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December 2010
A Nephrologist and Patient: A Conversation With Julian L. Seifter
By Claudia Dreifus
The New York Times
November 2010
Xanodyne agrees to withdraw propoxyphene from the U.S. market
Xanodyne Pharmaceuticals Inc. which makes Darvon and Darvocet, the brand version of the prescription pain medication propoxyphene, has agreed to withdraw the medication from the U.S. market at the request of the U.S. Food and Drug Administration. The FDA has also informed the generic manufacturers of propoxyphene-containing products of Xanodyne’s decision and requested that they voluntarily remove their products as well.
Thank You To Our 2010 Bounty of Hope Sponsors!
Kaiser Resources For Medicare Open Enrollment Period
INvisible Project 2010
By Nicole Hemmingway
October 2010
FDA: Fentanyl Transdermal System: Recall - Potential for Active Ingredient to Release Faster Than Specified
The Problem of Pain:
An interview with author Melanie Thernstrom
By William Van Ornum, American Magazine
Veteran to fight for benefits in DC on behalf of RSD sufferers
In the Face of Pain® Launches New Resource Guide for
People with Pain and Advocates (PDF)
Macy's Shop for a Cause
By Sue Pinkham
Love really is a drug—and it can work a treat with pain relief
By Steve Connor, Science Editor
The Independent
Health Sense: Flawed pain science blurs question of he felt, she felt
By Judy Foreman, Special to the Los Angeles Times
September 2010
RSD/CRPS Awareness Quilt
New career direction for Stamford chef:
Former Chef Paul Gileno Leaves Stamford Food Business to Create The Connecticut Pain Foundation
Combined Federal Program (CFC)
The RSDSA participates in the Combined Federal Campaign (CFC), a program that allows pledges made by Federal civilian, postal, and military donors during the campaign season (September 1st to December 15th) to support eligible not-for-profit organizations that provide health and human service benefits throughout the world.
If you are a federal government or military employee and would like to support the work of the RSDSA, please take part in the CFC by entering RSDSA and/or code #11045 on your pledge card.
July 2010
Kakkis EveryLife Foundation Launches RareArtist.org
NORD: Dorman Testifies Before Senate HELP Committee
CRPS: Where We Are Today?
Official Satellite Symposium of the 13th World Congress on Pain of the International Association for the Study of Pain (IASP)
Final Progress Report: RSDSA and RSDhope Grant
(Related: RSDSA
and American RSDHope Award Research Grant to the Children's
Hospital of Los Angeles)
June 2010
Write your U.S. Representative today asking that he/she cosponsor the Improving Access to Clinical Trials (I-ACT) Act (H.R. 2866)
May 2010
Taking Charge of Pain
From the CT Pain Foundation
Medtronic Announces Clinical Trial For Breakthrough Technology In Neurostimulation Therapy For Intractable Chronic Pain
Rehabilitation Institute of Chicago’s Pain Center Takes Proactive Approach
By Tom McDonough
Pain Medicine News
April 2010
Smoothing the Way
By Tanya Mohn
The New York Times
People with disabilities never have an easy time traveling, but a rash of recent improvements, including more wheelchair-accessible taxis and rental vehicles - and even Web sites for people with dexterity or vision problems - have made it easier.
CNN Heroes: Teen turns escape from pain into charity
By Allie Brown, CNN
March 2010
Social Networks a Lifeline for the Chronically Ill
By Claire Cain Miller
The New York Times
Untangling the Web - Patients, Doctors, and the Internet
By Pamela Hartzband, MD, and Jerome Groopman, MD
From The New England Journal of Medicine
How the Health Care Overhaul Could Affect You
From The New York Times
Long-term use of popular osteoporosis drug may harm bone
Temporary Extension Act Affects Medicare Therapy Cap Exceptions Process, Medicare Physicians' Payments And Other Programs
PAN Works to Extend Exceptions to Medicare Therapy Caps
To Our Health: One advocate's battle against insurance companies and a culture of denial (PDF)
By Lary Bloom
Connecticut Magazine February 2010
Washington State Advocacy Alert
Team RSDSA at the Achilles Walk for Hope & Possibility
USAF Reservist Battles Injury and Government Insurance System
January 2010
Legislative Alert: Ask your Congressperson or Senator to support the removal of therapy caps on rehabilitative services for Medicare beneficiaries
Medtronic Seeking Long-Distance Runners Benefiting from Medical Technology
Bethlehem Area News: Freedom High School student fighting, winning battle with debilitating illness
McNeil Consumer Healthcare Voluntarily Recalls Certain Over-The-Counter (OTC) Products Manufactured in the U.S. and Other Countries
Giving Back
People from all over the country
and the world responded to RSDSA’s
recent e-mail regarding volunteering
with CRPS, and confirmed what I had
suspected: people with CRPS might
experience physical limitations, but are
unlimited in their energy and desire to
be part of the world. These responses
were as varied and unique as the paths
of CRPS. Underlying each response
was the common need to interact, to be
of assistance, and to put something or
someone ahead of their CRPS—even if
only for a few moments.
From the plethora of unique ideas, the
possibilities seem endless! These
testimonials are an excerpt from our
upcoming brochure on giving back.
Our Basic Human Pleasures: Food, Sex and Giving
By Nicholas D. Kristof, The New York Times
NORD: Share Your Story for Rare Disease Day!
December 2009
Gifts For You – Make A Donation To Any Pain Organization
NORD Runs Full-Page Ad Calling For an End to Lifetime Caps
November 2009
More pain means real gain in complex regional pain syndrome treatment
New research published this week in Clinical Rehabilitation
NIH ANNOUNCES FIRST NATIONAL RESEARCH STUDY RECRUITMENT REGISTRY
Nationwide Registry to "Match" Volunteers with Researchers
Thoughts About Balance When You Have Chronic Pain
From HowToCopeWithPain.org
APF Staff Member and POPAN Leader to be Featured
on Monday's National Public Radio
RSDS Fall Festival Fundraiser
AVON Fundraiser for RSDSA
National Panel Sounds Alarm About Lack of Physician Training to Treat Chronic Pain; Major Health Groups Endorse New Report Which Calls for Urgent Medical School and Health System Reform
October 2009
Illinois: RSDS legislation signed into law
RSDSA Launches Major Study on the Natural History and Long-Term Health Effects of CRPS
NorthFulton.com: Alpharetta student awarded 'Very Best in Youth'
From NORD: Please Help Us Educate Members of Congress About Lifetime Insurance Caps!
Deadline Extended: 2010 Rachel Tobias Young Pain Research Investigator Award
September 2009
Kakkis EveryLife Art Contest: Empowering Artists Affected by Rare Diseases
2nd Annual Philly Bike Ride for Pain Relief
Follow RSDSA on Twitter
Bounty of Hope 2009
August 2009
2010 Rachel Tobias Young Pain Research Investigator Award
FDA Issues Final Rules to Help Patients Gain Access to Investigational Drugs
Please join us in telling Consumer Reports to test disability supplies and equipment
Two girls lean on each other for support against a rare disease
This Man CHOSE to be in a Coma
After years of excruciating pain that drove him to thoughts of suicide, John Roach decided to gamble on a controversial new treatment-a ketamine-induced coma.
July 2009
Information on Ketamine Treatment
June 2009
Out of the fire, a phoenix emerges
The Word on Pain: PainPathways, a magazine created by WFU prof, gives hope to people who are living with pain
Project Manager for CRPS Registry
Legislative Action Alert from NORD: Support Expanded Access to Clinical Trials
The Development of a Risk Evaluation Mitigation Strategy for Extended-Release Opioids
May 2009
Sparta woman’s disease causes chronic pain
The Cost Conundrum:
What a Texas town can teach us about health care
Senate approves Dahl’s RSDS awareness legislation
Neurology Now: More than a Feeling—New approaches to complex regional pain syndrome are helping redefine "mystery pain"
Pfizer starts to offer free drugs after lost jobs
The New Yorker: Ramachandran's Mirror Trick
American Pain Foundation—Advocacy Action Alert: Media
Wall Street Journal: FDA Approves New Warnings For Epilepsy Drugs
April 2009
FDA: Botox and Botox Cosmetic (Botulinum toxin Type A) and Myobloc (Botulinum toxin Type B): Boxed Warning Required
Tecumseh Herald: Local teen overcomes debilitating disorder to finish high school at top of her class
Study Finds That Rents for Modest Studio and 1-Bedroom Housing Units Are Higher Than Monthly Income or People With Disabilities
Coalition for Iraq and Afghanistan Veterans (CIAV): Second Annual Conference
Washington Post: Drugmakers Ease Eligibility for Discounts
American Pain Foundation Special Action Request: National Pain Care Policy Act of 2009
FDA: March 2009 Safety Labeling Changes - 38 drugs with changes to Boxed Warning, Warnings, Contraindications, Precautions, Adverse Reactions
'Take Care Recovery Plan' to Provide Take Care Clinic Patients and their Families Peace of Mind for Basic Health Care Services
A World of Hurt: In Workplace Injury System, Ill Will on All Sides
A World of Hurt: Exams of Injured Workers Fuel Mutual Mistrust
A World of Hurt: For Injured Workers, a Costly Legal Swamp
March 2009
Retired physician with a disability fights for the right to get around on a Segway
Ohio Members: Send an E-mail Asking Your Senator to Support SB 54, the CRPS Education Act
FDA: January safety labeling changes issued for 28 drugs and therapeutic biologics
NORD Alert: NIH Announces New "Challenge Grants" Funding Opportunity
Dahl pushing for RSD education
NORD Advocacy Alert
Health Insurance Coverage Protection Act Reintroduced
February 2009
RSDSA Joins Millions Around World To Observe Rare Disease Day
Clinical Trial: Feasibility Study of a Novel Device for Chronic Wounds
Success story: Chester resident makes the best of chronic pain
Yes, Pain Is In Your Brain
Woman Overcomes Tough Odds with the Help of Her Furry Friend
Drug-Free Remedies for Chronic Pain
Patient Advocation Foundation's Co-Pay Relief Program: Pain Fund
ETHEX Corporation Issues Voluntary Nationwide Recall
Previously Issued Recall to Wholesale Level On Certain Products Expanded to Retail Level
FDA panel recommends ban on the painkiller Darvon
January 2009
Pain Care Act goes to the House one more time
CVS/pharmacy Announces National Contest for Stories of Extraordinary Caregiving
I feel your pain, even though I can't feel mine
Pain-insensitive people probably rely on emotional regions of the brain for empathy
Trapped in a Medical Nightmare
NJ woman travels to Germany for banned medical treatment, ends up fighting for her life
Opioid Abuse Less Than Imagined Among Pain Clients
FDA Public Health Advisory: Potential Hazards of Skin Products Containing Numbing Ingredients for Relieving Pain from Mammography and Other Medical Tests and Conditions
‘Whose Wedding Is It Anyway?’
Enfield couple’s nuptials to be broadcast
on Style Network show
2008
Nurse to graduate in spite of cerebral palsy
Putting pain into perspective - breakthroughs, tips and trends
Everything you need to know about the latest research, the newest discoveries and the strangest science
2009 Tobias Young Investigator Award Recipient Announced
The Pain May Be Real, but the Scan Is Deceiving
BBC News: Disabled sailor to attempt record
In a Host of Ailments, Seeing a Brain Out of Rhythm
Brain is rewired in patients with chronic pain syndrome
Therapist uses brain to help ease people's pain
One final shot for Illini's Turner
FDA Alert: Propafenone HCl, Isosorbide Mononitrate Extended Release, Morphine Sulfate Immediate and Extended Release, Dextroamphetamine Sulfate
RSDSA named November Website of the Month by the American Pain Foundation
Your Unwanted Vehicle Can Help RSDSA
In Constant Pain, but in the Game
River Hill Senior Endures Rare Disorder to Stay on Court
Lifting the Shadow of Pain
A painful mystery, 'miracle' recovery
Half of Doctors Routinely Prescribe Placebos
FDA Alert: Medtronic Neuromodulation INDURA One-Piece (IP) Intrathecal Catheters, Sutureless Pump Connector Revision Kit, and Intrathecal Catheter Pump Segment Revision Kit
New Study Proves that Pain is Not a Symptom of Arthritis, Pain Causes Arthritis
In search of ... Mentors
Local woman demonstrates how to give back
Dawn Marie's WrestlersRescue helps grapplers, sister-in-law
Pain relief to believe in
Religious faith may prompt the brain to put a hurt on pain
Gene Therapy for Chronic Pain Enters First Human Trial
Danielle clinches gold in Beijing
Andrea Emmes
Nerves Tangle, and Back Pain Becomes a Toothache
FDA: Manufacturers of TNF-Blocker Drugs Must Highlight Risk of Fungal Infections
Legislative Alert from NORD
Lifetime Insurance Caps Bills Introduced in the U.S. Congress
Methadone Rises as a Painkiller with Big Risks
Wisdom for Coping with Pain: An Interview with "Jeisea"
From HowToCopeWithPain.org
Opioid Painkillers Sometimes Make Pain Worse, According To Evidence Review
Actavis Totowa Announces Voluntary Recall at the Retail Level of All Drug Products Manufactured at its Little Falls, New Jersey Facility
FDA Warns Consumers About Potential Problems at Two Baltimore Pharmacies
Imaging Study Of Pain Sheds Light On Mystery Condition
Eastfield student overcomes adversity with academics
Is pain all in the mind?
New research shows why some people are better at coping with pain than others
Spinal implant helps Marine deal with pain from Iraq injury
At‐A‐Glance: The Final Ticket to Work Regulations
Extension of Therapy Cap Exceptions
Medicare Improvements for Patients and Providers Act 2008
Study Currently Recruiting: Cerebrospinal Fluid Repository (CSF)
The Itch
Its mysterious power may be a clue to a new theory about brains and bodies
Gambling on experimental treatment for pain
Dystonia and CRPS Study
Pain doesn't sideline determined animal lover
APF Advocate, PainAid Moderator, and Marine to Participate in LIVE Radio Show
FDA Alert: February 2008 Drug Safety Labeling Changes for 47 drugs now available on web
FDA Alert: ETHEX Corporation Voluntarily Recalls Specific Lots of 30 mg. and 60 mg. Morphine Sulfate Extended Release Tablets Due to the Potential for Oversized Tablets NDC #58177-320-04 & 58177-330-04 Lot Numbers listed below
Son honors father in fundraising RSD walk
Remicade, Enbrel, Humira and Cimzia
FDA Investigating Tumor Necrosis Factor Blockers And Cancer Risk In Children And Young Adults
Curing Chronic Pain In Kids
New Waltham Center Tackles Brain, Body Connection
New Ticket to Work Regulations Create Exciting New Opportunities
One name says it all in local table tennis
Noga Nir-Kistler inspires as she readies for Paralympics
The pain of it all
FDA Alert: Enbrel (etanercept) Prescribing Information Revised To Include A Boxed Warning Regarding The Risk Of Infection, Including Tuberculosis
Quadriplegic woman prepares for round Britain sail
FDA Approves Relistor for Opioid-Induced Constipation
Drug will help reduce effects of drugs like morphine on bowel function
Cheerios to feature veteran with CRPS
Walgreens pulls OxyContin
April 2008 Pain Advocacy Community E-Newsletter: Partners Against Pain
April 2008 Issue of Currents, the E-newsletter of the American Academy of Pain Management
The Mirror Cure for Phantom Pain
First of its kind pediatric rehabilitation center offers hope to chronic pain sufferers
Co-Payments Go Way Up for Drugs With High Prices
How Jersey Fails Injured Workers
American Pain Foundation April E-newsletter
Streator woman has battled symptoms for 28 years
Insurers Faulted as Overloading Social Security
Illinois Advocacy Alert: RSDS Education/Awareness Bill
Submitting articles for the Practical Pain Management Journal
March 2008 Issue of Currents, the e-newletter of the American Academy of Pain Management
Pain lingers 'long after trauma'
'Boot Camps' Treat Pain Sufferers
Rare care in Mexico eases woman's pain
Writing on Complex Regional Pain Syndrome
Going to pains to meet a hero
March 2008 Pain Advocacy Community Newsletter: Partners Against Pain
House Approves Bill on Mental Health Parity
More Expensive Placebos Bring More Relief
FDA Alert: Actavis Recalls Remaining Fentanyl Patches in the US as Precaution
Disability Cases Pending, Pending...
The Truth About Painkillers
7 myths about the risks and dangers of opioid analgesics
Advocacy Alert: The Military Pain Care Act of 2008 (HR 5465) has been introduced in the House of Representatives!
Take a Look at the New Partners Against Pain® Website!
I'm Ill, But Who Really Needs to Know?
Shocking Pain Away (Video)
Actavis Recalls Certain Fentanyl Patches in the US as Precaution
Fentanyl Painkiller Patches Recalled
Patches Containing the Prescription Painkiller Fentanyl Recalled Because of Flaw
FDA Alert: Chattem Icy Hot Heat Therapy Products
Nationwide Recall Due To Reports of First, Second And Third Degree Burns
Q & A's with Dr. Joshua Prager on ABC News (video segments)
FDA
Alert: Medtronic SynchroMed EL Implantable Infusion Pump
FDA Finds Increase in Suicide Symptoms for Patients Using Seizure Medications
FDA Alert: Information on Suicidality and Antiepileptic Drugs
Beating Back the Stigma of Pain Treatment: Paula Abdul's Stardom May Help Cut Negative Perceptions About Chronic Pain, Painkiller Use
Fibromyalgia Pioneer Rethinks Disorder
NJ: Governor Corzine Signs CRPS Education and Research Program Act
Pain Relief for Some, With an Odd Tradeoff
Healthwatch: Complex Regional Pain Syndrome on NJN News (video)
2007
Use of Opioids to Treat Pain in Emergency Departments on the Rise, But Racial Differences in Opioid Use Still Exist
On the Same Wavelength with the Doctor
Improper use of fentanyl pain patches linked to more deaths: FDA
Overpowering pain: Kara Loree's crippling body slams have to get worse before she can get better
Disability
Cases Last Longer as Backlog Rises
Patients
Were Not Told of Misuse of Syringes
WI
woman with CRPS is planning a walk-a-thon to raise research
dollars
RSDSA Honored By Korean CRPS Patients Association
A
Brochure of Hope
9th Annual Bounty of Hope
FENTORA® (fentanyl buccal tablet) [C-II]: IMPORTANT SAFETY INFORMATION FOR PATIENTS AND CAREGIVERS
RSDSA 2007 Conference in Atlanta
"I HAVE CRPS" Cards Available: Informative card helps educate friends and family
National Pain Care Policy Act Introduced in the US House of Representatives!
Verunac Family Awards a Matching Funds Grant
The Rachel Tobias Young Pain Research Investigator Award
2006
2006 RSDSA-funded Research Grants
In Medicine, Evidence can be Confusing
Debilitating Disease
Streator woman fights daily with RSD
Dan Tobias Raises Money for Rachel Tobias Research Award
TSA Security Measures for Persons With Disabilities from the United Spinal Association
Make Plans Now! 2006 Achilles Walk for Hope and Possibility
The Pain Practitioner Special CRPS Issue
The Congressional Briefing on Pain
Medicare Bridge Plan Announced
RSD is Granted an Exception to Outpatient Medicare Physical
Therapy Cap
U.S. to Extend Emergency Rx Coverage
RSDSA Analyzes Results of Internet Survey
NY Times Reports Widepread Problems with Medicare Drug Plans
RSDSA has been asked by a person with CRPS how she can avoid a symptom flare-up, resulting from
being patted down by security personnel at airport security checkpoints
2005
2005 RSDSA-funded Research Grants
2005 Achilles Walk for Hope and Possibility
I Have "The Crazies"
Cheap Shots Wound Disabled
Paula Abdul Reveals She Has RSD
Katrina
The Search for the Killer Painkiller
When It Comes to Severe Pain, Doctors Still Have Much to Learn
FDA Approves Two New Products for Chronic Pain
RSDSA Launches Membership Campaign
Preemptive Analgesia Before Surgery
Lessons from the Front: Questions for Lt. Col Chester C. Buckenmaier, III
Our Future Depends on You
NeutroSpec Linked to Cardiopulmonary Events
FDA Broadens Liver Warning for Cymbalta
FDA Asks Purdue Pharma to Withdraw Palladone for Safety
Reasons
FDA issues Public Health Advisory for Duragesic Patches
How are bone scans used in the diagnosis and treatment
of CRPS?
Biofeedback for CRPS: Why Haven't I Tried That?
2004
New Exhibit Booth Display to Educate Health Care Professionals
Pain… with no relief in sight: Difficult to diagnose and treat Reflex Sympathetic Dystrophy
can lead to a lifelong disability
When pain comes to stay
Early diagnosis is the best hope for RSD nerve illness
In constant pain
'I have no life'
Pain … with no relief in sight
Online Survey
Living with unending pain: Little known of debilitating disease
RSD leaves long-suffering woman in unrelenting agony
RSD: A rare and puzzling disorder
RSD Treatment
Confused about the new Medicare-approved drug discount card? Contact Your Ship!
The scope of pain: Will education prevent CRPS suffering?
RSDSA to Hold International Update On CRPS in San
Diego
Medicare Drug Discount Cards Available in May
Janssen Pharmaceutica Expands Nationwide Recall of 75 Mcg/Hour Duragesic® (fentanyl
transdermal system) CII Patches
Surgery eased RSD pain, but only temporarily
RSDSA mails 57,000 Telltale Signs of CRPS cards to
members of the American Academy of Physicians to increase
awareness
Restriction of pain medication troubling: Guest opinion, Mary Stegman, MD
Online Videos Available
An injury, then never-ending pain
A new law takes aim at improving treatment for little-known condition
Pain, Pain, Go Away: People with reflex sympathetic dystrophy sometimes experience
level-10 agony daily
2003
CRPS Awareness Bill Passed Unanimously
in Pennsylvania
Bounty of Hope 2003 Raises $100,000 for Research and Awareness
Bounty of Hope 2003 Highlights Pediatric CRPS
Taking a New
Look at Pain
RSDSA Launches Redesigned Website
RSDSA Will Sponsor the 2nd International Update on CRPS
2002
New York State Senate passes amendment to public health law for RSD
Updated
December 2, 2010
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