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As many of you know, I may “look normal” on the outside despite using the cane to walk, but on the inside, my body has been battling a war called RSD along with the countless number of sufferers around the world for the past 15 years.
RSD (Reflex Sympathetic Dystrophy Syndrome) also known by it’s more modern name of CRPS I & II, and older terms, Sudek’s Atrophy or causalgia to name just a few, is a chronic pain syndrome that can afflict men, women and children at any age. There is an estimate 1.5 million Americans affected by this chronic neurological pain disorder.
The cause of RSD is not yet known but experts believe that it is a malfunction or misfiring of the body’s sympathetic nervous system which controls all of our involuntary reactions such as heart rate, blood pressure, and “flight or fight” responses. While RSD typically develops after a trauma to the body such as a sprain or injury to the body, it can also occur from blood clots, improperly placed IVs as well as other conditions. In those cases where an injury was the root of the RSD (as it was in my case), the initial injury may in fact heel, however, the abnormal level of pain persists and most often increases.
Although there are several key symptoms that are shared by all RSD sufferers, each case is different and no one treatment modality works for each person. RSD must be treated on an individual or case by case basis. Medical experts are still unable to figure out just why the body has these “over reactions” to trauma, therefore, it remains a disease that cannot be prevented or cured at this time. Enough is still not known about RSD, which is why it is so important to raise funds to educate and create awareness.
Early diagnosis and treatment interventions are crucial in the prevention of worsening symptoms, possibility of RSD spreading to other regions of the body and the risk of the body becoming unresponsive to further treatment.
Along with the endless physical issues that RSD presents, the majority of us also suffer from numerous psychiatric issues and we may become dependent on the potent pain medications that are taken on a daily basis to ease our pain. Some of us require wheelchairs and scooters to assist us in getting around while others are completely incapacitated and unable to get out of bed.
RSD sufferers frequently feel helpless and alone because their illness appears to be “invisible” to the rest of the world including their families and friends (The very people they need the support from the most!). They are accused by others including those in the medical field as “exaggerating” or “faking it” or they say other hurtful things such as “You just want attention” or “It’s all in your head”. These words to a person, who suffers from chronic pain on a daily basis and have lost out on huge portions of their lives, can be detrimental and cause more harm than you know. There are the unfortunate few who cannot wait for a cure and try desperate acts to ease their pain or even attempt or succeed at committing suicide because they are so lost and cannot stand the suffering for one day more. It is our support that can help make the difference by listening to their pleas and helping to raise awareness whenever we possibly can to all who will listen!
I have recently forged an unbreakable bond with my dear friend and fellow RSDer, Kristen Shores, and we both hope to build more friendships and a wider circle of RSD friends in the future. This year, I am joining Kristen and fellow RSDers and Team RSDSA at the 7th Annual NYC Achilles Hope & Possibility 5M Walk/Run/Roll on Sunday, June 28,2009 at 8:00 A.M. in New York City’s Central Park. We have formed Team KRASH II and will be we will be walking with Team RSDSA to raise awareness and contributions to fight this debilitating disease.
This is my first ever walk of this type and I am just hoping to make it to the finish line on the same day! I know that I will be recovering for an undetermined amount of time afterwards, but being surrounded by the support of fellow RSDers and knowing that my efforts are for a worthy cause, makes me more determined to participate. I know it will be an emotional day as just preparing for it has had a significant impact on me because I feel as though I will be taking my life back when I complete the walk. It’s time for my inner butterfly to take flight and fight RSD!
We are all facing financial hardship due to the state of the economy but this disease is
not going away and we desperately need your help!
Any contribution is a generous one. Every penny counts and is used toward promoting awareness, funding much needed research and other means of support for the RSD community and their families.
For more information pertaining to RSD, please visit the national website at
We welcome anyone who is interested in participating in the walk to come join us.
Those of you who are interested, your $30 donation includes: your entrance fee to walk, a Team RSDSA t-shirt, and a medal upon completion. The following link will provide access to detailed information for those of you who are interested in participating in the walk.
For those of you who prefer online services, you can visit my RSD walk fundraising site at www.firstgiving.com/kellybrown4 . This is a secure site and you can make a direct donation here to RSDSA in my honor. Once your donation is made, you will receive an email titled :You're donation has been processed successfully. Be sure to hold onto this record as it is your receipt for tax deduction purposes.
If you wish to make a contribution to me directly, please contact me ASAP so that I can provide you with the proper forms. Please make your checks payable
to: RSDSA and mail it to my home address. If you opt for this method, please be sure that I will receive your donation no later that June 25th as I will be traveling to NYC for the walk.
In addition to raising funds for the walk, Kristen has also contributed her time and talent and has designed some fabulous RSD bracelets and key chains.
Please visit our Facebook group, RSD’s Battle with Double Trouble if you are interested in making a purchase. (all proceeds will be donated to RSDSA)
I truly appreciate all of your continued help and encouragement. I hope that by physically participating in this walk and trying to raise funds for research, that my efforts will help us get one step closer to finding a cure. On behalf of Team KRASH II, we thank you for all of your generosity and support in our fight to raise RSD awareness.
For those of you who also suffer from RSD I have this to say… Remain positive and hopeful that one day we Will all be pain-free. Feel good, live your life and don’t worry what other people think, your pain IS REAL! I feel it and so do millions of other people across the world! You may feel like no one understands and that you are alone in this fight, but you are never alone and we are here to support you in this fight.
Remember the way awareness works is to spread the word, so let’s start gabbing!
We are not contagious! When we talk of spreading, we refer to the spread of RSD to other parts and systems of our bodies. Let’s make awareness contagious!!
Awareness is the disease we want to spread, not RSD!!
Thank you all!
Kelly A. Brown