Category: Fundraising

Written 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 imagined how gorgeous and incredibly large this hotel would be. There were waterfalls, restaurants, boat tours, and sky walks throughout the hotel. A beautiful site. We knew our pre-conference reception would be taking place at the Delta Atrium on the Delta Pavilion. That was one of the first places we tried to find upon arrival. When we did find it, we were amazed by the beauty of it. A fabulous gazebo surrounded by lights and plants made for a great reception space. We were excited to get the day going.

Our pre-conference reception was a huge success. More people than ever before showed up to our Nashville reception. We had music, a silent auction, food, and plenty of time to chat with one another. Bonds were being made instantly as people passed into the atrium, beyond the registration table. People that had never met before were becoming instant friends. This is why we find our receptions so important- they really help us help you create support systems and find sources of hope within other people with CRPS, caregivers, and medical professionals.

After a long day, we all retired to our rooms to prepare for the big day- conference day. RSDSA staff and board members were up bright and early preparing the conference room and exhibitor lobby. Exhibitors came from all over the country to help members of the CRPS community with everything from legal issues to insurance and everything in between. As 7:45 a.m. approached, everyone started arriving. Red name tags from people with CRPS, blue name tags for caregivers, loved ones, supporters, medical professionals, and anyone in between. Our conference was completely sold out. We had a fabulous line up of speakers and panels aimed to help everyone in attendance. The day went by smoothly and the presenters did wonderful jobs. Our caregiver panel brought out tears through the room and reminded us all about the true importance of caregivers and how caregivers need support, too. Our faculty Q&A panel helped us shine a light on important issues and really got our gears going. Thank you to Dr. Terri Lewis, Dr. Pradeep Chopra, Dr. Benjamin Johnson, Tammy Gipson, Omega Kimoto, Gracie Bagosy-Young, and our caregiver panel members for bringing such important topics into the spotlight. Our videos from this conference will be up within the next couple of weeks. We will share these videos when they are up to give the other members of our community a chance to hear these great presentations.

One of the best things I saw this weekend was true friendship and solidarity among CRPS warriors and caregivers. I saw people coming out of the room to take a break with people they hadn’t arrived at the conference with, but acting as though they had been friends for decades. I saw people rushing to hold doors open for those of us with assistive devices. Tears were shed, hugs were given, and hope was abundant. We had several people that hadn’t met others with CRPS before, despite being diagnosed for years. As a matter of fact, for one conference attendee, I was the first person with CRPS they had ever met. While none of us would wish this on anyone, it is an overwhelming feeling to meet someone that understands your experiences. It is life changing. With every conference we hold, my heart grows even more, as my own network of people that understand my experiences expands.

This conference was fabulous for so many different reasons. We had several people without CRPS stop to ask us about what it was, how they could help, and where they could find more information. We had a news station feature an article on our conference, which can be found here. But most importantly, we helped provide education, support, and hope for over 150 people in a sold out ballroom at the Gaylord Opryland Resort and Convention Center.

Thank you to all of our attendees, sponsors, and to Omega Ann Kimoto and Larry Vondrasek! You made this a truly incredible weekend.

Our next conference is April 30 in Fayetteville, AR. Feel free to join us there to help us create even more memories and make more strides towards progress. Click here to register!

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, the day 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, it is even listed on the National Day Calendar! This has become one of the most important days during CRPS Awareness Month.

If you visit the Color the World Orange™ Facebook page, you can find listings of all the different landmarks and buildings that will be illuminated orange to help raise awareness. It is a great resource to learn how you can make a difference. There is a resource for getting your local media involved as well as details for getting a proclamation made for your city or state. Currently, the states that have granted CRPS/RSD proclamations include: Arizona, Arkansas, Delaware, Georgia, Illinois, Indiana, Louisiana, Michigan, Pennsylvania, Tennessee, Texas, Washington, West Virginia, and Wisconsin. Several cities and counties also have granted proclamations, which you can see by clicking here.

Color the World Orange™ also acts as a great fundraising project for CRPS/RSD. Done through FirstGiving, Color the World Orange™ donates all their proceeds to RSDSA. To create a page, or to donate, you can click here.

What Can I Do To Help?

Contact your local media by using the template found on the Color the World Orange™ Facebook page.

Download the Color the World Orange pamphlet here.

Download the Color the World Orange sign here.

Purchase items through the Color the World Orange Zazzle store.

Purchase a Color the World Orange Bravelets item through this site.

Spread the word on social media using #CRPSOrangeDay

 

Here is a list of the buildings/places that will be illuminated orange for Color the World Orange™:

UNITED STATES

Alabama
Retirement Systems of Alabama Building in Mobile, Alabama – Nov. 7
Retirement Systems of Alabama Building in Montgomery, Alabama – Nov. 7

Wrtten by Samantha Barrett for the RSDSA blog.

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 every hole Zach completed, these donors would give a certain amount. Other donors gave one-time donations towards the event. We are still accepting one time donations for this event. Donations can be made via check or PayPal, which you can find the details for here. Be sure to note somewhere that the donation is for “LDOG.” Feel free to email us with any questions or to alert us of your donation. Send emails to [email protected]

It was the perfect fall day at the golf course. Golfers started in the early morning and went until they couldn’t go anymore. The day started remembering Arnold Palmer, who had passed the evening before the event. Once the event kicked off, we were able to post updates to our social media accounts including Facebook, Twitter, and Instagram. We also used #RSDSALDOG for all of our social media posts.  Zach, predicted that he would complete 45-54 holes. In the end, Zach completed 72 holes! That is dedication.

Due to the success of this event, RSDSA hopes to have more Longest Day of Golf events all over the country. As more events pop up, we will continue to share them on our social media pages and through email blasts. Sign up for our emailing list by clicking here.

Zach was interviewed by Channel 12 News during the course of the day. Click the link to see the clip!

RSDSA would like to thank Zach Baron, Innis Arden Golf Club, and all of our donors! You all contributed to the success of this event!

“Golf is a matter of confidence. If you think you cannot do it, there is no chance you will” -Henry Cotton

 

Interview Conducted by Samantha Barrett for the RSDSA blog.

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?

Zach Baron: My name is Zach Baron and I’m currently the Director of Sales at one of golf’s leading technology companies, Arccos Golf. We create technologies that allow golfers of all skill levels to maximize their potential and optimize their enjoyment.

SB: What sparked your interest in golf?

ZB: I started playing golf competitively in high school, which is when I really fell in love with the game.

SB: Wow! That’s great. How did you get into the professional golf industry?

ZB: I attended Coastal Carolina University, where I graduated with a Business Management degree and a minor in PGA Golf Management. This ultimately led me down a path of building a career in the golf industry. I started my professional career as a golf instructor, working for Hank Haney (Tiger Woods’ former golf coach) and also Nike Golf.

SB: That’s quite the path to a great career! What is your favorite thing about the sport in general?

ZB: I enjoy the challenges around golf. It’s really a difficult game, but when you’re able to put all the pieces together, it’s truly a rewarding experience.

SB: Have you ever participating in a golf fundraiser like LDOG before?

ZB: I’ve participated in many golf fundraisers over the years and look forward to helping another great cause [through] RSDSA.

SB: We’re so glad to have you! What made you want to help RSDSA by participating in the Longest Day of Golf?

ZB: I was presented with the opportunity to participate in this event and after learning more about the cause, I couldn’t say no!

SB: What do you think the most challenging part of the day will be?

ZB: Being able to stay focused throughout the entire day will be challenging. Playing this much golf can be very draining mentally and physically.

SB: How many holes do you expect to complete?

ZB:  I’m thinking between 45 and 54 holes will be a reasonable number!

SB: What do you hope that your participating in this event will lead to?

ZB: I hope that my participation in this event will raise a lot of money that will go towards RSDSA and ultimately will help more people battling [CRPS/RSD].

RSDSA would like to thank Zach for his hard work and dedication to the cause. Stay tuned to the RSDSA social media pages to get updates on how Zach is doing through the day.

 

You can continue to make a pledge per hole until noon Eastern on September 26 and can make one-time donations through the evening that day. To make your pledge, or to find out more about how to make a one-time donation, please email Samantha Barrett at [email protected].

By Samantha Barrett for the RSDSA blog.

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 have been so inspired by their hard work and dedication, I asked to interview them for The Tuesday Burn. Here we go!

Sammie Barrett: Hi ladies! Can we start with an introduction and maybe a bit of your story?

Millie: My name is Milagros Cabrera. 3 1/2 years ago, while at a pistol range, I was hit in the left wrist with a piece of bullet. Shortly after, I was diagnosed with RSD/CRPS. I had no idea what that was, but I did know it was serious. Doctors explained it was nerve damage due to the bullet entering my wrist. I could only remember them saying it was a chronic condition with no cure, just maintenance. I was so scared. I became more frightened by the symptoms. I lost feeling in my hand/wrist, I felt this burning sensation in my arms and hands that traveled into my shoulders & back. It eventually traveled to my right side as well. I had this thing that I couldn’t control called RSD in all of my upper extremities. I felt weak and sensitive to touch, as well as temperature and texture changes. I thought: “What the hell is happening?” I begged, pleaded, negotiated, and fought to make it go away, but it didn’t. I asked God: “Why? Why? What is this?”  No more hot showers, no more cooking that I loved to do, no more cleaning, and no more dancing or hiking. How my hand and body were on fire and the muscle spasm was scaring me. I said to myself: “I can see this as a monster and fight it, or [I can see it] as my friend and hang out with it.” So, when I’m on fire, it is “the monster” and when it gives me good days, it becomes my “best friend.” I decided it wasn’t going to control my life.  I started physical therapy, acupuncture, aqua therapy, massages, swimming, and walking, which has helped me a lot. [All of this is] in addition to the medication and pain management. Through my journey, God allowed me to meet a lot of wonderful people, whether I met you at a park, pool, doctor’s office, or in a parking lot.

Debbie: My name is Debbie ONeal and I was diagnosed 13 years ago with RSD/CRPS.  I had never heard of this condition before and there was not much information on the internet.  In my search for information, treatments, and explanations that I could understand, I came across RSDSA a non-profit organization.

Beth: My story began 9 years ago post a fall at work. As a RN, I didn’t think it would be a life changing event. Have surgery and some physical therapy and WHALA….back to my old self. I couldn’t have been more wrong. That’s when the nightmare started. Waking up in the Recovery Room, all I could do was scream in pain. Not from post-op pain, but from intense, non-describable, unrelenting pain. For 6 months post-surgery, I went for more tests, procedures, consults, etc. in attempt to find an answer. Why was I having muscle spasms, electric sensations running up and down my leg, sensation of glass cutting my leg during a shower, [the] inability to have bed sheets touch or cover my leg, swelling, bluish nails/toes, excruciating pain from wind/breeze, the inability to wear socks or shoes, and forget about a touch including the physical therapist working on my leg? This isn’t pain, this is TORTURE. Never in my life have I ever felt this. unrelenting, neuropathic sensations that are not usual to what post-op healing should feel like at all. The struggle to get help from this strange thing happening to my body became a mission for me and my family. With my husband, Glenn, and kids, Danielle and Evan, witnessing my body being tortured, [there are] NO words. Not being able to care for my kids, take care of the house, be a wife, work, or just function has been the most distressing part.

Finally, the diagnosis of CRPS (Complex Regional Pain Syndrome) formally known as RSD (Reflex Sympathetic Dystrophy) after 6 months finally arrived. YAH, now we can move forward. I can work with this. That didn’t last long. Years of hospitalizations, procedures, medications, therapy, PT, etc. created a plethora of emotions. From fear, grief, sadness, loss, and total frustration, I had to work through reinventing who I was, to who I am now. NO longer was I the “independent” strong nurse and mother caring for others. Now, I was the one in need of support and assistance. With every complication from CRPS, despite whatever I tried to do, this condition wreaked havoc on me systemically. So hard to believe this “monster” inside me could affect my body this way. Yet, I won’t give up.

SB: You are all an inspiration. It’s amazing how a monster such as CRPS can bring people together. What inspired you to partake in the Long Island CRPS/RSD Awareness Walk?

M: I first spoke to Jim, the director [and Executive Vice President] of RSDSA when I was in my state if fear, panic, and confusion during my early diagnosis. He is wonderful. He had me talk to a women named Lynn. God, she was my guardian angel. All I could say to myself [was]: “How did God send me these two wonderful people who really care about me?” Thank you, God, because I didn’t want to check out, I was just so afraid. They checked up on me monthly to make sure I was hanging in there. Thank you to you both. When I got a little better, I met Jim at TGI Fridays in Manhattan. I told Jim I wanted to organize a walk in Nassau county where I live. I told him I didn’t wanted this to be a secret anymore. I wanted everyone to know about this condition. I was tired of the isolation and [I was tired] of individuals looking at me like a monkey in the window, or not believing, nor understanding what RSD was. I asked him to let me pioneer this walk. I needed to organize this walk for my psychological [health] as well. I had to learn to accept my condition and stop seeing it as [if] it existed outside of me. I wanted my friends, family, love ones, and others to know about this condition and how difficult it is to have it. I went to Eisenhower park and applied for the permit. At that time, when I pick up the application for the walk permit, I was hysterically crying and Ms. Hood, who issued the permit, was speechless. She couldn’t understand why I was crying. I tried to explain while the tears rolled down my face. I said to her: “I have this thing called CRPS/RSD and I have to do this for me and for others.” She didn’t even know what it was about, but she was sympathetic to me. I then spoke to you [Samantha]. You have been my cheerleader and in my court, even during the times of my confusion and my 100 questions. At times when I became discouraged, Samantha constantly encouraged me and reassured me that everything would be ok. Every time I talked to [Samantha] about doing the walk, I would always cry and she comfort me. Samantha was right. We are here today, ready to do the walk! Thank you. Then, I networked with two other wonderful women, Beth and Debbie, who have CRPS. They were willing to fight, just as I was. They were willing to work as hard as I to break this secret and to share [information about this condition] with others. Even during or most difficult times- tired, sick, in pain, sad and happy we have stuck together to make this possible. I’m so thankful for them.

D: I will always be thankful for the amount of time Jim took to talk to me and the material he sent me on RSD/CRPS. I wanted to get involved with this walk is to raise Awareness of what RSD/CRPS is.  Imagine going to a hospital and you’re in extreme pain & the slightest touch can cause you to cry and you are treated like a drug addict because you look fine.  Not all of us who have RSD/CRPS show signs of the condition all the time.  We need to raise funds so that doctors, nurses, & other health care professionals are educated on what RSD/CRPS is. [Medical professionals need to know] how it effects our whole body because it is our sympathetic nervous system that is damaged. We need protocols to be put in place for patients who have RSD/CRPS. RSDSA goes around the country and helps to educate health care professionals. They donate money for research, they help fund a summer camp for children with RSD/CRPS among other things. Most importantly, they have always been there for anyone with RSD/CRPS that reaches out to them for help.

B: I wanted to support RSDSA. They are on the forefront of advocacy, education, and research for those suffering from and disabled by CRPS. I wanted to help by raising funds through a walk, roll, or run. RSDSA was there for me 9 years ago. Now I want to get the word out on the RSDSA mission: “To provide support, education, and hope to all affected by the pain and disability of CRPS/RSD, while driving research to develop better treatments and a cure.” It is a great forum to bring together those with CRPS as well as health professionals who may or may not know what CRPS/RSD is or what support is available through RSDSA. Plus, CRPS can be very isolating and frustrating. The walks help decrease that feeling.

SB: Well, this is certainly going to be an incredible day. What can people expect to experience at the Long Island CRPS/RSD Awareness Walk?

B: There will be so much at this walk. First and foremost, everyone will get to meet and network with other people that live with CRPS [or care for people with CRPS]. Not just adults, but children also! The 5K walk is for those without mobility challenges [although anyone can participate in the 5K]. The 2K path is better for those with mobility challenges. This path will be surrounded by educational signs, will be decorated in orange, and will have people cheering them on as they participate. There will be speakers, food, music, resources, and most importantly A LOT of fun! We are kicking off the event at 8AM with registration. At 9AM, there will be a few brief presentations, including some by doctors and by Senator Michael Venditto as well as an Assemblyman. We will also be presenting awards to a few people and will be presenting Jim Broatch with a check. At 10AM the walk, roll, and run starts, just make sure you’re ready for our group picture! Then, from 11AM until 2PM we will be barbequing! Join us for our picnic, check out the vendors and sponsors, participate in our craft, get your face painted, and don’t forget to buy your raffle tickets! There will be so much support there. Even seeing everyone wearing the event shirts will impact you. We all hope you leave with a better understanding of CRPS/RSD, what is available, and RSDSA.

SB: Talk about a can’t miss event. What are some of your goals for the walk? What do you hope people will take from this event?

M: The goal is to raise money for education, research, services, and a cure!! It will be a great experience. You will meet other people with CRPS/RSD and their loved ones. You get to build your network [and support team]. This will be a FUN walk!

D: Walks bring together people who have been diagnosed with RSD/CRPS and their families. It gives them the opportunity to meet others who suffer from the same condition. Even though you wouldn’t wish this on anyone, it is nice to know you are not the only one. There is the opportunity to make new friendships.

B: Our goal is to raise $25,000 for our first annual walk. We want people living with CRPS, families, the medical community, and legislators to gain a better understanding of what CRPS is and how it is different for every individual! We want there to be a better understanding of what chronic pain patient with CRPS look like. What you see isn’t what it is. We want everyone to feel the compassion, understanding, and empathy that this community has for one another. You are not alone!

SB: Absolutely powerful. Now, sometimes it is difficult for people to be able to commit to a walk because they don’t know how they will feel that day. What would you say to someone that is on the fence about joining this walk?

M: You are not alone. We are all a family. Don’t give up, [even though it can be] easy to do that. It is harder to fight. But RSDSA is a wonderful organization, they will help you. Don’t be afraid. Most importantly, build your faith in God, he will never fail you. I’m thankful to God that I’m still fighting and thankful I have met wonderful people during this journey of my spirituality and faith. This will be a fun event.

D: This is going to be a wonderful day. A community of people are being brought together by an awful illness, but we want to make sure everyone has fun. None of this can be accomplished unless we go out and do these fundraising/awareness walks. If people aren’t aware of the condition, we have to make them aware!

B: This isn’t about being able to walk. I can walk, but walking is an issue and I will have my decorated wheelchair. The first RSDSA walk I attending was in New York City 2 years ago. Because of the distance, traveling was difficult. Yet meeting others with the same condition brought so much comfort and peace to me. Surrounding yourself with a sea of orange will be truly inspiration. We have nothing to lose and everything to gain, including taking charge of our health. By joining, you are not only helping yourself, but helping RSDSA to help others challenged by the same condition affecting both adults and children!

SB: If someone wants to join, but doesn’t have a team to join, could they join your team?

M: Yes! Please join us in the fight! Look for my team on FirstGiving. My team name is “The Cabrera Trotters.” You can also look me up by searching Milagros Cabrera. Let’s get walking!

B:  Feel free to join my team if you don’t want to start your own. My team name is: “SEICKEL Warriors.” Remember, under 5 years old, children are free! 6-12 year olds are $10 and over 12 are $25. Online registration ends August 28 at 11:59 PM Eastern Standard Time. Don’t forget, if you can, set up a fundraising page when you register!

SB: To you, what makes CRPS/RSD awareness events so important?

M: We become educated [even more] about this condition and get the resources that we need to cope. We meet other walkers and form connections.

D: These walks bring everyone together. It helps people with CRPS/RSD not feel alone. We can make a difference within our own community!

B: These events help us explain to family, friends, and the medical community that CRPS is a real medical condition deserving of support and education. CRPS is a complex disorder that requires a team approach to treat. Events enable CRPS patients [to come] together. They understand your challenges of living with chronic pain. These events help break some of the myths and stigmas surrounding chronic pain patients.

SB: That is all true. There is nothing like a CRPS/RSD event to take your breath away. The hope is definitely strong at these events. If someone wanted to volunteer, who could they contact?

B: They can contact me [Beth Seickel] at [email protected] or at (516) 972-7087. They can also contact Millie at [email protected]

Thank you to the ladies of the Long Island Walk Committee for taking the time to answer my questions. Some of the responses were edited for clarity. Make sure to join the walk by visiting  Sign up before registration closes to guarantee yourself a shirt and a special surprise. Click here to register. If you own a business, or know a business that would like to sponsor, please email Samantha at [email protected]. Don’t miss out on this fantastic opportunity in Long Island. Not only will there be a walk, but there will be plenty of vendors/sponsors that could be great resources for you. There is a dental practice that treats people with CRPS, representatives from St. Jude Medical, The Coalition Against Pediatric Pain, a compound pharmacy, and more!

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 much from others with CRPS/RSD. I remember the feeling that surrounded me and everyone else that day- hope. Being around so many people that have an understanding about what you’re going through is life-changing. Prior to this walk, I could count on one hand how many people I knew, personally, with CRPS/RSD. Now, a vast majority of my contacts in my phone and on social media have CRPS/RSD. I still stay in contact with most of the people from that first walk today.

Last year’s walk was a little different. It was cold and damp. It was enough to give you a bone chill (and a terrible cold). We didn’t know how many people would come out in the rain. But, as usual, the CRPS/RSD community showed its strength. People still came out to make the most of a dreary day. There was still so much hope and love. I got to see the people I had met at the previous year’s walk. As I observed, I saw that it was like a reunion. People were hugging (gently), saying hello, chatting. The CRPS/RSD community is like another family. You may not see these people every day, but when you do, it is like nothing has changed. While everyone is living with their own pain, everyone still asks how each other is doing. We all have a special radar that can tell what someone’s response to the question “How are you doing?” really means. If their response is along the lines of “I’m okay,” with a forced smile, you know that they are having a rough day and you watch out for them and make sure that they don’t overdo it. Most of the time, we don’t even realize we are reading each other, we just know what responses mean when we say them. This walk still ended up being a success. We were all freezing by the end, but we had to see each other.

This year, I was nervous leading up to the walk. As many of our participants know, we had some complications along the road to Achilles that we couldn’t anything about. When we decided this would be our last walk, I wanted to make it as fun as possible. We got awards donated to us from Crown Trophy, we had snacks and water, and we encouraged people to come out and be as festive as possible. Our location got moved to a different part of the park and our walk route was changed. I wasn’t sure how many people would show up because of the frustration (and understandably so). But as always, the CRPS/RSD community is stronger than we even realize and can overcome any obstacle. Checking people in that day was wonderful. I was able to put faces with names and able to introduce myself in person instead of through the internet. We had so many people there that I was only able to leave the registration table 2 minutes before the 1.5 mile walkers were about to leave. I had to get a group picture! Sorry to all of the 4 mile walkers that were not in the picture! But there were so many people. And the energy was just as great. People were meeting for the first time, reuniting with others, giving advice to newcomers, and soaking in the day. I was able to get to talk with so many of you and make more lifelong friends. I left last in line for Team RSDSA. We were held in a staging area while we waited for the walk. I made my way to the front of the line so I could get decent pictures and help lead people where they had to go. Let me just say, WOW. There were so many people with us. I only saw RSDSA shirts when I looked behind me. It went back as far as I could see. While we were limited to 150 walkers this year, I think we had the largest team at the walk. It makes me so incredibly proud to be a part of this community, not only as an RSDSA employee, but as a person living with CRPS/RSD.

Towards the end of the day and into the work week, people were realizing that was the last Achilles. It was heartbreaking to hear and read how upset people were. But then it occurred to me that no matter where we go, our community will show up. We are strong and support one another. We will have a walk to take the place of this event, just in a different location. If we just consider whatever event takes its place as the new “go to” event, it will be just as great. No matter where we are in the country, the CRPS/RSD community shows up to support each other. While change is always something that is difficult to adapt to, this change will be great for RSDSA and the community.

To all of the friends I have made over the past 3 Achilles Walks, thank you. Each and every one of you inspire me in a new way, every day. The strength that you all show and the support you all provide is so important to keeping hope going within the community. We are the future, we can make a difference.

We wanted to thank everyone that has participated in this walk with us over the past decade. Your dedication and support has been incredible! We hope you keep all of the connections you have made and stay in touch with them. If you want to attend another walk, please keep checking our RSDSA Events page. We have events coming up in Pennsylvania, Minnesota, Maine, New York, New Jersey, California, and Tennessee. Be on the lookout! We hope to see you all at events in the future.