TEA Newsletters

TEA’s newsletter, FootSteps, is a publication intended to inform the EM community, not in any way to provide medical advice.

Newsletter

Spring 2018

March 20, 2018

After months of work with a website design firm, TEA’s new website went live in January. Professional, engaging, easy-to-use—all these describe the new site.

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Newsletter

Fall 2017

October 19, 2017

Thank you to the more than 100 generous donors who answered TEA’s first ever Summer Appeal with gifts totaling almost $7,500.

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Newsletter

Winter 2017

January 1, 2017

Providing education, awareness and community through our website, member services program, newsletter, social media presence and networking programs is TEA’s mission.

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Newsletter

September 2016

September 1, 2016

TEA has moved from an organization with annual membership dues to one with a one-time membership donation to join. Also, TEA’s website’s Articles Library...

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Newsletter

April 2016

April 1, 2016

If you have not seen the drug-company produced video “The Passionate Pursuit of Nav 1.7,” search YouTube or go to...

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Newsletter

November 2015

November 1, 2015

Micro-cooling technologies now exist that are small enough to fit inside a shoe. But, designing a cooling insole is a very complex engineering project.

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Newsletter

Winter 2015

January 1, 2015

“We envision a world with an end to the pain of erythromelalgia and a path to a cure.” That’s TEA’s vision, developed last year, for the first time, by the Board of Directors.

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Newsletter

June 2014

June 1, 2014

The topical gel for EM pain relief now is made as a cream, a Mayo Clinic pharmacist announced this spring.

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Newsletter

December 2013

December 1, 2013

People with inherited EM (IEM) recently participated in trials of two experimental drugs for EM pain. The drug companies developing...

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Newsletter

Spring 2013

March 1, 2013

TEA’s 2012 Annual Appeal raised 77 percent more than any other appeal during the past six years—$25,714. TEA sends just one appeal for funds each year at the end of the year.

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Newsletter

Fall 2012

September 1, 2012

Since 2004, TEA has donated most of its research dollars to studies at Yale that focus on the inherited form of EM. Most of TEA’s members have EM that is not inherited, so why should TEA keep donating funds to Yale?

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Newsletter

Spring 2012

March 1, 2012

The TEA Board of Directors in March voted to gift $40,000 to Yale University to support research on erythromelalgia under the direction of Stephen G. Waxman, M.D., Ph.D.

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Newsletter

Fall 2011

September 1, 2011

Erythromelalgia mutation L823R shifts activation and inactivation of threshold sodium channel Nav1.7 to hyperpolarized potentials...

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Newsletter

November 2010

November 1, 2010

Response was “tremendous” to the invitation in the last FootSteps (Vol. 11, No. 1, 2010) for volunteers with inherited erythromelalgia to join a drug trial in The Netherlands, reports...

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Newsletter

June 2010

June 1, 2010

An experimental drug intended to block or reduce the pain of inherited EM (IEM) will be trialed in people with IEM in Nijmegen, Netherlands, under the supervision of...

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Newsletter

Winter 2009

December 1, 2009

An approximate 76 percent of the respondents to TEA’s 2008 Survey reported often getting moderate to good relief from medication. But not the same one.

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Newsletter

Summer 2009 – Survey Edition

June 1, 2009

This issue of FootSteps contains a question-by-question report of the findings of TEA’s 2008 Member Study. A major project for TEA...

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Newsletter

Winter 2008

December 1, 2008

Members gave generously in response to TEA’s first ever direct-mail appeal for donations. Mailed in Nov. 2007, the appeal had prompted gifts totaling $8,695.00 by Dec...

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Newsletter

Spring 2008

March 1, 2008

After months of consideration by the Board of Directors, TEA gave Yale’s EM research program $45,000 in April. The money came out
of TEA’s Research Fund.

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Newsletter

Fall 2007

September 1, 2007

Do you have a favorite—or not so favorite—charity that sends you one request for do-nations after another, and an-other, and another?

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Newsletter

June 2007

June 1, 2007

As most of you know to find a physician who knows something about EM is very hard. Most of the physicians out there have never heard of EM...

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Newsletter

March 2007

March 1, 2007

Led by dermatologist Mark D.P. Davis, M.D., physicians at the Mayo Clinic in Rochester, MN, U.S., present a new EM treatment and report results of studies testing the effectiveness of diagnostic procedures...

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Newsletter

December 2006

December 1, 2006

“TEA members will be pleased to hear that we are now collaborating in some new work with Dr. Joost Drenth,” said Steven G. Waxman, M.D., Ph.D., director of...

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Newsletter

September 2006

September 1, 2006

If you have visited TEA‘s Web site recently, you will have no-ticed some big changes. While member names and passwords remain the same, even the ―log in box has changed.

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Newsletter

June 2006

June 1, 2006

“There is really no place to find an expert in EM,” Jay S. Cohen, M.D., told the 70 participants during the May 20 teleconference “Dr. Cohen on EM.”

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Newsletter

March 2006

March 1, 2006

What’s new in treating EM will be among the subjects discussed Saturday, May 20, at a teleconference featuring Jay S. Cohen, M.D., and benefiting TEA’s Research Fund.

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Newsletter

December 2005

December 1, 2005

TEA is funding a research study in 2006 that aims to identify a second gene that causes inherited EM. The National Organization for Rare Disorders (NORD) in October...

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Newsletter

June 2005

June 1, 2005

Were you surprised to find this issue of FootSteps in your mailbox? If you were, you’re among the two-thirds of members who...

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Newsletter

March 2005

March 1, 2005

Scientists at Yale University welcomed TEA Vice President Beth Coimbra and Board of Directors member Isabelle Davis March 7, 2005, for lunch and a tour of the...

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Newsletter

December 2004

December 1, 2004

TEA’s Research Fund will be put to use immediately by helping finance ongoing investigations into EM at a Yale University research center.

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Newsletter

September 2004

September 1, 2004

For the first time in its six-year history, TEA will fund a research study seeking answers to the mystery of erythromelalgia (EM).

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Newsletter

June 2004

June 1, 2004

The first fundraising event ever held to benefit The Erythromelalgia Association was a resounding success.

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Newsletter

March 2004

March 1, 2004

By mid-March, more than 200 TEA members completed and returned the TEA survey about EM. TEA Vice President Beth Coimbra, who is handling the project...

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Newsletter

December 2003

December 1, 2003

TEA will be contacting its member during January to ask for their participation in a comprehensive survey about EM.

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Newsletter

September 2003

September 1, 2003

Dr. Joost Drenth is asking for our support for his research in locating the gene that causes erythromelalgia in our families.

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Newsletter

June 2003

June 1, 2003

Over the past year, TEA has worked very hard to create and enhance a professional website for our members. Feedback on this effort has been very favorable.

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Newsletter

March 2003

March 1, 2003

A patch containing 5% lidocaine (Lidoderm) combined with gabapentin for the treatment of post-herpetic neuralgia, lower back pain and painful diabetic...

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Newsletter

September 2002

September 1, 2002

There appear to be several subtypes of erythromelalgia (EM) that respond to different therapies.

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Newsletter

March 2002

March 1, 2002

A modern chronicler of hell might look to the lives of chronic-pain patients for inspiration.

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Newsletter

December 2001

December 1, 2001

The Erythromelalgia Association has created a Medical Advisory Committee (MAC) to address the medical aspects of EM.

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Newsletter

June 2001

June 1, 2001

There’s been some "hot" talk on the yahoo groups about a product with an odd name... PAIN BUST’R II... and 13 people have found some relief from their EM...

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Newsletter

March 2001

March 1, 2001

January brought the first official election of Directors for TEA. For the first time since TEA's inception...

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Newsletter

December 2000

December 1, 2000

There's never been a more important time to consider a donation to the research of erythromelalgia.

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Newsletter

September 2000

September 1, 2000

An amazing breakthrough has been found by our members Dr. Jay Cohen and Karl Granat.

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Newsletter

April 2000

April 1, 2000

This is the hottest story since our... last newsletter! All kidding aside, some of our very own TEA members have realized some success in treatments using the capsaicin creams.

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