Footsteps Fall 2011 Newsletter is available.  Log in and go to Newsletters - Fall 2011 is at the top of the list!

January 10, 2012
Dr. Jay Cohen’s latest e-newsletter has 3 items about EM:  Jay Cohen, MD has personal experience with EM.  He shares his theories and observations in his latest newsletter at www.medicationsense.com

January 2, 2012
Xenon Pharmaceuticals Recruiting for Clinical Trial:  A clinical trial is underway that will examine the safety and effectiveness of an investigational medication for the treatment of pain from Erythromelalgia.  If you have Primary or Inherited EM, you may be able to participate.  Click here to read the details.

December 8, 2011
TEA's 4th Annual Appeal Letter Mailed Last Week:  Member’s comments about the value of TEA are featured in the 2011 Annual Appeal mailed in early December. The letter asks you to please consider making a generous donation to TEA. You can send a check in the envelope provided with the letter or donate now by clicking on “Donate” on the menu bar. Donations are tax deductible in the USA.  TEA is a 501(c)(3) organization.
One of the member quotes: “It is fantastic to have a dedicated band of people in TEA who care enough to form this worldwide association,” Bill from New Zealand. He wrote his story for FootSteps and gave TEA this ringing endorsement.

August 23, 2011
A Message from Yale University School of Medicine:  We greatly appreciate the interest that people with EM have shown in volunteering for our research.  As a clarification to TEA members about our patient recruitment efforts to study EM, we are at the moment enrolling the following two patient groups in our research studies:

1. Families in which two or more individuals have EM in more than one generation (Inherited EM).
2. People with early-onset EM, i.e., individuals with EM whose symptoms developed during their first 10-15 years of life.
   
   Individuals with inherited EM or early-onset EM who meet the above stated criteria, and are interested in volunteering in our research, may contact us at: neuropathicpain@yale.edu. 

Please note that we are profiling DNA from the above two groups of EM sufferers as part of our research program at Yale.  Because this is a research program and not a clinical service, we are prohibited from disclosing the results of DNA profiling to patients. DNA profiling is very effort-intensive and we are therefore unable to study patients with non-inherited EM and patients with adult-onset EM at this time.  We do however want the entire EM community to know that we are highly committed to finding more effective treatments for all people with EM.

The Erythromelalgia Association has as its mission to identify, educate, and support those suffering EM’s painful symptoms; to help fund research leading to a cure for this rare disorder; to raise public awareness of EM; and to educate healthcare practitioners to recognize and diagnose EM. TEA places a special emphasis on helping identify, educate, support and assist those individuals who do not have access to the Internet. Because most physicians are NOT familiar with erythromelalgia symptoms and/or treatment there is a great need to educate the medical community as well.