The Marta Marx Fund for the Eradication of Scleroderma
Most patient-oriented research in the U.S. is funded by the pharmaceutical industry. Scleroderma, as an "orphan disease," has not traditionally attracted much support or interest.
One man and one woman decided to do something about this.
In 2000, the late Rudolph Juhl, a New York stockbroker, honored his sister, Marta Marx with the largest gift ever made to the Scleroderma Foundation—a $5 million bequest to establish the Marta Marx Fund for the Eradication of Scleroderma.
Mr. Juhl's bequest fulfilled a longstanding promise. Many years ago, Mr. Juhl wrote to Marie Coyle, then President of the Scleroderma Federation, expressing his frustration that drug companies were not doing more to promote research on the cause and cure for scleroderma. Thus began a correspondence, which culminated in a vow by Rudolph Juhl that when he died he would leave money to be used solely for scleroderma research.
In 2002, the Estate of Marta Marx added to the Marta Marx Fund for the Eradication of Scleroderma with an additional gift of $5 million thus making the total gift for scleroderma research $10 million.
In September 2000 the Foundation convened a blue-ribbon group of scleroderma experts in Pittsburgh to plan how to put these new funds to work. As a result, we have now increased our grant amounts and added an overhead expense component. In honor of Mr. Juhl’s gift, the Foundation has designated the Marta Marx Fund for the Eradication of Scleroderma Award to be presented to a recipient of a research grant whose score ranks among the top two scored proposals. We need more generous gifts like Rudolph Juhl's to accomplish the ultimate goal: a cure for scleroderma.
The Mark Flapan Award
The Mark Flapan Award is presented annually to a scleroderma researcher whose proposal for a research grant is ranked highly by the Peer Review Committee of the Scleroderma Foundation. Along with the Marta Marx Eradication of Scleroderma Award, the Flapan Award is one of the two highest ranking grant proposals as scored by the committee.
The award is named in honor of the late psychologist and scleroderma patient whose contributions to the Foundation’s publications and literature of scleroderma paved the way for greater patient understanding.
The Walter and Marie Coyle Research Grant
Marie and Walter Coyle were among the founders of the Scleroderma Foundation, in addition to founding one of its predecessor organizations, the Scleroderma Federation. For more than 30 years, Walter and Marie were tireless volunteers and devoted champions for scleroderma-related causes, working almost full-time for the Foundation’s New England Chapter and the national office of the organization. During their long tenure of service with the Foundation, they both served on the national Board of Directors.
Marie is credited with being the architect of the Foundation’s Peer-Review Research Program.
Both Marie and Walter have been honored as the Scleroderma Foundation’s “National Volunteer of the Year” in recognition for their long and dedicated service to the organization at all levels.
Upon Walter’s passing in 2009, The Walter A. Coyle Memorial Research Grant was established. The grant was renamed to include Marie on the occasion of her retirement and in honor of her 40 years of distinguished volunteer service.
Cogan Family Research Grant
The Cogan Family Research Grant is named in honor of the Cogan Family of Chicago, Illinois, as a result of a major gift made anonymously to the Scleroderma Foundation Greater Chicago Chapter in honor of Leslie Cogan. The grant was first awarded in 2020. Jules and Leslie Cogan have been at the forefront of the Scleroderma Foundation since 1983, leading the formation of what is now the Greater Chicago Chapter of the Scleroderma Foundation. In 1998, they led efforts to merge two national scleroderma organizations into the current Scleroderma Foundation.
The Cogans were also instrumental in creating the first international scientific workshop on scleroderma research, in 1990, 1992, and 1994. Today, the biennial International Workshop on Scleroderma Research is a preeminent scleroderma-focused research congress, the genesis of which is directly related to the formative work of the Cogan family.
Jules and Leslie Cogan and their two sons, Daniel and Tony, are active volunteers and leaders in the Scleroderma Foundation today.