The Origin of Support Groups for Prostate Cancer Survivors and Their Families  
 
UsToo Logos through years By Edward Kaps, John Moenck, and Gerald Chodak, MD

Reprinted with permission by American Foundation of Urologic Disease
Originally Published: November, 2001 in Family Urology Magazine, [ Vol 6, Iss 4 ] 

Edward Kaps has been fighting prostate cancer for 23 years. First diagnosed in 1978 he elected radiation therapy treatment; in 1988 he had a radical prostatectomy; and in 1992 he went to hormone therapy. In the spring of 2001 he elected to stop hormone therapy and currently has an undetectable PSA. A retired General Motors manager, Edward sits on several national Boards of Directors including the AFUD Board of Directors.

John Moenck is a prostate cancer survivor and activist. 

Gerald Chodak, M.D., is the Director of the Midwest Prostate and Urology Health Center and a Professor of Surgery at the University of Chicago.

In early 1990 Dr. Gerald Chodak, a Chicago urologist, wrote a letter to his prostate cancer patients indicating that several of his patients had expressed an interest in forming a support group for men with prostate cancer. This notion was similar to the nationwide Y-Me National Breast Cancer Organization that was formed for women with breast cancer.

On February 27, 1990, 22 people responded to Dr. Chodak's invitation and attended an initial meeting at his office. Mr. Ed von Holst, prostate cancer survivor, and two other men spoke on behalf of starting a support group. After considerable discussion, the group decided they wanted to start a support group for prostate cancer patients and their families.

Dr. Chodak asked them to indicate their interest in helping facilitate future meetings. The following men agreed to help: John DeBoer, Edward von Holst, Edward Kaps, John Moenck and Vincent Young. These volunteers became the co-founders of the country's first prostate cancer support group.

Shortly thereafter, the following officer positions were accepted by the support group members: Edward Kaps, Chairman/Treasurer; John DeBoer, Vice Chairman; Edward von Holst, Vice Chairman; John Moenck, Secretary; and Vincent Young, Assistant Secretary. Us Too Founders, John DeBoer, John Moenck, Edward von Holst, Edward C. Kaps, Vincent Young

In early March 1990, Ed von Holst and Edward Kaps planned the second meeting of the larger group. Arrangements were made by Dr. Chodak to have Dr. Nicholas J. Volgelzang address the group to discuss radiation therapy for prostate cancer.

Through August of 1990 meetings were held at the University of Chicago Hospital every month and each of the officers took turns conducting the meeting. Several names were proposed for the group and Edward Kaps suggested “Us TOO” thinking this name might work for prostate cancer as well as the name “Y-Me” did for breast cancer.

In August 1990, Dr. Flanigan from Loyola University Medical Center in Chicago asked Dr. Chodak if his group would come and help him start a support group at Loyola. John Moenck and Ed Kaps met with Dr. Flanigan and on September 25, 1990 the second Us TOO support group was initiated. A hospital in Hinsdale, Illinois became number three and the fourth was Northwestern University, which was started in late December 1990.

Dr. Chodak made arrangements for the Us TOO leaders to meet with representatives of I.C.I. Pharmaceuticals, today known as AstraZeneca. I.C.I. indicated that they had been active in supporting breast cancer support groups and wanted to be involved with prostate cancer support groups as well. Today AstraZeneca is still a major contributor to Us TOO.

The officers decided that Us TOO should apply for 501(c)(3) status. On June 8, 1990 US TOO was issued a certificate from the Secretary of the State of Illinois for its incorporation. On November 7, 1990 Us TOO was officially recognized as a 501(c)(3) organization under the Charitable Trust Act and the Illinois Solicitation Act.

In the fall of 1990, through the efforts of Dr. Chodak, Edward Kaps met with Dr. C. Eugene Carlton, Jr., a member of the boards of the American Urological Association (AUA) and The American Foundation for Urologic Disease, Inc. (AFUD). Dr. Carlton was told of the support group’s work and asked Mr. Kaps if he would consider a position on the AFUD Board of Directors. In October 1990 the officers of US TOO approved Edward Kaps to sit on the board of directors of AFUD.

In January 1991, Edward Kaps attended his first meeting with AFUD and was challenged to expand his support group efforts into other areas of the United States. To help Us TOO accomplish this task, AFUD mailed letters to all AUA urologists informing them of the Us TOO program. Edward Kaps traveled throughout the country to discuss the support group program. He also went to Canada and Turkey as part of this effort.

During this time of growth, the work load was overwhelming the five founders and in 1991 AFUD hired an administrator, Brooke Moran, to run the support group program. Many of the funds required to administer the growing efforts were donated by ZENECA (AstraZeneca) and the remainder came from other AFUD sources.

By the end of 1992, Regional Directors were appointed to be responsible for all areas of United States and Canada. By June 1993, barely three years after its inception, there were more than 170 active prostate cancer support groups as a result of efforts made by AFUD and Us TOO.

Throughout this process the Us TOO officers worked as a team. Uncountable hours were spent by each of the five founders to raise awareness and to help survivors and their families.

From February 1990 through June 1993 the name Us TOO was recognized as a leader in support groups for prostate cancer survivors and their families. Concurrently, there was another significant effort being headed by Mr. Jim Mullen of Sarasota, Florida. In April 1990 Jim Mullen formed Man to Man, a prostate cancer support group. The first group in Sarasota Florida is still in existence today. Many who attended Jim Mullen's support groups were vacationing in Florida and upon returning home they started groups all over the U.S. and Canada. Today, the large Man to Man support group network is administered by the American Cancer Society. Many prostate cancer organizations have formed since February 1990.

Additionally, the American Cancer Society (Man to Man), The National Prostate Cancer Coalition, (an advocate for more prostate cancer research), Cap Cure and AFUD are among the larger organizations who are continuously supporting prostate cancer research and treatment through education and advocacy at the state and national levels. Prostate cancer can be an important learning experience. We must remember that no matter how old we are, cancer is still frightening. Through participating in support groups, men of all ages and their families can find friends to share the journey. Together we are learning to cope through knowledge and hope.

 
 

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