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New Year, New RSDSA Goals – Helping the CRPS Community

Published on January 3, 2017 under Call to Action

RSDSA hosted the first Ketamine: The State of the Art and the Science Conference in 2016 for CRPS / RSD By Samantha Barrett, Special Events Coordinator

Welcome, 2017! So many of us were ready for a new year. With the new year comes expectations of resolutions, bettering oneself, and change overall. Not only is RSDSA no different than everyone else, but we also want to help people reach their goals/resolutions and then some!

As you may have seen in our emails, we have a set of initiatives for 2017 here at RSDSA. They include:

  • Co-sponsoring Camp for Courageous Kids- a camp for youngsters in pain for our third yearRSDSA cosponsored pediatric pain week at CCK for kids affected by CRPS RSD EDS and more
  • Continuing to transform lives with our “Treating the Whole Person Conferences,” the next one is scheduled for Nashville in April 2017, as well as utilizing our live-stream
  • Implementing our first statewide three-part Webinar for The Nursing Association of CT and the ARNP, Nurse Practitioners, whose pilot will be replicated nationally
  • Providing the CRPS community with cutting-edge scientific information readily available via our website and conference videos
  • Fostering self-advocacy with mentoring and peer-to-peer counseling
  • Updating a comprehensive resource compendium for individuals struggling to survive financially and to improve their quality of life
  • Continuing our college initiatives for students with CRPS, including publications geared specifically for them
  • Hosting a first-ever retreat for young adults, a pilot program which we plan to replicate nationally
  • Developing a reference protocol for professionals utilizing IV ketamine to treat intractable CRPS
  • Partnering with medical device manufacturers and pharmaceutical companies in their clinical trials
  • Offering complementary approaches to healing through our educational conferences
  • Facilitating support groups and raising awareness, promoting events across the country

So, how can you help this new year?

  1. Follow us on social media to stay up to date with all things RSDSA. You can even share our updates with your social media friends and followers to help us spread the word. (Facebook, Twitter, Instagram, Pinterest, YouTube)
  2. Donate to RSDSA and encourage the people you know to donate to help us work towards our initiatives
  3. Attend RSDSA events- whether they are our educational conferences or our walks throughout the country, being at these events is so important. For many members of our community, it is the first time they meet others with CRPS/RSD. You can find out more about our events, such as our Nashville conference, on our website or on our social media pages. Some events are exclusively online, which makes it fantastic if you cannot make it out one day.
  4. Adopt Penny Pig. Penny Pig helps us with our kids’ camp. This camp is for children living with various chronic pain syndromes, including CRPS/RSD. We co-sponsor this camp and have been lucky to do so for the past couple years. All you have to do is send us an email at info@rsds.org and we will send you a pig. We ask that you collect change and spare cash and send it in (via check or PayPal) and we will apply it towards the camp. You get to keep the pig.
  5. Sign up to be a part of our 20-year study. This information is incredibly valuable to us and will help us learn even more about CRPS.
  6. Hold a fundraiser. Contact Samantha, RSDSA’s Special Events Coordinator, to start planning your event. She will help lead you in the right direction. Whether you want to plan a walk, dance-a-thon, restaurant night, sales fundraiser, or anything else that you can dream up, we will do our best to help you!
  7. Join or start a support group! Meet others with CRPS/RSD and become a part of each other’s support network. Information can be found on RSDSA’s website and by emailing info@rsds.org
  8. Share the link to RSDSA’s accredited courses with your team of doctors and nurses. They will get credits that they need while learning more about CRPS/RSD.
  9. Submit a blog for RSDSA’s hit blog series, #TheTuesdayBurn. Is there a topic that you’ve wanted to write about, but haven’t gotten a chance to do yet? This is your year! We ask that all potential guest bloggers send an email to info@rsds.org with their blog idea(s) and any sample of writing they’ve done in the past (if applicable). We will provide more information from there! You can also submit stories to The Mighty, whom we have partnered with over the past year. They link stories about CRPS/RSD back to RSDSA so people can find us as a resource!
  10. Watch RSDSA’s YouTube videos and Livestream. YouTube features educational videos from past conferences while we Livestream conferences as they are happening. Our Livestream is very interactive and allows you to take part in the conference, even if the conference is in Tennessee and you live in Washington!
  11. Donate extra medical equipment you have to our medical equipment exchange. Someone out there is looking for a wheelchair, a cane, a scooter, and even other things that you may have extra of. If you just upgraded to a different device, put the old ones to good use!

People and Paws for a Worthy Cause was put on for RSDSA in 2016 to help those with CRPS RSD

Elly Thompson held another event for RSDSA and people affected by CRPS / RSD in  2016

RSDSA had a conference in La Jolla, California for people affected by CRPS RSD. Here are Taylor Mullens, Samantha Barrett, and Kerry Hussey at the conference

CRPS Awareness Walk in New Jersey for RSDSA in 2016

RSDSA held a conference for medical professionals about the use of ketamine in people with CRPS RSD

 

 

 

 

 

 

 

Do you have another idea on how the RSDSA community can help us reach our initiatives and can help make their 2017 a better year? Send us an email or comment on our posts! We’re always interested in hearing your ideas.

From all of us at RSDSA, we hope you have a great 2017 and we hope to see you out at one of our events!

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