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News Archive

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

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

Nationwide Registry to "Match" Volunteers with Researchers

Thoughts About Balance When You Have Chronic Pain

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 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


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"

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)


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

Driving Abilities Not Impaired By Moderate, Long-Term Pain Medication Use, Study Suggests

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


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 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 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


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?


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


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


New York State Senate passes amendment to public health law for RSD


Updated December 2, 2010

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