Editorial

Editorial

The Sarcoma Advocacy Advisory Committee: a Committee that Never Meets

We have formed a Sarcoma Advocacy Advisory Committee (SAAC) for ESUN. Its members will rarely, if ever, meet physically face-to-face or electronically. Paradoxically, we feel that this committee will be an excellent resource to ESUN and its readers. Each member of the committee is tasked with identifying important advocacy issues that should be presented and discussed in ESUN. They are also tasked with identifying and soliciting authors with relevant background to write articles that deal with these issues and to identify and solicit people who will serve as referees for such articles. We are pleased to announce that the inaugural makeup of SAAC consists of six persons who have an enviable record of helping scores of people in the sarcoma community. They are true resources and role models for all of us. ESUN has a reputation for presenting relevant, timely and accurate articles. We believe that SAAC will extend the range and timeliness of that coverage. The inaugural members of SAAC are (in alphabetical order):

Deborah Buks

Deborah Buks is founder and president of Ward Creative Communications, a Houston public relations firm serving the energy industry and consumer brands such as Proctor & Gamble, Hilton Corporation, and BlueCross BlueShield as well as many of Houston’s most respected businesses. Prior to opening the firm in 1990, Deborah built her career and reputation at some of the world’s largest multi-national public relations firms, including Young & Rubicam, Burson Marstellar and Hill and Knowlton. An accredited professional by the Public Relations Society of America, Deborah has received hundreds of awards for crisis response, writing, strategic programming, special events, product launches and marketing collateral development. She holds a Bachelor of Journalism degree from The University of Texas at Austin, has served on numerous professional association boards, is past president of the Young Entrepreneurs Organization and currently serves on the boards of SARC (Sarcoma Alliance for Research through Collaboration) and Sarcoma Foundation of America.

Rose Burt

Rose is an 18 year survivor/patient of recurrent retroperitoneal liposarcoma. She is a wife, mother, grandmother, sister and friend. She states, "My cancer will never define me. One of the main purposes in my life is to help others with sarcomas." In that vein, she manages four support groups for various types of Sarcomas for ACOR, namely L-SARCOMA (liposarcoma), OSTEO-SARCOMA, RHABDO-KIDS (rhabdomyosarcoma), and SARCOMA. She provides insightful advice to scores of people on these lists on a daily basis.

MiMi Olsson

In July of 2002, MiMi took "a crash course in Childhood Cancer majoring in Sarcoma when my 4 y/o granddaughter was diagnosed with mesenchymal chondrosarcoma". Subsequently, she formed the Yahoo Mesenchymal Chondrosarcoma support group in October 2003 and serves as its moderator. She is also a co-moderator to Yahoo’s Chondrosarcoma online support group which has a 400 plus membership. She belongs to numerous sarcoma support groups and service organizations for both pediatric and adult sarcomas. MiMi is a tireless researcher and provides sarcoma articles and clinical trial information to these groups by subscribing to many online newsletters and medical professional publishing houses as well as monitoring the government clinical trial web site.

Patricia Smith

Patricia’s daughter Krystle was diagnosed with Ewing's Sarcoma in June 2001 and given six months to live at that stage. She lived for nine and died 15th of March 2002. She and her husband Chris’ lives were changed forever. Before this she was working in an IT company after being a stay at home mother for twelve years raising three children, Stephen, Krystle, and Darren. She says, “We were just an ordinary family. I enjoyed being back in the world of work; I thought this was fantastic. But after Krystle died I could never bring myself to go back”. Patricia, who lives in Ireland, has subsequently formed an Irish charity, The Krystle Smith Trust Fund and to date it has raised over 50,000 Euros (approximately $64,000) for sarcoma research. She is a Trustee of the Bone Cancer Research Trust in the UK and a tireless sarcoma advocate.

Mary Sorens

Mary Sorens has a B.S. in Business Administration and resides with her husband in Buffalo, New York. Though she spent most of her twenties as an administrative assistant, her direction shifted significantly after her own osteosarcoma diagnosis. She now works as the founder and administrator of the Adult Bone Cancer Survivors, an interactive website that includes patient experiences, comprehensive resources, and a support forum. She contributes the unique perspective of dealing with dozens of sarcoma patients and survivors on a daily basis, hearing and responding to a variety of needs and concerns that extend into every area of their lives.

Jennifer Weir

Jennifer’s volunteer involvement includes sitting on the Board of Directors of two pediatric cancer fundraising charities – Children’s Cancer Fund and Curing Kids Cancer – and is co-founder of Kevin’s Ewing’s Sarcoma Fund, which raises money specifically for Ewing’s Sarcoma research at UT Southwestern Medical Center. In addition, she is on the Patient and Family Centered Care Council for Children’s Medical Center - Dallas and is on the planning committee for a pediatric bone tumor conference coming up in September. Jennifer has also written a few articles for ESUN and remains active on ACOR’s E-SARC support group. Between these activities, Jennifer scores high school state exit exam essays and attends her children’s various sports activities. Jennifer Weir is a married mother of three children, ages 15, 11 and 7. The youngest of the Weir children was diagnosed with Ewing’s Sarcoma at age five. Jennifer is a graduate of the University of Texas at Austin, with a Bachelor’s of Business Administration in Finance and a concentration in Psychology.

We look forward to the contributions that they will make to ESUN as part of their ongoing contributions to the sarcoma community.

As a postscript, please note that the publication date of ESUN has been moved, for a variety of reasons, from the 1st to the 15th of the month in which an issue is printed.

With hope,

Bruce

Bruce D. Shriver, PhD

Editor-in-Chief, ESUN