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Events

Knock Out Pain Together- An Inspirational Story of Coming Together

Published on July 18, 2017 under Events
   Sarah Phillips-O’Steen is an ally to the CRPS community. Ever since she was 2 years old, she has been witnessing what CRPS/RSD can do to a loved one. Her father, Julian Phillips, has been living in pain since his daughter was toddling around. As Sarah will tell you, he’s always been good at hiding his pain, but she has never known him without it. In January 2015, Julian took a terrible fall that sent him into one of the worst CRPS/RSD flare ups that he had ever experienced. This guided him into full body CRPS. While Julian was spending time in hospitals, fighting the pain, Sarah witnessed some of the grim realities that come with CRPS. Medical staff didn’t…
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My CRPS Experience at the Young Adult Weekend

Published on July 4, 2017 under Events
By Guest Blogger Jess Henry-Cross Jess was a participant in our very first CRPS Young Adult Weekend this past June. She was more than happy to write a brief blog about her experience and how it changed things for her. Why are events like this so important? Read about what Jess experienced to learn more.   Around 2:30 in the afternoon on Sunday, June 18th I found myself holding back a few (happy) tears.  I was driving home after spending the last 45 hours with a group of women who recharged me in a way I had never even dared to hope for.  I didn’t want the weekend to be over.   I signed up for the RSDSA Young Adult Weekend…
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RSDSA Finds Great Success At Nashville CRPS Conference

Published on April 11, 2017 under Events
By Samantha Barrett, Special Events Coordinator As we regroup after a fabulous weekend in Nashville, Tennessee, we thought it would be nice to do a quick recap of the events that happened this past weekend. An amazing group of people with CRPS, caregivers, and supporters joined us to make this one of our most successful conferences yet! This past weekend, RSDSA staff and board members traveled to Music City to host Treating the Whole Person: Optimizing Wellness at Opryland Resort and Convention Center. This was our first time to Nashville and excitement was abundant. After months of planning, we couldn’t believe how quickly the event came up. Upon arriving at Opryland Resort and Convention Center, our jaws dropped. We never…
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Rare Disease Day 2017: A Rare Game for the CRPS/RSD Community

Published on February 28, 2017 under Events
Today is February 28. It is Rare Disease Day!  This is a wonderful day for educating people about rare diseases and conditions, including Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy (CRPS/RSD). This blog is a little different than what we typically do. We want to help educate people about CRPS/RSD, while helping people find different resources on our website! What could be better than to organize a scavenger hunt?! You will have until Sunday, March 5, 2017 at 11:59 p.m. EDT to complete this scavenger hunt and email your responses to SBarrett@rsds.org. People with 100% correct responses will be entered to win an RSDSA travel mug. The winner will be chosen via a random selection tool online and will be announced…
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A Teen In Pain Making a Difference- Keegan’s CRPS Story

Published on November 1, 2016 under Events
By Guest Blogger Keegan. Introduction by Samantha Barrett It's CRPS Awareness Month. RSDSA has several events happening all over the country this month. We will also be sharing some stories of hope and stories to raise awareness for CRPS/RSD. We were recently introduced to Keegan, a teenager who was recently diagnosed with CRPS. She's not just any teenager; she instantly wanted to raise awareness for CRPS/RSD. Read a little bit about her and about her event! She wrote this blog to kick off our awareness month! Hi all! Happy National CRPS and RSD awareness month! My name is Keegan I'm 15 years old, here's a bit of my story. I left my hometown of Poughkeepsie New York in August to…
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Color the World Orange 2016 – CRPS Awareness

Published on October 25, 2016 under Events
It all starts with an idea. That’s how our friends over at Color the World Orange became successful. They had an idea and acted upon it. Now, we are approaching the 3rd Annual Color the World Orange Day on November 7, 2016! Color the World Orange is a day of worldwide awareness for CRPS. Taking place on the first Monday in November, Color the World Orange encourages members of the CRPS/RSD community to take action. Whether people are getting their friends and family to wear orange to school or work, or if they are getting proclamations for their city/state, every part of Color the World Orange helps make a difference. This year, Color the World Orange is even listed on…
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Longest Day Golf Recap: How It’s Helping RSDSA

Published on September 28, 2016 under Events
By Samantha Barrett RSDSA's very first Longest Day of Golf took place this week. On Monday, September 26, RSDSA was lucky enough to take part in a golf marathon and Innis Arden Golf Club. We had Zach Baron, from Arccos, golfing on our behalf with the support of Jim Broatch. Also at the marathon were fifteen other golfers representing Malta House and the Susan Flynn Oncology Nursing Foundation. Golfers took to the golf course trying to complete as many holes of golf as possible to raise money for the charities they were representing. Prior to the event, which we deemed our very first Longest Day of Golf event, we collected donations. Some people submitted pledges on a per-hole basis. For…
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RSDSA’s Longest Day of Golf- Meet Zach

Published on September 26, 2016 under Events
Interview Conducted by Samantha Barrett Monday, September 26 is RSDSA's very first Longest Day of Golf. We wanted to find someone that would represent us in a great way. That's when Zach Baron came along. As this is being posted, Zach is trying to complete as many holes of golf as possible for RSDSA. People have been making pledges per hole and one-time donations to make this event a success. The more holes of golf Zach completes, the more fundraising is done for RSDSA. We interviewed Zach before he took to the green. Samantha Barrett: Hi Zach! Thank you for participating on behalf of RSDSA for the Longest Day of Golf. Can you tell us a little bit about yourself?…
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Long Island and CRPS- RSDSA’s New Walk

Published on August 16, 2016 under Events
By Samantha Barrett, Special Events Coordinator There is a new event coming to the RSDSA community. I have been particularly excited about it since I’ve been working with the three wonderful women from the walk committee for months now. Millie, Debbie, and Beth all live with CRPS. They hadn’t known each other very well until this walk started to get planned. These three women have been working day in and day out to ensure that the Long Island CRPS/RSD Awareness Walk is a success. Every two weeks, we have a giant conference call and I get to hear about everything they have planned for September 10, 2016 in Eisenhower Park. It is an event not to be missed. Because I…
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RSDSA’s Final Achilles- Our Swan Song

Published on June 29, 2016 under Events
By Samantha Barrett, Special Events Coordinator This past weekend, RSDSA participated in their final Achilles Walk. We have been doing the Achilles Walk as an organization for over a decade. The event has run its course. We have decided we need to move on and change things up a bit for the CRPS/RSD community. For me personally, this was my third Achilles Walk. I attended my first Achilles when I started interning for RSDSA. That first year was absolutely beautiful. It was my first time staying in New York and seeing Central Park. I met so many people and made so many lifelong friends. It was amazing to me that, after 8 years with CRPS/RSD, I was still learning so…
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