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About Us
The Sneddon's Foundation . . .
was created in 1999 by a single Dutch Sneddon's patient,
Jos Gilsing, with the assistance of Dr. Peter Fritsch and his fellow Sneddon's researchers at Austria's University of Innsbruck. Through Jos's website, Sneddon's patients in
Europe and in the U.S. came together to share their stories for the first time.

In 2006, thanks to Jos' network of Sneddon's patients,
Diane O'Leary of the U.S. was diagnosed with Sneddon's Syndrome after eight years of treatment for the wrong
disease.  Once treated with warfarin, Diane regained functioning and returned to the activities and goals of her life before misdiagnosis. The following year, her sister was diagnosed with Sneddon's and it became clear to them both that a simple exchange of information - first from Jos to Diane and then from Diane to her sister Helen - had utterly transformed both their lives.

In May 2008, Diane O'Leary and her sister Helen O'Leary-Syers, together with Jos Gilsing of the European Sneddon's Foundation, held a meeting of U.S. Sneddon's patients and their families at the National Organization for Rare Disorders in Danbury, Connecticut.

At that meeting, Sneddon's patients Diane, Helen, Darlynn Oberg and Chris Singley shared what they've experienced

and what they've learned about this disease. Family

members Susan and Harvey Jacobvitz and Vicky

Martin shared their concerns as family members anxious to

do what they can to help. The result was an organized set of goals and specific plans for achieving those goals. With that, the U.S. Sneddon's Foundation was formed.


Every patient diagnosed with Sneddon's Syndrome quickly becomes aware of the power of information. Every one of us suffered a period of diagnostic confusion. Many with

confirmed diagnosis have continued to struggle with inappropriate treatments because of doctors' simple lack of information.


Together we've grown clear about how readily our bonds

with one another can lighten the load of this difficult

disease. Together we've understood the impact an organized group of Sneddon's patients can have on the medical community's understanding of this disease. Together we can improve the quality of life of every Sneddon's patient.



Write to us! Tell us your story. Offer suggestions for

developing the foundation. Ask questions and we'll search

the medical literature for answers.

Join us!



The Sneddon's Foundation Board of Directors

Diane O'Leary

Susan Oberg Jacobvitz

Harvey Jacobvitz

Darlynn Tracy Oberg

Helen O'leary-Syers

Abby Diamond Kissiday

Gracie Smith

~ The Sneddon's Foundation: Healing through the Flow of Information ~

Copyright . Sneddon Foundation. All rights reserved.