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SJS World

The good folks at SJS World have a new location for the superb discussion forum. If you are a 'SJS' sufferer and have yet to visit the SJS World Forum then do so now. What is it and what do they offer? Quite simply it is a discussion forum for people with SJS and their families to voice there concerns, advice, tips, stories and fellowship. It is a caring community where all are made most welcome. I have found it to be informative and fun. Sometimes you may simply want to have a good ole rant, in the knowledge that you will get a sympathetic hearing. To visit click on the link at the bottom left of the menu on every page, I strongly recommend it.

The University of Pennsylvania Medical Center

is one of the few specialized centers in the country that treats Sjogren's. Anthony Winsock and his wife, come from West Wyoming to Philadelphia often to see Dr. Frederick Vivino. He examines Winsock, "Yes your tongue is still dry, and your lips look dry as well ."

Sjogren's changed Anthony's life dramatically. "And my face went paralyzed, I couldn't talk, I couldn't swallow, or eat, I got spinal meningitis from it and swelling of the brain," he says.

Four-million Americans are diagnosed with the disease each year. So, why don't we hear much about it? Dr. Vivino, "It is hard to test for it because it affects the mouth, the eyes, the joints, various parts of the body. And there are five or six different tests we ask the patient to do before we decide if they have the disease or not."

Caught early, the symptoms can be treated. "Many of the drugs that are used to treat rheumatoid arthritis and systemic lupus, which are two closely related disorders, can also be used to treat Sjogren's disease as well," Dr. Vivino says. As for Anthony Winsock, he tries to maintain his sense of humor, "I'm older now and I retired. I'm just, whatever time I have left (I'm) with Dr. Vivino, he's going to treat me until the end."

Second Annual Sjogren's Walkabout

The Penn Sjogren's Syndrome Center and the Philadelphia Regional Chapter of the Sjogren's Syndrome Foundation are co-sponsoring the second annual Sjogren's Walkabout on June 3, 2006. Patients and their families are invited to attend the Walkabout and help to increase awareness of the disease and raise money for a cure. The Walkabout will have plenty of family fun, including the walk, a relay race for children, various children's activities, a cardiovascular warm up, refreshments, prizes, and much more! Corporate sponsorship or sponsorship for walking parties can be arranged by calling 1-800-475-6473.

The Sjogren's Syndrome Foundation

sjogrens syndrome

is very proud of the work we accomplish and the high standards we hold ourselves to while working towards our mission. As a result, we are extremely excited that the National Health Council recently recognized the SSF as being in compliance with the Council's Standards of Excellence.

The National Health Council’s Standards of Excellence ensure that members of the council maintain the "highest standards of efficiency, accountability and public stewardship. Organizations meeting the standards have proven themselves worthy of the public's support."

The Standards of Excellence are over 40 specific standards defined by the National Health Council which focus on all aspects of managing a Volunteer Health Agency. These standards are focused on good governance, transparency and ethical practices. Moreover, the council’s standards are more extensive than those of many charity watchdog groups, covering or expanding on such areas as corporate relationships, fundraising standards and operations.

I am proud the Sjogren's Syndrome Foundation has met all NHC standards. The staff and Board of Directors worked diligently to make this happen and we continue to strive at deserving your support," said Steven Taylor, Chief Executive Officer of the Sjogren's Syndrome Foundation The National Health Council is the recognized leader in promoting the health of all people by advancing the voluntary health movement.

For more information on the National Health Council and their Standards of Excellence, you can visit them online at http://www.nationalhealthcouncil.org/aboutus/soe.htm

June 10, 2006
Holiday Inn Midtown
New York City

Start planning today to leave for the “city that doesn't sleep” — New York, New York.

The Sjogren's Syndrome Foundation has stayed awake nights to plan an exciting program of excellent speakers who will bring you fresh new insights about your disease. You definitely will want to be there to learn about the latest treatments for your eyes, mouth and joints as well as creative ideas for conserving your energy — quality information that can enhance the quality of your life.

And what better setting could there be to enjoy this educational experience than New York, New York? The Statue of Liberty, the Empire State Building, Central Park, Carnegie Hall, Greenwich Village, Grand Central Station, Broadway and Times Square create a magnificent backdrop for learning and will provide some exceptional sightseeing before or after the seminar.

PROGRAM

Saturday, June 10, 2006
10:00 am - 3:10 pm
Registration and exhibits begin at 9:00 am

Harry Spiera, MD, (Moderator), Chief of the division of Rheumatology at Mount Sinai Medical Center and School of Medicine, will be the moderator.

Overview of Sjogren's Syndrome
Steve Carsons, MD, Chief, Division of Rheumatology, Clinical Immunology and Allergy at Winthrop University Hospital in Mineola, New York, will outline the many aspects of Sjogren’s syndrome.

Dentists: What They See, Hear, and Should Do
Jason M. Tanzer, DMD, PhD, FACD, DHC, Professor of Oral Diagnosis in the School of Dental Medicine and Professor of Laboratory Medicine in the School of Medicine, both at the University of Connecticut, will discuss the role of dentists regarding treatment of Sjogren's syndrome.

Dry Eye Disease: The Pathway to New Treatments
Penny A. Asbell, MD, FACS, MBA, Professor of Ophthalmology and Director of the Cornea Service and Refractive Surgery Center at the Mount Sinai Medical Center in New York City, will describe the latest methods available for treating dry eyes.

Strategies to Conserve Energy for Better Living: From an Occupational Therapy Perspective
Leslie D. Walker, OTR, CHT, a licensed Occupational Therapist and Certified Hand Therapist with Heartland Rehabilitation Services in Sicklerville, New Jersey, will try to improve your quality of life by suggesting ways to use your energy more efficiently.

http://www.sjogrens.org/seminars/2006_seminar_nyc.html

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