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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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Team Caroline: A CRPS Story of Hope & Of Giving Back

Published on June 14, 2016 under Events
By Caroline Bert, Guest Blogger for RSDSA Caroline is a CRPS/RSD warrior that has been fighting for about 9 years. Now, Caroline is doing what she can to defy CRPS "limits" and to make a difference in the CRPS/RSD community through fundraisers. My name is Caroline Bert and I am 21 years old. In 2007 I broke my left wrist, when the doctor took my cast off my arm was crooked. After 11 months of many doctors ruling things out, my diagnosis was Reflex Sympathetic Dystrophy. Dr. Neil Kirschen treated me by a series of 3 stellate ganglion nerve blocks , and then on the first treatment of the second series I woke up with full relief. I went into…
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Crazy Sock Walk Raises Awareness for CRPS/RSD and More

Published on January 26, 2016 under Events
By Samantha Barrett, Special Events Coordinator For the past few years, I have participated in Crazy Sock Day. I am a lover of crazy socks and have quite an inventory of them, so every day is Crazy Sock Day for me, but on January 24 it is embraced by the invisible illness community. I had heard it was for a young girl named Melanie who had several of the invisible illnesses that I did. As the years went by, I learned more about this young lady’s story. January 24 is her “painiversary.” To raise awareness and bring a little bit of sunshine to this girl’s life, Crazy Sock Day was started. It quickly took the CRPS Community by storm through…
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Crazy Sock Day for CRPS Awareness

Published on January 19, 2016 under Events
Interview by Sammie Barrett, RSDSA Special Events Coordinator. For the past six years, there has been a day in which people wore crazy socks to raise awareness for CRPS/RSD awareness. I heard about it in its second year and encouraged my friends and family to participate. We would post pictures of our crazy socks online to our personal Facebook pages and to a page dedicated to this Crazy Sock Day. Last year, the first Crazy Sock Walk happened in Melbourne, Florida. It is happening again this year. The masterminds behind this: the Dickens family. Melanie is teenager living with CRPS/RSD among other invisible illnesses. Her mother, Laurie, is one of her biggest advocates. I was able to interview them this…
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An Update on the Walk to Conquer Pain

Published on November 10, 2015 under Events
  By Samantha Barrett: The Walk to Conquer Pain kicked off this past Saturday. It grew even more over the weekend. I love seeing how much this walk grows every day. I wanted to just clarify a few things for everyone. Since this is a new website and event, I am learning as we go as well. To sign up for the walk you can go to: https://walk-to-conquer-pain.everydayhero.com/us/get-started. This will create your fundraising page that you can share online through email or social media. All you have to do is copy the web address at the top of the page. It is similar to a FirstGiving page. If you would like a template of an email/post to send to your…
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