Cynthia Penaskovic had time to think about it

Shamelessly lifted from the RSDSA Weekly News You Can Use -- full of overtly more cheerful fun announcements 'n all, but I stole this one for its serendipitous conjunction with the RSDSA  International Research Consortium.  Science, good science, is where it's at.  Cynthia Penaskovic had time to think about it.

The Cynthia Penaskovic Memorial Fund

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."

1. 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 http://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.

© 2015 L. Ryan

Jim Says, "Follow the Consumer Pain Advocacy Task Force!"

Jim Broatch, that is --

James W. Broatch, MSW

Executive Vice President and Director, RSDSA...

Jim Broatch is the name I associate with the wonderful organization, upon which I rely, as a person now nearly 13 years into her CRPS journey: RSDSA.  I wish to goodness they'd change their name to eliminate the deceiving and [mostly] scientifically inaccurate "RSD," but since so many out-of-the-loop health care providers continue to feed newly diagnosed patients the pablum, easy to digest, of "RSD," the organization must want to maintain its availability to everyone...

Even many of the most talented and experienced medicos maintain that it really makes no difference -- call it "RSD" or call it "CRPS" -- because the treatments (such as they are!) and means of diagnosis are the same.

Sorry, but I call "foul" on the play!  

Just as we've seen an explosion of good, solid science on CRPS, Types 1 and 2, and have watched the whole tenor of the discussion around this sucky pain syndrome evolve, so will we watch the distinction widen between emphasizing run-away circuitry within the sympathetic nervous system (the simplistic "RSD" explanation) and the complexities of neuro-inflammatory and immunologic bases being proven in labs and in well-founded studies of CRPS. [ADDENDUM: Here's one of my first attempts to make this point, long, long ago!]

Anyway!

Jim sent me and several thousands of his closest friends a challenging invitation to support the work of the newly formed Consumer Pain Advocacy Task Force.  The "war on [prescription] drugs" is having an unintentional negative impact on people in severe pain due to physical illnesses like CRPS. He invited each of us to share a flyer promoting CPATF... and that, of course, is what this post aims to do.

I just have to work my way through the provenance of everything here writ.  It is something I do, and rather than change my obsessional impulses, I try to provide a small explanation.  Either you'll wade your way through the genealogies of this blog, or you'll learn to scroll down the page to what you think really matters.

(Mes chers lecteurs! "Whose blog is it, anyway?")

Anyway!

When Jim Broatch becomes involved in something, it's often my lazy way to enlightenment, and I tag along to see what's up.  Rarely am I disappointed.  Usually, I am taught a thing or two.

Read on, Macduffs!

Dear Marlinspike Hall Occupants and Belovèd Readers of elle est belle la seine la seine elle est belle :

RSDSA has joined the newly formed Consumer Pain Advocacy Task Force (CPATF) In March 2014, 16 organizations formed the CPATF to unite around one goal - to work collectively to promote, support and monitor the implementation of the National Pain Strategy (NPS).  Learn more about the NPS and how you can be involved by clicking here. RSDSA  will keep you informed along the way and ask for your involvement at critical moments. Stay tuned and be ready to take action.  We expect the NPS Report to be released for an open public comment period soon and will send you an action alert at the right time so you can join thousands of others living with pain to speak out in response. The following beliefs guide our collective work: Chronic pain is a real and complex disease that may exist by itself or be linked with other medical conditions Chronic pain is an unrecognized and under resourced public health crisis with devastating personal and economic impact Effective pain care requires access to a wide range of treatment options Allowing people to suffer with unmanaged pain is immoral and unethical ****In the meantime, please read and share this information sheet with others-your family, friends, healthcare providers and community.**** Sincerely, James W. Broatch, MSW Executive Vice President and Director

So click on the INFORMATION SHEET!  Print copies!  Dance, prance, stroll, or roll through your own belovèd communities and thrust, or gently place, the info into waiting hands!  Okay, it would also be wonderful if you emailed it to some quietly hurting friend or an activist with time on her waiting hands. It would even be sufficiently wonderful if you download the file to your own device and take on the cause as a private thing.  Sniff.

Image source:  Rabble Rouse the World Books Banner

© 2015 L. Ryan

A Chagall for a Very Good Cause: RSDSA's Annual Bounty of Hope Gala and Auction

It's the beginning of the Besiegement Season.  The gimme-gimme hands are out early.  Here is one request, though, that may appeal to some of you Darling Readers.  It comes from Jim Broatch, Executive Vice President and Director of RSDSA, the best, most reliable support and information source for CRPS patients, anywhere.

I know.  Why don't I, on "behalf" of the Haddock Family, donate a couple of Caravaggio, and perhaps even the Holy Foreskin, recently transferred to Marlinspike Hall due to an unfortunate oversight by Novice Master, Father Guido, which led to the equipment failure of the modified domed pastry tray that contained the relic?  Well, if you've ever been on the receiving end of an alliterative harangue by Captain Haddock, or sat through interminable guitar masses at a Cistercian monastery not known for its musicality, you'd not be egging me on, you reprobates.

But hey, you've got schtuff, too!  And "gift certificates, airline miles, timeshare vacations, unique items like sporting event tickets, shows, or services"!  I know you do!  Promote your company, show off your brand!  Shoot, offer to do a striptease!

In all seriousness, mwa ha ha, CRPS sucks.  I find its capacity for suckitude mind-boggling.  Just in the past 6 weeks, it has decided to take me back to CRPS school and show me some of its new sadistic tricks.  If you like me, love me, put up with me for hard-to-discern reasons, and/or care about my occasional straightforward posts about the neurodegenerative disorder, please find a way to make the 30th Bounty of Hope Gala for RSDSA a fan-freaking-tastic fundraiser.

Maybe no one would miss the Chagall detail study for one of his remarkable nine stained glass windows for the Union Church of Pocantico Hills in New York * -- to accompany and fulfill the last work of Matisse, a rose window in his cut-out style.  We found the Chagall miniature, inexplicably and carefully installed, in a bricked up garderobe in a southwestern pseudo-turret.

We'll have to figure out how to "borrow" one of Captain Haddock's miniature submarines and plot a course through the worm hole entrance in our moat/marina... but, pshaw, that'll be the easy part.  Be on the lookout, Jim!

The Good Samaritan paying the innkeeper for the upkeep of the traveler
Marc Chagall, Union Church of Pocantico Hills, NY

*****************************************************************

Dear Lisa, RSDSA hopes that you will take a few moments to read about our upcoming 30th Anniversary Bounty of Hope Gala and decide to participate by donating to our live and silent auctions. On Saturday, October 25th we will be hosting our 14th Annual Bounty of Hope Dinner at Springdale Golf Club in Princeton, New Jersey. We anticipate approximately 200 guests at this function and the fund raised will go toward research, education, and support of our CRPS community. To make this event as exciting and extravagant as we hope, we will need your help!Please consider supporting our event by donating gift certificates, airline miles, timeshare vacations, unique items like sporting event tickets, shows, or services. In exchanges, you will receive some excellent community exposure and advertising. Your company name, address, phone number and donation will be listed in the Auction Brochure that we will provide to our attendees and will be available on our website page prior to the Gala. If you can not donate an item, please consider calling a few places in your surrounding community to see if they would be willing to donate an item to our live and silent auction. Your donation can be mailed to RSDSA at the address listed below. In order for your item to be included in the Auction Brochure we must receive it by Friday, October 10th. Please fill out the attached Donation Form and return it to Christine at choma@rsds.org. You may also mail or drop it off with your donation to RSDSA, 99 Cherry Street, Milford, CT 06460.  If you have any questions please do not hesitate to contact us at 877.662.7737.  Thank you in advance for your all your help and for supporting RSDSA! Sincerely, Jim Broatch, MSW Executive Vice President and Director RSDSA

*  "Like Matisse, Chagall uses colored glass, but it is glass which has been etched with acid to create gradations of color within each piece.  Once the pieces are assembled, Chagall paints on it as if pinging on a canvas.  Using a black glass paint called grisaille, he creates the details in the figures and mitigates the light.  Chagall adjusts and manipulates the grisaille with brushes, brush handles, metal instruments, and even his fingers.  Lastly, he brushes on a yellow silver stain to give the windows their final sparks of color."

Plagiarized from Jim Broatch of RSDSA: Supporting the CRPS Community

I have no shame.  This is straight from my gmail inbox.  May it inspire some CRPSer out there with the enthusiasm to volunteer, to fundraise, and become a glorious inspiration to us layabouts.  Had I a dependable bone in my body, I'd volunteer to write, edit, or proofread for the new electronic newsletter.  Since I don't, I'll pass along Jim's good words.

Seeking Volunteer Writers, Editors, and Proofreaders for RSDSA Community Update In September RSDSA published the inaugural issue of the RSDSA Community Update, our new electronic newsletter. RSDSA has hired Jessica Begley to serve as the Managing Editor. Jessica is interested in building a team of volunteer contributing writers, editors, proofreaders, and individuals familiar with html production to help publish the RSDSA Community Update. Our intention is to publish the newsletter on a bi-monthly basis. Our next issue is scheduled to be published in mid-December. If you are interested in joining our team, please send an email to Jim Broatch at info@rsds.org. November November is Worldwide  RSD/CRPS Awareness Month - Please Donate Now! Month of November RSDSA is partnering with Christa Whightsel from RSD/CRPS Doesn't Own Me for this month-long campaign. You can help others affected by CRPS/RSD through the Patient Assistance Fund in honor of Brad Jenkins! Join us as we provide much needed support to our brothers and sisters who lack financial resources for daily needs such as heating oil, medical equipment, and help with medical costs. We all know medical care is expensive and so many go without because they cannot afford a doctor visit. The Patient Assistance Fund in honor of Brad Jenkins provides hope and access to quality care. We are all in this together! Help others that need your support by donating to the RSDSA Patient Assistance Fund in Honor of Brad Jenkins. Together we can make a difference! Please Click Here to Donate Now! 7th Annual RSD BenefitTo Benefit RSDSA - Join Us today and Help promote Awareness of RSD Saturday, November 23, 2013 Time: - 7 - 11 pm Location - Fashionhaus, 58 W. 40th St., 9th Floor, (between 5th & 6th Ave.), NY Event Chair - Laura Belt Ponomareva: rsdbenefit@gmail.com  Purchase Tickets -  Click Here  Make a Donation - Click Here lia sophia Jewelry Holiday Fundraiser   A portion of all sales will be donated to the Patient Assistance Fund in Honor of Brad Jenkins Now through December 7, 2013 Shop Securely Online - click on "Browse Our Jewelry," Enter "Brad Jenkins" as the hostess. Select your items and submit your order. Orders - Orders must be received no later than Saturday, December 7th (Receive your order by December 19th in a special gift bag) View Catalog - http://www.liasophia.com/andreasjewels Questions - Contact your lia sophia advisor, Andrea Jenkins at 301.266.4836 or by email at  jewelsanjens@aol.com  Details - Click Here to download a detail flyer on how to order   RSD Cut-AThon in honor of Timothy Lucid Tim Lucid is an 8th grade student at NCS who has recently been diagnosed with RSD after surgery for a fractured elbow. 100% of the proceeds goes to RSDSA and RSDHope. December 7, 2013 Date - December 7, 2013 Location - Heidi's Clip Joint - 3685 Main Street, Warrensburg, NY 12885 518.623.2818 Time - 12 - 4 pm Details -  Click Here 2nd Annual Jingle Bell Benefit Run/Walk to Candy Cane Lane Thursday, December 12, 2013 Time: 6:15 pm  Starting Place - Fleet Fee, Vacaville, CA to Candy Cane Lane Course - 2.5 round trip: Runners, Walkers Strollers and Bike welcome. The run is free.  Contact - Jo Hewitt, 707.365.1228 or email bikejo24@aol.com Donation - Click here to donate.    Be sure to visit the RSDSA website for the latest CRPS/RSD information including new treatment options, valuable resources, upcoming events, and Support Groups in your area. Click Here to Visit Now! SUICIDE CRISIS INFORMATION If you or a loved one are in crisis Please call 1.800.SUICIDE (800.784.2433) Hope Line or The National Suicide Prevention Lifeline 800.273-TALK (8255) - (888-628-9454 en Español) For more information on suicide prevention, click here.

Integrated Solutions to CRPS Registration

Integrated Solutions to CRPS  Registration Closes Friday, May 3rd When Friday May 10, 2013 from 9:00 AM to 4:00 PM PDT Add to Calendar    Click here for details and information on how to register. Where DoubleTree by Hilton San Francisco Airport 835 Airport Blvd. Burlingame, CA 94010 Driving Directions ctions Link) As an added bonus, you are also invited to join us for a "Bay Cruise Adventure" along San Francisco's Historic Waterfront on Saturday, May 11 at noon.      Click here for cruise details We are only 2 weeks away from spending a great day with the CRPS community sharing valuable information and exploring new solutions to help manage CRPS. If you have not already registered, please note the last day to register for the conference is Friday, May 3rd. Click here for details and registration information. If you have any questions or need any further information, please feel free to contact me.      We look forward to seeing you in San Francisco. In best of health,               James W. Broatch RSDSA jwbroatch@rsds.org 877-662-7737

Make your reservations!

Integrated Solutions to CRPS 

May 10, 2013

San Francisco, California

Contact
James W. Broatch 
RSDSA 
877-662-7737 
jwbroatch@rsdsa.org 

Integrated Solutions to CRPS is a conference created for people just like you. Individuals with CRPS, friends, family, and caregivers of the CRPS community are invited to attend. The RSDSA, along with the help from generous sponsors, has assembled a friendly forum where you and experts in the CRPS field will spend the day sharing valuable information and exploring new solutions to help manage CRPS.  You will have the opportunity to talk to and network with members of the RSDSA and others who experience what you do, day after day.

The agenda below will give you an idea of the formal part of the program, but we have found over the years that the most important benefit of a conference like this is the ability to talk with each other.  As you can see, we have scheduled a group discussion, break, and a long lunch so that you can network.

Guest Speakers include: 

Pradeep Chopra, MD,  RSDSA Board Member and physician from Providence, Rhode Island, who will give an update on treatment options.

Peter Abaci, MD, and John Massey, MD, from Bay Area Pain and Wellness Center, will discuss an interdisciplinary model for treating CRPS.

Sharon Weiner, RSDSA Board Member and president of Living with RSDS Inc. will give you hints about managing your daily activities.

Kaitlyn Pintor, RSD/CRPS Bay Area Support Group will talk about ways to create community, both face to face and virtually.



Where
DoubleTree by Hilton San Francisco Airport 
835 Airport Blvd.
Burlingame, CA 94010  

The RSDSA has reserved a block of rooms at The DoubleTree Hilton for your convenience. 

The  discounted room rate per night is $139* and will be available until April 18th.  Just let us know  when you register if you would like us to reserve a room for you.

* Rate does not include taxes and fees.

The DoubleTree Hilton offers free Shuttle Service to and from the San Francisco International Airport.

Avail Yourselves

RSDSA has a magnificent section devoted to research and does a good job culling the nonsensical out of the queue.  Well, a pretty good job.  I have a hard-wired red phone that blinks in seizure-causing rapid patterns whenever there is a Question of Woo, but Jim Broatch never calls.

{sulk}

From the Skeptic's Dictionary:

Woo-woo (or just plain woo) refers to ideas considered irrational or based on extremely flimsy evidence or that appeal to mysterious occult forces or powers.

Here's a dictionary definition of woo-woo: 

adj. concerned with emotions, mysticism, or spiritualism; other than rational or scientific; mysterious; new agey. Also n., a person who has mystical or new age beliefs. When used by skeptics, woo-woo is a derogatory and dismissive term used to refer to beliefs one considers nonsense or to a person who holds such beliefs.

Sometimes woo-woo is used by skeptics as a synonym for pseudoscience,
true-believer, or quackery. But mostly the term is used for its emotive content
and is an emotive synonym for such terms as nonsense, irrational, nutter, nut,
or crazy.

Here's a peek at the RSDSA holdings, and maybe it will bolster your interest enough to join, if you haven't already.  My membership is probably dead, but I have an excuse.  As soon as I think of it, you'll be among the first to know.  (You should witness my angst during PBS drives...)

These are the broad categories covered, within which are hidden gems of research... So get busy; Start reading.

We have compiled a list of articles on research and treatment of CRPS. You may use this for your personal use, put please heed the following warning concerning copyright compliance:

The copyright of the US (Title 17, US Code) Govern the making of photocopies or other reproductions of copyrighted material. Under certain conditions specified in the law, libraries and archives are authorized to furnish a photocopy of other reproduction. One of these specified conditions is that the photocopy or reproduction is not to be "used for any purpose other than private study, scholarship, or research." If a user makes a request for, or later uses a photocopy or reproduction for purposes in excess of "fair use," that user may be liable for copyright infringement.

Updated March 22, 2013

Children

Chronic Pain 

Chronic Pain and the Emergency Department

Complications

CRPS Overview

CRPS and Autoantibodies

CRPS and Dystonia/Movement Disorders
CRPS and Pregnancy

CRPS and Other Conditions

CRPS and Surgery

Driving

Epidemiology and Pathology

Glia Activation and Neuropathic Pain

Hyperbaric Oxygen Therapy (HBOT)
Impairment/Disability

Ketamine Treatment

Mirror Therapy and Graded Motor ImageryNeuropathic Pain
RSDSA-Funded Research

Research

Somatoform/Conversion Disorder

Spinal Cord Stimulation and Neuromodulation

Treatment

RSDSA Conference Invitation

Integrated Solutions to CRPS  is coming to San Francisco on May 10 Register  now! When Friday May 10, 2013 from 9:00 AM to 4:00 PM PDT Add to Calendar    Click here for details and information on how to register. Where DoubleTree by Hilton San Francisco Airport 835 Airport Blvd. Burlingame, CA 94010 Dear profderien, This national conference, held for the first time last fall in Phoenix, brought together more than 100 people−those diagnosed with CRPS, their friends, and their family members.  During the day, people told us over and again what an outstanding experience it was. This year promises to be better than ever. Medical experts will discuss research and treatment, and some of our leaders who have CRPS will share tips on getting through the day. Join us at the DoubleTree by Hilton San Francisco Airport at 9 am on Friday, May 10. Parking is free.  Click here for details and registration information. If you have any questions or need any further information, please feel free to contact me.      We look forward to seeing you in San Francisco. In best of health,             James W. Broatch RSDSA jwbroatch@rsds.org 877-662-7737

2013 Achilles Walk for Hope and Possibility

From a mailing by Jim Broatch of RSDSA:    

Welcome to "TEAM RSDSA"

2013  Achilles Walk for Hope and Possibility Registration


Join Team RSDSA for an exhilarating day!  Packed with plenty of love and emotion, we walk for the entire CRPS/RSD Community. We've made it really easy for you to register.  Just click on the [green] REGISTER button below.

Team RSDSA participates in the Achilles Walk for Hope & Possibility to provide support, education, and hope for everyone affected by the pain and disability of CRPS/RSD while we drive research to provide better treatment and a cure.

Approximately 50,000 new cases of CRPS occur each year, yet most individuals are not familiar with it. We are on a mission to create awareness, and to fund critical research toward the advancement of earlier diagnosis, better treatment options and hopefully, a cure for CRPS/RSD.

Your participation and contribution supports RSDSA’s mission. Together we can make a difference one step at a time. Thank you for being a RSDSA Team Member!

 Date

Sunday, June 30, 2013 at 9:00 AM

 Location

Central Park & Virtually Around The Globe
New York, New York

 Contact

Pamela Kientzler
877-662-7737
achilleswalk@rsds.org

Type	Price	Quantity
Walker	$38.00	0                          1                          2                          3                          4                          5                          6     7     8     9                          10
Virtual Walker	$20.00	0                          1                          2                          3                          4                          5                          6     7     8     9                          10

I registered offline and need to create a fundraising page
- or -Someone else registered me and I need to create a page

ACTION ALERT from RSDSA

The RSDSA would like to make you aware of a petition currently before the Food and Drug Administration (FDA) that requests labeling changes for opioid analgesics (narcotic pain medications). Since many individuals with CRPS rely on opioids as part of their medication regimen, we wanted to bring this petition to your attention. The petition, submitted by Physicians for Responsible Opioid Prescribing (PROP), requests three specific changes to opioid analgesic labels: 1- That they no longer be prescribed for "moderate" noncancer pain, but only for "severe" noncancer pain 2- That the maximum allowable dosage per day be equivalent to 100 mg of morphine for noncancer pain 3- That this medication can only be used for a maximum duration of 90 DAYS. What this petition appears to mandate is a "one size fits all" prescribing mentality which DOES NOT benefit the chronic pain patients in general and CRPS patients in particular. The RSDSA has chosen to oppose the PROP petition on behalf of you, our members. On Wednesday, October 10th, The RSDSA sent this opposition letter to the FDA. Cick Here to read RSDSA letter. [Read it in in the post following this one -- It's too impressive not to reproduce here!] For those of you who would like to send your own individual response regarding PROP to the FDA, we encourage you to stress the specific details that your medication enables you to do that without it you would be unable to do. We suggest you use the following language to keep the message clear: My name is  _______. As a person  who suffers with the chronic and  yet incurable pain of  CRPS,  I ask the FDA to deny the PROP petition. I use opioids as prescribed by my physician allowing me to function better and partake in life in ways I would be unable to do without this prescribed care.  To send your comments to the FDA click here. The category to use for your response is Individual Consumer.

Your immediate action to this issue will make a difference. To read the PROP petition, click here. Please forward this email along to your friends and loved ones. Should you have any questions or would like to receive further information, please email or give me a call.  Sincerely, Jim Broatch Executive Vice President and Director RSDSA 877-662-7737 203-877-3790