is July 14-17, 2015 for children ages 7-17. The goals of the summer camp are FUN, FUN, & FUN!!!! It is the first time we have ever found a camp for children living in pain. The camp is totally FREE for all participants and a parent/guardian who will stay at the camp with his/her child. Please go to www.tcapp.org and fill out an application…
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Developing CRPS/RSD and Finding Hope

Published on June 29, 2015 under Giving Back
Hi there! My name is Katie and I’m the blogger behind Upcycled Treasures and A Handcrafted Wedding. I was diagnosed with CRPS back in August 2012, and remember how difficult it was to find information and inspiring stories. In fact, I generally ended my search feeling more discouraged than when I started, and this only seemed to make my symptoms worse. Can anyone else relate? The RSDSA website was the best source of information I could find, which is why I am so excited to share my story with you. I want you to know that there is hope, and not to be discouraged by what you read. However, I’d be lying if I didn’t admit that I am also…
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Sammie Barrett is RSDSA’s New Special Events Coordinator

Published on June 19, 2015 under Events
  My name is Sammie Barrett. I am the new Special Events Coordinator for the RSDSA. The RSDSA has been near and dear to my heart since a year after I was diagnosed.  I was diagnosed with RSD/CRPS 9 years ago after spraining my ankle in ballet. I danced 5 days a week for a minimum of 4 hours per night as well as teaching some classes. But once this "sprain" didn't heal correctly, that all changed. Five doctors later, someone finally was able to diagnose me. Unfortunately, this doctor told me I would never walk again, and that I absolutely would not dance again. As a thirteen year old little girl, my world had been turned upside down. But,…
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The Handicap’s Appetite

Published on June 2, 2015 under Guest Blogger for RSDSA
    by Nancy Meagher     Sometimes I still crave running and walking. It was a rare wedding celebration that I had not been moved by the music to dance. A few years ago our niece married a fine fellow from the south of France. As I had taken a few years of High School French, and as language is a hobby of mine---- I was placed at the reception table with: Sylvan's Lovely Aunts. Moved by American songs in a language that did not come easily, a friendship ensued. We danced our international hearts out. The French in their stylish slim heels – I in a sassy pair of patent leather flats that my friend Elisa insisted I buy.…
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How to Obtain the Best Medical Care for CRPS

Published on May 14, 2015 under Guest Blogger for RSDSA
Steven Feinberg, MD, MPH Board Certified, Physical Medicine & Rehabilitation Board Certified, Pain Medicine Feinberg Medical Group Palo Alto, CA Rachel Feinberg, PT, DPT Director, Physical Therapy & Functional Restoration Program Feinberg Medical Group Palo Alto, CA If you are reading this, it unfortunately means you or a friend or loved one have been diagnosed with complex regional pain syndrome (CRPS). This article is not about diagnosing and treating CRPS but rather about how to obtain the best medical care for this diagnosis. There are lots of good reasons to obtain the best medical care possible for this diagnosis. First and foremost is that early quality treatment has the best chance of resulting in the best outcome. Second, the wrong…
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Multidisciplinary Treatment…Three Weeks in Utah

Published on May 8, 2015 under Guest Blogger for RSDSA
  By Aubrey Haley   In 2013, after living with full body CRPS for almost four years, I was afforded the opportunity to go to a treatment facility. My husband and I dug deep into the multidisciplinary treatment world, searching online and making phone calls for days. I knew I didn’t want to be checked into a rehabilitation hospital. Likewise, I didn’t want to be treated like a drug addict or a psych patient; I needed a facility that understood the intricacies of chronic pain. The Bridge Health Recovery Center kept popping up on my Google searches, like a sign from the universe. I was terrified to leave my family for almost a month, but I was desperate to treat…
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Please join RSDSA for the Achilles International Walk for Hope and Possibilities on June 28, 2015 in NYC’s Central Park

Published on April 24, 2015 under Events
I want to introduce you to Diane Simonson, a first-time walker in this year’s walk. I am a former ballet dancer. In 2006, I began to have problems with my legs. I was tested for MS, Lou Gerhig's Disease, and everything else under the sun. As many of us have experienced - doctors told me I was 'faking' it, and it was 'all in my head.' (Yes, I can magically make my legs swell to twice their size and make skin color changes! I ‘m an amazingly good faker!) Finally, I was diagnosed with CRPS/RSD in 2009 .I was also very, very fortunate to find doctors (a neurologist, two orthopedics, a pain management doctor) at HSS who still work together…
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The Cynthia Penaskovic Memorial Fund

Published on April 17, 2015 under Memorial Fund
  Pain is a more terrible lord of mankind than even death himself. - Albert Schweitzer. Too often, life changes on a dime as my pastor frequently tells our congregation. Just ask any person suffering with CRPS when they developed CRPS/RSD and they can immediately relate the date and time. So it was with Cynthia Penaskovic, a vibrant naval pediatric flight nurse who developed CRPS/RSDS 25-years ago after a car accident in southern California. Her doctors at Scripps Torrey Pines in San Diego called it “one of the worse cases of widespread RSDS they had even seen.” Joan Penaskovic, Cynthia’s sister spoke of her subsequent “solitary life spent creating exquisite beaded art which she often donated, until she could no…
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New U.S. Clinical Trial of Neridronate

Published on April 13, 2015 under Research and Development
  In the last fifteen years, only two randomized, placebo-controlled trials for CRPS have been conducted in the United States. Sadly, both were unsuccessful. Our optimism is rising, however, with the U.S. Food and Drug Administration’s declaration in 2014 that Complex Regional Pain Syndrome (CRPS), also known as Reflex Sympathetic Dystrophy (RSD), is officially a rare disease. The designation is a strong catalyst for new drug development. Developers qualify for clinical trial tax incentives, may sell the drug without competition for seven years, and may enroll fewer patients in a trial (as recruiting is more difficult in small populations). Four pharmaceutical companies are now considering clinical trials for CRPS in the United States. The first out of the gates is…
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Camp for Courageous Kids!!!!

Published on April 2, 2015 under Bully Free Zone
Do you remember sitting around the campfire and signing camp songs, roasting marshmallows and giggling with your new friends? It's your first day of summer camp and you are so excited to be there, to join in all the activities:  archery, bowling, arts & crafts, horseback riding, etc. Fast forward 25 years to being a Mom and/or Dad whose child who lives in chronic pain - there are no summer camps for your child because he/she is "too complex." But now there is a SUMMER CAMP for children living in chronic pain: THE CENTER FOR COURAGEOUS KIDS in Scottsville, Kentucky. RSDSA together with the US Pain Foundation and The Coalition Against Pediatric Pain (TCAPP) is sponsoring a camp July 14-17,…
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