By the Power of Pain Foundation “This video goes through pictures of RSD/CRPS patients who have visual symptoms of their extremities (hands, arms, legs and feet). RSD is a Neuro-Autoimmune condition which affects many aspects of the body. For more information visit Power of Pain Foundation. Special thanks to Twinkle and Kurtis VanFleet, and singer Page Jackson.”
Please share!
Sponsor/ Donation Request
In-Kind and Cash donations are Tax deductible
For Immediate Release: June 26, 2012
RE: Exhibitor at the Sacramento’s Convoy of Hope event
The Power of Pain Foundation (POPF) is hoping to become an exhibitor at the Sacramento’s Convoy of Hope event. The event will take place on September 15, 2012 at the Cal Expo. The Power of Pain Foundation is a nonprofit 501(C)(3) charity. All donations are tax-deductible. We really need your help! We must raise $2,000. We will be able to reach 20,000+ people who attend the event and distribute awareness information, provide resources to the community, host a balloon launch, and answer questions. We need donations now to raise funds to participate in this great event during September 2012 – National Pain Awareness month.
Our goal at the Convoy of Hope event is to inform the public that Reflex Sympathetic Dystrophy and other neuropathy conditions do exist, there is hope and help.
Please help us attend this event and reach Californians with this important information and resources. Donors of $25 or more will have their names listed on the Power of Pain Foundations Website with over 1,000,000 page views a year and our social media pages (Facebook, Twitter, Linked In), and our newsletter and email blasts, reaching over 8,000 direct people.
Thank you for your consideration.
Twinkle VanFleet
POPF California Ambassador
Media Contact Information:
Twinkle VanFleet
CAAmbassador@powerofpain.org
twinkle@crpsadvisory.com
916-850-0RSD (0773)
More on the Power of Pain Foundation
The Power of Pain Foundation (POPF) provides community based support services that address the needs of chronic pain patients with Neuropathy conditions such as RSD/CRPS, Post Cancer Pain, Lyme, MS, Fibromyalgia, Diabetic Neuropathy, and many more. Accordingly, beneficiaries include patients who are economically and socially affected by these invisible diseases. Whether you have Neuropathy pain or are a caregiver, family member, or friend of someone diagnosed, we help you face the challenges and life changes of chronic nerve pain, head on. The Power of Pain Foundation’s federal ID number is 65-1298571.
The POPF works throughout the United States to promote awareness for Neuropathy conditions. One such condition is Reflex Sympathetic Dystrophy, also known as RSD/CRPS, and Causalgia. More than 10 million people have been diagnosed with RSD in the United States alone. RSD has a score of 42 out of 50 on the McGill Pain Index, the highest of all medical conditions known to man. There is no cure to date.
More on the Sacramento Convoy of Hope event
“The Sacramento Convoy of Hope is a collaborative effort between dozens of local churches, businesses, social service organizations, local government and Convoy of Hope. This all-volunteer event mobilizes hundreds of area residents to serve and make a difference in their community. Strong participation by local businesses, churches, community agencies, and individuals is crucial to the success of this event. Bring your family and enjoy free services and entertainment, with more than 100,000 pounds of free groceries. There will be a health fair, job fair, free medical and dental screenings with local doctors, medical professionals and dentists, kid’s zone, free haircuts, dozens of free carnival games, inflatable’s and live entertainment. Also, free family portraits courtesy of local photographers, community services, dozens of local community service organizations and free BBQ lunch.”
213 Nottingham Drive, Colonial Heights, VA 23834, 804-657-PAIN(7246)
38556 N. Dave Street, Queen Creek, AZ 85240, 480-882-1342
A 501 (c) (3) not for profit organization – 65-1298571
www.powerofpain.org
Checks and Money orders from around the world can be sent to the address above. Please add Convoy of Hope to the memo. Or go to our website at: http://powerofpain.org/donate/ and choose your option.
Paypal account ID- donate@powerofpain.org
All donations go right back into serving you and the Convoy of Hope itself.
I can accept cash in person in Sacramento only. A receipt with both our signatures and information will be required to maintain proper records for the Power of Pain Foundation.
In addition, the Power of Pain Foundation is Hosting an Online Auction Fundraiser to help us become an exhibitor and the Convoy of Hope. We must raise funds to complete the mission of raising awareness and support for the conditions listed above.
We’re also seeking donations Sacramento area businesses who would be kind enough to offer us gift certificates, vacations, airline tickets, accessories, jewelry, hair salon certificates, spa’s, handmade items, etc for our auction.
We’re also seeking area residents who might have items to donate.
Again all items are tax-deductible.
Sponsors include: (updated daily)
Business Donors
Absolute Investigations
Individual Donors
Dani Meyers
VanFleet Family
Taylor Family
Convoy of Hope Fundraiser 2012
Facebook events Convoy of Hope Online Auction Fundraiser 2012
We would be grateful if you joined our event page and attended the auction.
Feel welcome to add me on Facebook- www.facebook.com/rsdcrpsfire
We look forward to serving you!
Thank you!
~Twinkle V.
As the Event Coordinator and California Ambassador for the Power of Pain Foundation (POPF) I would like to invite you to Help raise awareness in a balloon release fundraiser project this summer in Sacramento California for Reflex Sympathetic Dystrophy Syndrome (RSD) aka Complex Regional Pain Syndrome (CRPS) and Chronic Pain issues. Each balloon/balloon bunch will have a 4 sided tag attached. The tag will include your name/business name and short message, POPF Info, and RSD Info.
Saturday, July 21, 2012 – 11:00 a.m. until 3:00 p.m.
Location- To be announced
Pricing is:
$2-1 balloon
$5-3 balloons
$8-5 balloons
$16-10 balloons
Pre-order Balloons at http://powerofpain.org/fundraising, be sure to include your name and short message in the comment section when completing your order. Names will also be posted on our website!
You do not have to be present in Sacramento California to participate. We will release your balloon or balloon bundles for you.
All purchases are tax deductible. The Power of Pain Foundation is a non profit 501(C)(3) Charity.
Not only will this help our cause, but will also give you advertising opportunities whether as a business, organization, foundation or individual. Your name, business name etc will be included on the tag released into the air.
Whoever finds it will not only learn about our us but you also.
For more information and to watch for updates including upcoming location Please visit and check back regularly at Public Event by Twinkle VanFleet and Barby Ingle at https://www.facebook.com/events/314514498596759/
Please help us and join our cause! We’re helping to raise continued awareness for Reflex Sympathetic Dystrophy, Complex Regional Pain Syndrome/Causalgia, Post Cancer Pain, and Diabetic Neuropathy.
We’re supporting the Power of Pain Foundation (POPF) in their ongoing efforts to assist patients and caregivers dealing with these and other life altering Neuropathies. Beneficiaries include patients who are economically and socially affected by these invisible diseases.
Reflex Sympathetic Dystrophy, Complex Regional Pain Syndrome/Causalgia that effects over 10,000,000 people in the United States alone. It is also an auto-immune disorder.
RSD/CRPS is a painful, progressive and often debilitating, neurological disorder that affects the network of nerves along the spinal cord. The Sympatheic Nervous System is commonly known as “Fight or Flight”. The left side of our brain contains the Para Sympathetic, the calm side and the right contains the Sympathetic. Imagine a frightful event, a tiger enters the room. The fight or flight response is our basic human instinct of survival. Fight the animal off, and face the serious consequences (fight) or get the heck out of there (flight aka fly away).
Image that a car alarm has been activated. You’re not sure why it was barely touched. It continues on with the loud noise. You finally realize that nothing you do is stopping it. Sensitivity may have triggered it but in any event it never shuts off. In this analogy there is no solution to shutting the alarm down. None!
Of course the option would have been to either cut the wires to cease the noise or to somehow dismantle or uninstall the system causing it. The alarm is the non stop seemingly never ending pain that a RSD/CRPS patient feels constantly.
There is no cure to date! Hope to see you there!
If you have RSD/CRPS and are interested in possibly working this event with me or can help in anyway please email me at twinklevanfleet@crpsadvisory.com
Support Groups are necessary for those who need understanding and comfort when dealing with chronic illnesses other’s don’t understand. We offer one you can feel at home in.
RSD(S)-CRPS Advisory Info & Support Group
Years ago I had an RSD Support Group at MySpace. At the time it was one of the largest support group for RSD/CRPS there. As MySpace went through its changes and removing some features, I went to work as a volunteer Support Leader for MD Junction at the Reflex Sympathetic Dystrophy Support Forum. I’ve been a Leader there since 2009 and second to the top in seniority.
Since I lost my group at MySpace, I waited to create another of my own until I felt confident with the venue I would decide to hold it at. Since millions of people are on Facebook for various reasons I chose to create it there since there are several options available and a very large and spread out community of pain patients.
Less than a year ago I created the RSD(S)-CRPS Advisory Info & Support Group. I was slow on the start up since within a week of creating it, I ended up in a severe and long lasting flare up. The Group is doing well and growing at a steady pace.
This time I am not running solo. In the past I’ve been an advocate and spokesperson for RSD/CRPS, promoting, advertising, endless hours of research, writing essays and articles, sharing accurate information, staying updated, maintaining my website etc the best that I could. All by myself. It’s really hard. At least for me these last couple of years. I’m in my 11th year of CRPS. My energy is minimal.
Now I have someone to work with me. And currently we’re both working on fundraising and awareness projects for the Power of Pain Foundation as a team and in conjunction with our group. My Co Administrator Wanda will be raising awareness via 2 Expo’s and I’ll be doing so by holding a balloon release project.
We’re also supporting the POPF via Causes. Our page is called “Help the Power of Pain Foundation Assist Those with RSD/CRPS & Other Neuropathic Pain Conditions”
Our group is devoted to the support and guidance of RSD/CRPS patients, family and friends of.
Our mission is to teach and be taught…
…It’s our hope to educate and learn.
We’re a family oriented group. Caring and compassionate. Stop by and take a peek. We would love to have you join us and become part of our online family.
We have a Wonderful Co Administrator (Wanda) and Great Group Leader’s. Our discussions include pain management, the pain we endure on a daily basis, medications, alternative methods of pain control, the use of vitamins and supplements, depression, biofeedback, cognitive beliefs, coping strategies, flare up protocols, clinical trials, various therapies and techniques, meditation, yoga, the use of distraction and modalities, physical therapy, each other and so much more.
We also allow you to share other RSD/CRPS related information sites, books, videos, including your own website, blog, foundation, organization, or media pages. This is for the purpose of spreading further awareness and information around the web and hopefully off also.
All we ask is that you don’t spam us.
We would also be thankful if you shared us with others as well.
Click on our banner above to go to our website
Hope to meet you in our Support Group!
Wishing you pain eased days and nights,
~Twinkle
The Power of Pain Foundation is a 501(C)(3) Non Profit Charity dedicated to the heath and welfare of patients and caregivers struggling with Reflex Sympathetic Dystrophy RSD, Complex Regional Pain Syndrome CRPS and other Neuropathic Illnesses such as Diabetic Neuropathy and Post Cancer Pain.
There are 10 million people diagnosed with RSD/CRPS in the U.S. alone. This is a chronic, painful, debilitating and often progressive autoimmune and neurological disorder that affects the Sympathetic Nervous System and the network of nerves along the spinal cord that send messages to the brain.
<iframe width=”560″ height=”315″ src=”http://www.youtube.com/embed/y8-ngc–Bpw” frameborder=”0″ allowfullscreen>
These are the faces of survivor’s
This video was produced by Twinkle and Kurtis VanFleet of RSD(S)-CRPS Advisory
Great news!
The Power of Pain Foundation (POPF) and Barby Ingle are now sponsoring the Living with HOPE Radio Show with your Host Trudy Thomas.
Trudy’s goal is to promote awareness for the millions of people who struggle with chronic pain daily. To let people know they are not alone in their struggle and that there is life after diagnosis. Trudy discusses various therapies and the emotional turmoil of having a chronic incurable condition such as
RSD/CRPS and coming out on the other side.
People often times wonder where the money goes that they donate to an organization or foundation.
The Power of Pain Foundation is a 501(C)(3) non profit charity. All donations are tax deductible.
We’re passionately promoting the Power of Pain Foundation so they can continue to serve patients and caregivers dealing with Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome, Post Cancer Pain, Diabetic Neuropathy and other painful neuropathic conditions. Our fundraising page exists in an effort to help serve their the cause.
Beneficiaries include patients who are economically and socially affected by these invisible diseases. The POPF will help you face the challenges and life changes of chronic nerve pain, head on.
Donations are also used to serve the public in order to promote RSD/CRPS, Neuropathic and Chronic Pain awareness via Radio and other media. The sponsorship of the Living with HOPE radio show will serve that purpose.
~Twinkle V.
Biology of addiction, current research on addictions and modalities of recovery
Improving global pain relief by achieving balanced access to opioids worldwide
Just a wretch saved by grace trying to do whatever I can to grow up.
Raising awareness for mental health disorders through a shared passion of video games, poetry and more.
motherhood - growth - living
Create a path of Light with your Life
Life Scripts of an INFJ
Finding Your Words
A safe place to talk openly about mental health & illness
Daydreaming and then, maybe, writing a poem about it. And that's my life.
Eu consegui. Você também pode!
Spreading The Truth About Kratom Mitragyna Speciosa
How our healthcare system is killing and harming us
A little something for you.
Nothing is impossible (at least that does not violate the laws of physics). When you can..violate the laws of physics!
Kavita Ramlal, Proudly South African
RSD Advisory- Where Chronic Pain & Depression Collide 