Fundraising - RSDSA

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

June 14, 2016

Written by Caroline Bert for the RSDSA blog.

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 a 3-year remission until 2011 when I re-injured my left wrist working as a hostess at a restaurant. We tried the nerve blocks, but because my nerves were already scrambled from the previous blocks it had an opposite effect, causing a flare up during the procedure.

It was time to explore other options. Calmare treatment was unbearable, acupuncture was as well, and physical therapy was torture. With high hopes I stepped into Dr. Brian Durkin’s office, I put all of my trust into him and it was the smartest thing I have ever done. Dr. Durkin is the best doctor on the planet. He has made it possible for me to accomplish more than I could’ve dreamed. In 2012 I had my first ketamine-lidocaine infusion at Stony Brook Medical Center. After waking up from the infusion my pain level went from a 9/10-2/10. I was able to take the brace off of my arm and I could even touch it. This is something that I had not felt in a long time, and it was relief.

What I liked most about Dr.Durkin was that he encouraged me to live how I wanted to, and gave me the all the help I needed to do that. Many doctors would say that being a dancer with RSD is very dangerous. I was told to stop dancing and one doctor even told my mom that “saying your child with RSD wants to be a dancer is like saying that your child the hemophiliac wants to work at a glass factory.” But Dr.Durkin said that dance was a form of physical therapy for me. And that as long as I knew my limits and listened to my body, I could be a dancer even with RSD. He told me that most people who have had RSD will have it spread to other parts of their body, but me being active was preventing that. He never told me to quit doing what I love.

In 2012 I went away to SUNY Potsdam as a double major dance and photography, however due to the cold weather and a fall on the ice I developed RSD in my right wrist that winter. I came home and then went back to Potsdam. I loved Potsdam but it was not a good place to be with RSD. The doctors were unfamiliar with it, a trip home takes all day, and the cold weather makes it worse. In 2014 I came home for good. The RSD in both wrists was at the worst it has ever been and every time I came home I had to miss more school, it was not worth it. After coming home, I was able to see my doctors regularly, I was always able to get my prescriptions refilled on time, and I had my family around to make sure I was okay. I took classes at Nassau Community college while figuring things out. coming home was hard but it was what I needed. I got 4.0 in every class, and started working for the New York Yankees as a fan photographer. I get infusions every 6 weeks and I am able to do everything I love to do, to live a somewhat normal life under these rare but difficult conditions.

My first Achilles walk was in 2012 (The year I graduated High School) and my shirt read: “RSD won’t stop be from being a dancer, a photographer, or graduating” It was amazing to meet so many others that could understand what I am going through.

This year my mom and my friend Annette wanted to raise more money for the walk than we ever had in years past. They took on the task of planning my fundraiser, because they love and support me so much. We held the RSD/CRPS Fundraiser on June 3rd from 8-11 at a local bar called “J.Pauls Terrace Cafe”. My dad Glenn Bert and friend Annette Quinn were guest bartenders and 20% of what was made at the bar during the fundraiser was donated to the walk. We also sold raffle baskets and 50/50. We had an outstanding turnout and live music by my cousin Jake Incao. It was an amazing night and I could not help but feel blessed because as I looked around at the crowd in the bar that night I was reminded what an incredible support system I have. We raised over $2,500 that night, and the donations keep coming from some friends that were not able to make it. I would say that the fundraiser was very successful because although it is great that we raised so much money, I think it is even better that we raised the awareness in my community. During the fundraiser so many people asked me questions about what RSD is and I was so happy to educate them because next time they meet someone with RSD they won’t have to ask “what’s that?”

So, while we made a lot of money we ultimately achieved our goal of raising awareness in the process. My support system took on this entire project of creating a fundraiser on their own. It was put together by the people who have seen me at my worst and still love me. They organized raffles, donated their time and services, and advertised the event as much as possible. If people would like to donate to Team Caroline, please click this link.

Crazy Sock Walk Raises Awareness for CRPS/RSD and More

January 26, 2016

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 the Internet. Five years into Crazy Sock Day, Melanie and her family held the first Crazy Sock Walk. This year, I was lucky enough to attend the second Crazy Sock Walk on the day of the 6^th Crazy Sock Day.

Melbourne, Florida is absolutely beautiful. A sight that was even more beautiful was all of the bright, outrageous socks that were on each person in Westbrook Park when I pulled up to the start of the walk. Thigh highs, knee highs, baby socks, fuzzy socks, every type of sock you could imagine made an appearance on at least one person. Some people wore two socks on each foot to make their socks look even crazier. When you see a large group of people all wearing neon socks blatantly on display, it certainly catches your attention. This year’s walk was dedicated to Hannah Bernard, a CRPS Warrior that left us too soon.

The sidewalk was decorated with chalk and anyone could contribute to it. The first thing to catch your eye was the Crazy Sock Walk chalk design on the ground. As you look around the park, you’d see signs on each side of the sidewalk, every few feet. Each of these signs offered different facts about the different conditions that the Crazy Sock Walk/Crazy Sock Day raises awareness for. CRPS/RSD, EDS, Mito, Gastroparesis, and other invisible illnesses were all being acknowledged. There was a beautiful, professionally made, banner for the Crazy Sock Walk. When you walked beyond that, there was even more going on! To the left, there was an information table for RSDSA and the US Pain Foundation that also featured information about Melanie’s story. There was also a food and drink station and an area for baked goods. Straight ahead there was a silent auction table, primarily featuring photographs taken by Melanie. There was also a raffle table featuring various gift cards from local businesses. To the right, there was a station to design your own crazy sock on paper to hang up as well as a place to play games such as corn hole and hula hoop.

I was instantly greeted by Melanie’s mom, Laurie. Instantly, you felt like you have known her forever. Hugs were given all around and the chatting came naturally. I then met Melanie’s father and the photographer of the day, Shawn. Melanie then came over and greeted me with one of the biggest hugs I have ever gotten. She was excited to show me around and to talk. We both have a love for crazy socks, and she was proud to show off both pairs and tell me what a goose chase it was to get the thigh highs. I then met her sister, Alyssa. Alyssa went to school to become a physical therapist and continues to further her education. She brings as many people with her as possible, most of which she met at school. People traveled from all over Florida to come show their support for Melanie, her family, and to make a difference in the lives of those living with invisible illness. The love and respect Alyssa has for her little sister is obvious. She wants to make a change just as much as Melanie does. Melanie’s brother, Jack, and grandmother were working the auction and food tables. Everyone in Melanie’s family played a huge part in the success of this event.

Before the walk kicked off, Alyssa and Melanie said a few words, gave out some prizes, and announced the winners of the raffles. The awards were given to people with the best socks. I happened to receive best animal socks and got a golden duck trophy. Super cute and very thoughtful. Walking through Melbourne, we certainly got the attention of the cars around. Everyone made sure their socks were easily seen. It’s hard not to notice a giant group of people with brightly colored, funky socks. It is the perfect way to get someone’s attention and make them ask questions.

Although my time with the Dickens family was short, I could feel how much they want to make a difference. They are doing such a fantastic job. My Facebook news feed was full of Crazy Sock pictures, even for the people that couldn’t make it to the walk. Awareness is so incredibly important and getting even three people to participate spreads awareness that much more. Those three people can tell another three people each and start a chain reaction. This family acts as a unit and I know they are going to do fantastic things; they already have. Six years of Crazy Sock Days and Melanie is now only 16 years old. Can you imagine what is to come?!

This just goes to show that you can make a difference. No matter how old you are, what your idea is, or where you are in the world, you can do something that will impact the CRPS community. All you need to do is want to make a difference and act on it. I left feeling so inspired and so grateful for being part of such a wonderful community.

We would like to thank Melanie and her family for welcoming us to her walk. We are honored to be a part of her journey. Thank you, Dickens family, for all of your hard work and dedication. We can’t wait to see what is to come in the next few years for both Melanie and Crazy Sock Day. You can buy a t-shirt until the end of January. Buy one here!

Crazy Sock Day for CRPS Awareness

January 19, 2016

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 week, as they prepare for the second Crazy Sock Walk and the sixth Crazy Sock Day. To see how you can give to this event, please click the link or see the bottom of the blog page for details.

Sammie: Melanie, tell me about a little bit of your journey with CRPS/RSD. Laurie, what has your experience been as a mother of someone with chronic pain syndromes?

Laurie: It’s been a learning experience over the past six years. We started with having absolutely no knowledge of RSD/CRPS or how we would be in a life changing situation with our 10 year old child. The information available was confusing and conflicting, especially for the pediatric world with this diagnosis. The search for appropriate doctors was long, and is ongoing. We’ve spent hours researching and networking. It’s been an ongoing process that still has a place in my life today. Melanie has been a complex case with many comorbid conditions and additional diagnosis, so we’re always team building and finding just the right treatment to help enhance quality of life and promote as much normalcy as possible.

Melanie: It’s been a rough journey, especially during the beginning. It was super scary, I was used to my parents being able to tell me what was going on and why, then all of the sudden they didn’t have answers. It was really hard in the beginning because I thought I would go to physical therapy for a month and then go into remission, I actually think that I was making things harder on myself thinking like that. It has taken a while but now I don’t expect to get better. If I do get better, I will be thrilled, but I’ve made it six years so I can “live” with it. Coping helped too, but honestly nothing could help the emotional roller coaster of the first 2-3 years, I had to go through the stages of grief; I was grieving my old life.

SB: You’ve been running Crazy Sock Day for 6 years now! What made you start this day of awareness?

L: My husband, Shawn, and I proposed Crazy Sock Day to Melanie as the year anniversary of her life altering injury approached. We wanted to make sure that this day was not one of sadness and loss, but yet, a celebration of Melanie’s strength and determination to live with the challenges of chronic pain. Since Melanie had been wearing long colorful knees socks as part of her physical therapy desensitization routine, it made sense to ask anyone who knew Melanie to wear socks like hers. What started as a small “event” within our family, at her school, and even among many Facebook friends, soon became a “holiday” of sorts that Melanie has always considered very special.

M: As much as I’d like to, I can’t take full credit for Crazy Sock Day. My parents came up with the idea because I was getting upset about the year mark coming up, they suggested all our friends and family wear crazy socks and that was that. After that year I was super involved because I realized that it could actually make a difference.

SB: What do you think about its success?

L: I’m thrilled with the support and attention Crazy Sock Day has gained, and feel it’s been commanding of RSD/CRPS awareness. We since added a goal of awareness of Gastroparesis, Mitochondrial Dysfunction, Ehlers Danlos Syndrome (Joint Hypermobility Syndrome), and Invisible Illness in general, as these issues all affect Melanie and many others with RSD/CRPS.

M: It means a ton to me; so many people know about chronic pain and invisible illness. I have been through a lot, especially with people judging me so the fact that more people are aware of invisible illness makes me happy.

SB: The second Crazy Sock Walk is January 24. What should people expect to see at the walk?

L: Crazy Sock Walk will have a raffle and silent auction with prizes donated by friends and community businesses (along with some of Melanie’s framed photography and artwork), a sock raffle, as well as a bake sale, food & drink items, and a one mile group walk in crazy socks. Melanie also has various awards she gives out to participants.

M: AWESOMENESS! Just kidding, we will have food, games for kids, food, baked goods from the “Amazing Melanie Marie Bakery”, raffles, and art for sale.

SB: How has the support of the community been?

L: We’ve had support from many local small businesses in donations for the raffle and auction. Friends and family are always supporting Melanie but we hope this year to have even more community participants with a very close to home location for the walk.

SB: What is the best part about having this awareness day, and now event, each year?

L: The best part about the awareness day is the smile on Melanie’s face as she sees the impact she has had and the support being given to not only her, but others, who are dealing with chronic pain and illness. The Crazy Sock Walk event has taken Melanie’s Crazy Sock Day to a new level. While Crazy Sock Day has never been about money, the walk does bring in a nice donation to two non-profits we see as vital to the RSD/CRPS, and chronic pain community. (US Pain Foundation and RSDSA)

M: Everything. This disease has been the most difficult thing to happen to me, to see that so many people care about me and Crazy Sock Day is insane. I never expected it to get this big, or really even past friends and family so it’s just astounding.

SB: Have you been able to meet people that have stories similar to yours because of this?

L: We have met many people through Crazy Sock Day, and heard many people praise Melanie’s efforts, or even say they have learned from her journey.

SB: What do you see happening with this in 5 years?

L: Crazy Sock Day will always exist with the power of social media, but, we’re taking each year as it comes as far as any physical events. Crazy Sock Walk 2015 was great fun and successful, and we hope to see Crazy Sock Walk 2016 meet or exceed that. We’ll see what 2017 brings. There are always ideas circulating in our minds.

M: Honestly I have no idea, and as long as my friends and family are still participating, I’m happy.

SB: What is something you want everyone to know about you/the event?

L: Crazy Sock Day is all because of one young person who brought a big buzz and made change in an area where change was needed (awareness). I hope people will learn from this, that every person, no matter your age, can make a difference.

M: I’m not some amazing, strong person, at least no more than anyone else. I just do what I need to in order to live my life. I don’t do this for attention, it actually has very little to do with me other than it being my injury anniversary, I just want people to know about invisible illness, CRPS, Mito, Gastroparesis, and EDS.

L: Melanie has faced many obstacles and challenges in her young life because of chronic pain and illness, but she has shown through her actions that you can adapt to a new normal, you can improvise with participation in activities, and you can keep living despite it all. This is the true spirit of Crazy Sock Day.

It’s not too late for you to support the Crazy Sock Day/Crazy Sock Walk. To donate to the event, please click here. Visit Custom Ink if you are interested in purchasing a Crazy Sock Day shirt. Be sure to wear your craziest socks on Sunday, January 24. You can post pictures to the RSDSA Facebook page and we will share them with Melanie and her family. Proceeds from this event will go to RSDSA and the US Pain Foundation.

Join us to Color The World Orange™ for CRPS/RSD Awareness on Nov. 2

October 19, 2015

By The Color The World Orange™ Team

Color The World Orange™ is almost here and we need your support!

An annual event held the first Monday of November to spread awareness of complex regional pain syndrome (CRPS), also known as reflex sympathetic dystrophy (RSD), on Nov. 2 Color The World Orange™ supporters will be wearing orange and hosting events to spread awareness of CRPS/RSD, as well as raising funds to support research of this debilitating condition.

To have the biggest impact, we need everyone in the CRPS/RSD community to get involved.

The easiest way to participate is to wear orange – a ribbon, a shirt, a bracelet — and post a picture to social media with the hashtag: #CRPSORANGEDAY™.

We had a goal to light the night orange on Nov. 2 and due to the hard work of Color The World Orange™ supporters, buildings across the world are helping to turn that goal into a reality.

In the U.S., the Con Edison Clock Tower in New York, the dome of the Nassau County, New York Theodore Roosevelt Executive and Legislative Building, the Terminal Tower in Cleveland, Ohio, the Houston, Texas City Hall building, the giant soda bottle at “Pops” in Oklahoma City, Oklahoma, the dome of the Westmoreland County, Pennsylvania courthouse, the Gulf Tower in Pittsburgh, Pennsylvania and the South Street Bridge in Saegertown, Pennsylvania will all be lit orange, as will buildings in Chicago, Illinois.

In Australia, the SkyPoint Observation Deck, the Queensland Performing Arts Centre, the Brisbane Treasury Casino & Hotel, the Brisbane Convention & Exhibition Centre and the Melbourne Star Observation Wheel will all be lit orange. In the U.K. the Brighton Wheel is also scheduled to turn orange.

Four Color The World Orange™ supporters will be wearing orange as they run the New York City Marathon and three cyclists in the U.K. will be participating in a 12 hour “cyclathon.”

These are just a few of the amazing events that have been planned for Color The World Orange™ 2015.

In addition, 40 proclamations, with more on the way, have been granted by U.S. Governors and local officials recognizing Color The World Orange™ 2015 and November as CRPS/RSD awareness month.

Color The World Orange™ was started in 2014 to bring global attention to a disorder that, unfortunately, too few people understand. The goal of the event was, and remains, to have one day where everyone affected, regardless of where they live or the location of their CRPS/RSD or what organization they belong to, can join together for one common goal—bringing awareness to CRPS/RSD!

We truly believe that if we stick together, our voices will be heard. There really is strength in numbers.

During the first annual Color The World Orange™ in 2014, buildings in New York, Chicago, Cleveland, Indianapolis, Indiana and Charlotte, North Carolina were lit orange, as were bridges in New York, Oklahoma City and a fountain in Australia. There were even CRPS/RSD billboards in Oklahoma City. One supporter ran the 2014 New York City Marathon, while another completed a 200-mile bike ride through the U.K.

Forty-four proclamations were obtained in 2014 from U.S. states and cities recognizing Color The World Orange™ and November as CRPS/RSD awareness month.

More than 1,000 tweets and more than 800 Instagram posts about Color The World Orange™ were made on Nov. 3, 2014.

Last year more than $7,000 from Color The World Orange™ events and fundraising was donated to the RSDSA to be used for research.

Let’s all work together to make Color The World Orange™ 2015 an even bigger success by wearing orange, and encouraging friends and family to wear orange! Make sure to take a picture and post it to social media with the hashtag: #CRPSORANGEDAY™.

Let’s show the world that while we are in pain, we are strong!

For more information and to find events in your area, please visit the Color The World Orange™ Facebook page or website at colortheworldorange.com.

Current and Future RSDSA Initiatives on Behalf of the RSDSA Community

July 2, 2015

Written 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 tcapp.org and fill out an application today!!! Space is still available. Act now before it is too late!

The recent June conference in Denver was an outstanding success. Our attendance topped 110 individuals and caregivers. One couple drove 14 hours from Arkansas to become more educated about current treatment options. Another traveled from Massachusetts! We are currently editing the presentations for viewing on our YouTube channel. We have uploaded 78 videos with more to come! Plans are underway to host the Integrated Solutions to CRPS in Cherry Hill, New Jersey on September 11, 2015 and in Orange, California on February 27, 2016. If you have any questions, please email Samantha Barrett at [email protected].

Bob Lane, a member of RSDSA’s Board of Directors has pioneered the development of a 1-credit hour CEU for nurses on Complex Regional Pain Syndrome (CRPS): Causes, Diagnosis and Treatment. If you are interested in teaching the course in your area, or want to see where a course may be coming next, please contact Bob Lane at [email protected].

RSDSA is also tackling the thorny issue on how individuals with CRPS are treated by Emergency Department (ED) staff when they go to obtain pain relief for an unbearable pain flare. The answer may be IV Ketamine. ED staff are very familiar with Ketamine, but not as a rescue agent for breakthrough neuropathic pain. We are exhibiting at the American College of Emergency Physicians in October to “broach” this intervention.

In the CRPS research arena, RSDSA via its International Research Consortium (IRC) has recruited over 35 established and productive CRPS clinics around the world to join the IRC. The IRC wants to encourage multi-center clinical trials of novel therapies. Just planting a seed of hope!

The RSDSA Board of Directors in May approved a pilot genetic study of CRPS. This project will address a fundamental question regarding CRPS: Why do some individuals develop CRPS and others do not despite experiencing similar injuries? Specifically, this project will examine whether individuals who develop CRPS differ from those who do not in terms of a wide array of genetic differences (in DNA), differences in how genes are expressed, differences in the proteins that make up the body, and differences in how chemicals are metabolized by the body.

This project will examine a vast amount of highly detailed genetic, protein-related, and metabolism-related information collected as part of a previously completed Department of Defense research study of 116 military veterans experiencing pain following traumatic injuries that required limb amputation. This information has never previously been examined. Study patients have been categorized as having CRPS, non-CRPS residual limb pain, or no limb pain. The study will examine whether development of CRPS rather than non-CRPS limb pain (or no pain) after amputation is linked to genetic differences in broad regions of the DNA sequence never previously explored in terms of CRPS risk.

It will also examine whether CRPS risk is related to differences in how a broad array of genes are expressed, as well as differences in proteins or metabolism. The study will additionally test whether severity of CRPS symptoms is associated with these genetic or other factors. This project will provide highly detailed information on a range of potential risk factors for developing CRPS that have never previously been examined. Results may help provide new directions for future research seeking to understand the mechanisms of CRPS and potentially suggest new possibilities for treatment of CRPS.

It is a very exciting and hopeful time for RSDSA and the CRPS community. Stay tuned! Don’t forget to follow us on all of our social media platforms for live updates:

Twitter: @rsdsa

Facebook: facebook.com/rsdsa

Instagram: @rsdsa_official

YouTube: youtube.com/user/RSDSAofAmerica

CPRS is a Game of Wack-a-Mole

April 24, 2015

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 as a team to support and monitor me to this day.

I made the decision early on to not have any procedures done – no spinal stints, no Ketamine therapy -nope. Just some medication. When I told my doctors I was going to walk again, some looked sad and said “We don’t know a lot about this illness”, or told me not to get my hopes up too high. One doctor told me that my time would be better spent learning how to cope with this change in my life. (Not an HSS doctor!)

It began in one leg, but soon spread to the other leg, both arms, and left ribcage. I could not bend my head forward enough to brush my own teeth. There was one point where I decided to ask to have both legs amputated. (Thank goodness I didn’t!) It took me three months to get my legs to bend so I could get into a wheelchair – probably the second most happy day of my life…to be pushed through the park – out in the green for the first time in months…I still get teary-eyed thinking about that.

Two to three hours of therapy every day on my own, and several years of PT visits twice a week. I moved to a rollator – yelped every time the wheels hit a bump…but I was upright! I didn’t care. Then to a cane! Two flare-ups set me back, but RSD chose the wrong person to mess with. November 2012, I walked outside without a cane. The happiest day in my life! Since then, I have only had to use the cane about three times a year.

Of course, this illness completely changed my life. Divorce, had to leave my job, sell my home. Still putting it all back together.

Currently, I manage my illness. It is a game of wack-a-mole. A flare-up in my hip for about a year before I found out it was RSD and not an injury from a fall off my shower seat – nipped that in the bud. I had a flare-up in my larynx; if I lean my arms on my desk without my pillow my lover arms flare up, blurred vision when stressed; I figured out that my index finger was swelling and in pain because I hit the elevator button and light switch with my finger tip (use the knuckle!) A lot of time trying to figure out why the pain is where it is and get it gone. I manage balance problems, proprioception issues, stairs; inclines…these problems vary from day to day and catch me off guard.

[Funny story: I went to see Nutcracker this past December and got a seat in the Mezzanine. The incline was so steep – with no hand-rail, I entertained the whole Mezzanine audience by sliding down the stairs to my seat on my butt – Terror-stricken the whole way! I found it amusing that here I was doing that when, years ago, I had danced more than my share of Nutcrackers!]

Yes, I can walk right now! I never believed in miracles, but I do now! I am so amazed and grateful (oops, and teary-eyed again) that I will actually WALK in the 2015 Achilles Walk for Hope & Possibility this year to support all my dear, dear friends who are also struggling with this illness every day. All of us can have a miracle.

I would love your support. Please sponsor me – OR BETTER YET: COME JOIN ME! How wonderful would that be if you were there! Join the Debbie’s Warriors group!

Many thanks for your support — and don’t forget to forward this to anyone who you think might want to donate too!

To support Diane, please make a donation to her page.

The Cynthia Penaskovic Memorial Fund

April 17, 2015

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 longer hold the threads. She was blessed with extraordinary grace and courage, providing loving support for her widowed mom, family and friends, when she was the one in dire need.” Sadly, Cynthia lost her 23-year-old battle with CRPS in November 2013.

Joan Penaskovic and Veronica Meyers, Cynthia’s mother wrote to RSDSA to inquire about establishing a Cynthia Penaskovic Memorial Fund. Cynthia envisioned a fund that would “serve as a lightning rod for CRPS/CRPS Research Only so that “no one would ever suffer the way I did.’ The RSDSA Board of Directors unanimously accepted a very generous donation to establish The Cynthia Penaskovic Memorial Fund. It was stipulated that the funds would be donated to promising laboratories and scientists through fellowships and grants targeting research for a cure.

Serendipitously their gift arrived at the right time. RSDSA has recently established an International Research Consortium with the goal of linking laboratories worldwide to foster greater collaboration amongst scientists researching CRPS; thus producing more robust studies leading to better treatments and hopefully a cure.

Joan Penaskovic asked us to encourage the CRPS community to join in this effort. Her simple plea is, “Do not let Cynthia’s suffering be in vain. It was her last wish to help drive funding for Research and with your help we can cure RSDS/CRPS. Donate now.”

Everett Koop, former Surgeon General of the United States cautioned us that the treatments of today cannot be the treatments of tomorrow.” Consider that the National Institutes of Health only invests less than one percent of research dollars into pain research. It is up to us.

To donate to The Cynthia Penaskovic Memorial Fund, visit https://rsds.org/donate/ and give generously in Cynthia’s memory (make sure that you write in memory of Cynthia in the box on PayPal’s second page) or in the memo line of your check. Thank you for your generosity.