2007 Annual Report

Member Awards

Jane Engelberg Memorial Fellowship
Audrey Heimler Special Projects Award
Natalie Weissberger Paul National Achievement and Regional Leadership Awards
State Licensure Award
Additional Awards

The Jane Engelberg Memorial Fellowship

2007 marked the 15th anniversary of the Jane Engelberg Memorial Fellowship. A special session was held at the Annual Education Conference in Kansas City in order to pay tribute to the Engelberg Foundation, founder of JEMF. Audrey Heimler, MS, founding board member and the original JEMF Advisory Chairperson, presented a fascinating history of JEMF along with a snapshot of Jane Engelberg herself. This special session also featured a video of Mr. Alfred B. Engelberg where he thanked NSGC and the JEMF Advisory Group members for their continued support and passion for JEMF.

At the JEMF session held during the 26th Annual Education Conference in Kansas City, all previous award winners were invited to join the 15 year celebration.

2007 Advisory Group
Betsy Gettig, Chair
Michelle Fox
Toni Pollin
Jill Stopfer
Kathy Valverde
Steven Keiles, NSGC Liaison

Purpose: The Jane Engelberg Memorial Fellowship is a $50,000 competitive, peer-reviewed grant that promotes the professional development of individual counselors by funding projects targeted toward the improvement of the practice of genetic counseling. Applicants must be Board Certified or hold active-candidate status (established 1992).

2008 Winner of the Jane Engelberg Memorial Fellowship Award: Kathryn F. Peters, MS

Congratulations to Kathryn F. Peters, MS, for being awarded the 2008 Jane Engelberg Memorial Fellowship Award for her project titled “What the Client Brings to the Session: The Development of an Instrument to Assess Genetic Counseling Client Background, Needs and Expectations.”

Kathryn Peters is a genetic counselor and had been a member of NSGC for 15 years. In addition to clinical work and teaching, Mrs. Peters has been involved in the support of clinical genetics research and has conducted her own research on genetic counseling issues. Her particular interests include genetic counseling clients’ psychosocial adaptation to genetic diagnoses and how genetic counselors may better assess genetic counseling issues within the clinical session. She currently holds a faculty position with the Penn State Institute for Diabetes and Obesity. Genetic counselors seek to tailor their counseling to better meet the background, needs and expectations (BNE) of their clients. However, no standardized measure of the BNE of genetic counseling clients across multiple domains has been created for clinical or research use.

Therefore, the purpose of this project is to create and validate a concise, paper-pencil survey instrument the Genetic Counseling Inventory (GCI), which will assess the BNE of genetic counseling clients as they relate to 1) knowledge of genetic principles, 2) beliefs about the role of genes and genetic testing in health, 3) disease/illness perception 4) genetic risk perception and numeracy skills, 5) psychosocial needs/concerns, and 6) desire/need for information. Items for the GCI will be derived from previous genetic counseling research and clinical experience, and the GCI will be piloted in a community sample of adults. Following this, a revised version of the GCI along with measures of anxiety, decisional conflict, health literacy, and quality of life will be administered to a consumer sample to evaluate the validity of the GCI, assess the feasibility of using the GCI in a clinical setting, and to characterize a clinical sample. The GCI will serve as a research tool for future studies of genetic counseling process, interventions, outcomes, and client satisfaction and has the potential to be a useful adjunct to the counselor-client contracting process.

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The Audrey Heimler Special Projects Award

2007 Committee
Sonja Eubanks, Chair
Leslie Evans, Chair
Matthew Bower
Wendy Kohlmann
Lisa Dellefave
Gwen Fraley
Susan Manley

Purpose: The Audrey Heimler Special Projects Award, a $5,000 competitive, peer-reviewed grant, provides support to one or more genetic counselors for projects that focus on the future of the genetic counseling profession and/or the provision of genetic services. Projects are reviewed on the basis of merit and strength as well as on their vision of the future of the profession (established 1989).

2008 Winner of the Audrey Heimler Special Projects Award: Catherine Reiser, MS

Description of project: Clinical supervision of genetic counseling students by practicing genetic counselors is essential for student development and is a valued professional activity. Despite the critical nature of this activity, literature about methods to train genetic counseling supervisors is sparse. There is, however, a growing body of information on medical faculty development centered on clinical teaching skills. One method that has been shown to be effective is the standardized student, i.e. using trained medical students to simulated scripted behaviors. We, in collaboration with the University of Wisconsin School of Medicine and Public Health Clinical Teaching and Assessment Center will develop and pilot a supervisor training program for genetic counselors, based on the standardized student strategy, to enhance the development of skills in clinical supervision.

We also graciously acknowledge the support of those individuals who donated to the Audrey Heimler Special Projects Fund (AHSPF) this year. A listing of the 2007 AHSPF Donors is as follows:

Sayaka Hashimoto
Audrey Heimler
Randall Heimler
Richard Heimler
Ronald Heimler
Robina Elaine Ingram-Rich
Cindy J.C. Johnson
Barbara Kunz
Peter J. Levonian
Julie Rutberg
Charlene J. Schulz
Hody Lyon Tannenbaum

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Natalie Weissberger Paul National Achievement Award and Regional Leadership Awards

Nominations for the Natalie Weissberger Paul National Achievement Award and Regional Leadership Awards are solicited from NSGC’s membership. These awards recognize leadership and contributions to the profession. The 2007 Awards Committee would like to thank all members who nominated their colleagues during the Call for Nominations. Many outstanding NSGC volunteers and leaders were nominated during this process. The Awards Committee is pleased to announce the winners of the 2007 Natalie Weissberger Paul and Regional Leadership Awards.

Natalie Weissberger Paul National Achievement Award
Natalie Weissberger Paul retired in 1993 after a long career with the March of Dimes Birth Defects Foundation. A long-time advocate for genetic counselors and NSGC, she was instrumental in promoting the profession in its early years and in securing financial support for numerous initial projects and publications. NSGC established this award in 1994. Natalie died in January 1996. This award honors one outstanding member who has served NSGC with exemplary national achievements and volunteer activities on behalf of NSGC and the profession.

The Winner of the 2007 Natalie Weissberger Paul National Achievement Award: Robin Bennett, MS, CGC

Robin Bennett is a true leader in the field of genetic counseling. Her efforts to promote and advance the genetic counseling profession are inspirational. Robin is currently the Assistant Director of the University of Washington Medical Genetics Clinic and recently became the first genetic counselor to obtain the title of Assistant Professor at UWMC within the Department of Medicine, Division of Medical Genetics. Robin received her MS in Human Genetics from Sarah Lawrence College in 1984 and has been an active member of the NSGC ever since. She is also a founding member of the American Board of Genetic Counseling.

Robin has long been involved in teaching students enrolled in programs in medicine, social work and genetic counseling. She has served as a consultant to numerous clinics and cancer prevention programs and served as a scientific advisor on the Fabry International Research Exchange for Transkaryotic Therapies. Throughout her career she has won several awards including an NSGC Regional Leadership Award (Region VI) in 1995. In 2006 she was honored at UWMC with the Outstanding Patient and Family Educator Award.

In addition to her professional roles and responsibilities, Robin has made the time to contribute to NSGC since she became a genetic counselor in 1984. Robin has served on the NSGC Board of Directors in several capacities including Region VI Representative (1992-1994), Chair of the Genetics Services Committee and as President (2002). She has been a member of several SIGs including the Cancer, Metabolic and Neurogenetic SIGs, as well as the founder of the Telegenetics SIG. Robin has served on the Professional Issues and Genetic Services Committees for many years and the Planning and Abstract Review Committee for the Annual Education Conference. She serves as Chair of the Pedigree Standardization Task Force, Code of Ethics Revision Work Group and the Consanguinity Working Group. Many of us remember when the latter group’s publication was picked up for worldwide press, including the front page of the New York Times. Robin continues her legacy of outstanding service to NSGC and the field as a member of the Genetic Counseling Foundation Board of Directors and the Beverly Rollnick Memorial Lecture Committee.

Robin has also dedicated time to the American Board of Genetic Counseling. She has spent over 10 years as an Accreditation Site Visitor for ABGC, chaired the ABGC Nominating Committee in 1997 and is a member of the Specialty Certification Committee. Robin has also served in volunteer positions for the ASHG, ACMG, NCHPEG, the CDC, the Washington State Department of Health, the National Coalition for Genetic Fairness, the Cancer Genetics Network, the Pacific Northwest Regional Genetics Group, the Council of Regional Genetics Networks and numerous genetic support groups.

Robin has received many grants and has authored more than 30 articles, several book chapters and newsletters as well as patient educational materials. She has reviewed articles for many journals including the Journal of Genetic Counseling, American Journal of Human Genetics, Patient and Family Education, American Journal of Medical Genetics and Clinical Genetics. Robin’s tireless and selfless contributions to the field of genetic counseling are tremendous and serve as an inspiration to new genetic counselors and those that have been in the field for decades.

Regional Leadership Awards
The Regional Leadership Awards were initiated in 1994 to recognize outstanding regional achievements and volunteer activities on behalf of the Society and the profession.

Region I Leadership Award Winner: Stephanie Brewster

Professionally, Stephanie Brewster began in a traditional role as a prenatal genetic counselor at Women and Infant’s Hospital in Rhode Island and at The Brooklyn Hospital Center in Brooklyn, NY, but in more recent years she has come into her own in the world of research. She has been described as, “...Without a doubt one of the most experienced and knowledgeable research genetic counselors in Region I (in fact, in the NSGC as well).” She shares her talents as a supervisor to junior genetic counselors and as an advisor to investigators at Children’s Hospital.

Stephanie has been a volunteer for NSGC since she became a member in 1993. She got her feet wet as the State Representative for Rhode Island and subsequently participated in the Private Industry SIG, and she served on the Research Subcommittee of the Genetic Services Committee. Recently she has been a driving force behind the creation and passage of the licensure bill for Massachusetts. Stephanie’s previous experiences on the AEC Abstract Committee from 2004 to 2006, the Short Course Committee from 2003 to 2004 and the Practice Based Symposium Committee from 2001 to 2002 and as Communication Chair for the 2004 meeting will surely serve her well as 2008 AEC co-chair. Where she finds additional time to donate to New England Regional Genetics Group as member of the Societal Concerns/Education Committee and to the American Board of Genetic Counselors as CEU reviewer remains a mystery. NSGC is lucky to have her.

Region II Leadership Award Winner: Kathleen Valverde

Kathleen Valverde has worked in Region II since her graduation from Sarah Lawrence College. In addition to her clinical experience at several locations in the New York area, Kathy has been involved in the training of hundreds of genetic counselors as Fieldwork Placement Facilitator at Sarah Lawrence and more recently as Assistant Director/Clinical Coordinator and now as Director of the Arcadia University Genetic Counseling Program. Throughout her career, Kathy has been active in many of our professional organizations: NSGC, ABGC, Philadelphia Genetics Group and the Genetics Network of the Empire State. Kathy served on the NSGC Board of Directors as regional representative from 1996 to 1998 and chaired the Region II conference in 1998. She served as an ethics subcommittee member from 1999 to 2002. For ABGC, Kathy has served as a site visitor for accredited training sites and as a member of the nominating committee. She is currently in the midst of a six year term on the Board for Jane Engleberg Memorial Fellowship and is serving as treasurer. Kathy has also been very involved in the cystic fibrosis community, working on the abstract review committee for the CF foundation annual conference, the CF DNA steering committee for the Genetic Network of the Empire State and as the chair of the NSGC Cystic Fibrosis Ad Hoc Committee in the early 1990’s. Kathy has contributed to the Journal of Genetic Counseling and Perspectives many times, including recently a personal account of BRCA family history. Given the depth of her contributions to the profession, it is a pleasure to present the Region II leadership award to Kathleen Valverde.

Region III Leadership Award Winner: Courtney Rowell

Courtney Rowell, MS, MBA, is an example of a genetic counselor that raises the bar for the genetic counseling profession as well as the National Society of Genetic Counselor’s (NSGC). Courtney received her undergraduate degree in Biology from Emory University in 1998 and her MS in Genetic Counseling from the University of South Carolina School of Medicine in 2001. Courtney also received her MBA from the University of North Carolina at Chapel Hill, Kenan-Flagler Business School in 2005. She is currently a BRACAnalysis® Product Manager with Myriad Genetic Laboratories, Inc.

Courtney began her NSGC career, as a student, eight years ago by attending the Annual Education Conference (AEC). Courtney’s consistent involvement in NSGC is too numerous to list, but is reflected in almost every aspect of organizing the AEC for the last seven years. She is currently the Co-chair of the 2007 AEC. Courtney’s public service to this organization is also reflected in her past involvement on the Professional Issues Committee, Membership Committee, and Nominating Committee, Diversity SIG (subcommittee), Infertility SIG and NSGC Educational Summit Member. Courtney currently serves as a member of the Industry SIG and is currently the treasure for the Cancer SIG and a member of the Finance Committee.

In addition to working behind the scenes in NSGC, Courtney should also be recognized for her dedication to bridging the gap between the traditional role of the genetic counselor and the evolving role of non-traditional genetic counseling into the corporate world. Courtney has used her position in the private sector to educate insurers and other corporate entities about genetic services. Beyond her service within NSGC for the last nine years, she has also demonstrated visibility for the genetic counseling profession by serving as the president of the Atlanta Chapter of the Healthcare Businesswomen’s Association from January to June of 2007.

Those who know Courtney know would agree that she does not settle for what is expected of her. Her vision of the genetic counselor is not limited to the traditional roles that we have come to know and understand. Courtney has taken her vision of the genetic counseling profession to another level. She has an intricate knowledge of not only the genetic counseling profession, but the NSGC organization and corporate America. With this unique combination of expertise and dedication, Courtney is a genetic counselor that raises the bar when it comes to exemplifying professionalism, leadership and dedication to this organization.

Both young and experienced genetic counselors who are looking to become more involved in the NSGC should look to Courtney an example of a volunteer her has graciously served her organization and profession.

Region IV Leadership Award Winner: Becky Butler

Becky has been a pioneer in the expansion of genetic services in Region IV during her 34 year career. Becky, a licensed certified social worker, is the Director of the Mid-America Genetic Education Consortium (MAGEC) an innovative distance education program, involving the collaboration of academic health institutions in four states to educate master’s level genetic counselors. She conceived, wrote, developed and implemented this program and served as the PI on the grant which funded it, a $5 million Congressionally-awarded grant through the US Department of Education. The Genetic Counseling Department in the College of Health Related Professions will graduate the first class in May 2008. She will continue as a part-time instructor in the program.

Ms. Butler has worked at the University of Arkansas for Medical Sciences (UAMS) since 1983, and while there she has worked in reproductive and cancer genetics and telemedicine. Indeed, Becky has led the way for telemedicine within the GC profession using telemedicine for education, clinical, and research within the genetic counseling profession. She presented a workshop at a NSGC annual meeting to standing room only crowds and because of this interest was asked to present on telemedicine at the Janus Series at a subsequent meeting. She now serves as co-chair of a newly formed Telegenetics Special Interest Group (SIG).She has also presented on genetic services via telemedicine to the American Society of Human Genetics, the American College of Medical Genetics, and ATA.

Through a special allocation of funds from the Great Plains Clinical Genetics Network, she created a support group on Huntington Disease over telemedicine as well. She specializes in the development of clinical genetic services based on research findings and is currently working with the Department of Psychiatry to develop a psychiatric genetics clinic and numerous tele-psychiatric clinics around the state. She teaches clinical supervision online to genetic counselors in six states, and is currently developing an online course on telemedicine for clinical practitioners.

Becky is truly a leader for Region IV and stands as a mentor to colleagues, students, physicians and collaborative allied health professionals/agencies alike.

Region V Leadership Award Winner: Karen Heller

Karen Heller is one of those pioneers who entered the profession in a non-traditional route. A native of South Africa, she came to Texas in 1980 and attended the University of North Texas. Although the school did not a have formal genetic counseling program in place at that time Karen created her own curriculum and obtained her Master of Science degree in Human Genetics and Counseling in 1982. She was certified in genetic counseling in 1984 by the American Board of Medical Genetics and is a charter member of he American Board on Genetic Counseling.

Karen’s work experience can be described as pioneering as well as diverse. She was one of the first genetic counselors to hold a position in Dallas and was instrumental in introducing the value of genetic counselors as a part of the genetics team to the physicians and hospitals in North Texas. She helped to create the Genetics and Metabolism Clinic at Children’s Medical Center of Dallas, even volunteering her time the first year until the hospital agreed that she should be compensated for her expertise. She also developed and implemented one of the early Huntington Disease testing programs and, in her spare time, was a consultant to one of the earliest commercial DNA laboratories. After 10 years of growing this service, Karen then left to “hang her shingle” and dove into the scary world of private practice genetic counseling. This was in the early 90’s, at a time when most of us only began to dream that as a possible career move.

Karen had a successful business providing independent and contract genetic counseling services for 10 years. For the last three years, she has worked in the UT Southwestern Cytogenetics Laboratory as a genetic counselor and educator but also lends her business savvy and marketing expertise to the development and implementation of new tests and also to the intricacies of insurance contract negotiation. Karen has over 16 publications to her name and is involved with the education of nurses, medical students, residents, fellows as well as the general public.

Karen’s contributions to her profession are equally significant and diverse. She has always been passionately involved in billing and reimbursement issues and is the chair of the NSGC Billing and Reimbursement subcommittee and served on the B&R Task Force. Karen was one of the charter members of the working group for GC licensure in Texas and is now on the Board of Directors of the Texas Society of Genetic Counselors as the Membership Committee chair. She was on the planning committee of the groundbreaking and successful NSGC Region V Virtual Education Meeting which occurred in September. She has been an ABGC examination item writer and serves on committees for the American College of Medical Genetics and the Mountain States Genetics Network.

Fortunately, her colleagues recognize what an asset she is. One states, “Karen has always been a champion of professional education and career development for all genetic counselors, especially those closest to her in Texas.” Another wrote, “She takes on every challenge with great enthusiasm. What’s more, she has an uncanny ability to generate group enthusiasm so that, when necessary, the group can face those challenges that we would otherwise avoid. Karen retains her sense of humor at all times, and she is an absolutely wonderful person to work with. I have been extremely fortunate to have her as a member of my team.”

Since Karen has spent all of her 25 years as a genetic counselor in Region V, and the marvelous state of Texas, it is with great privilege that we honor Karen Heller with the Region V Leadership Award.

Region VI Leadership Award Winner: Michelle Fox

It is an absolute honor to present the Region VI leadership award to Michelle Fox, MS, CGC. Michelle is somewhat of a celebrity in our profession and her passion for the field of genetic counseling is contagious. Michelle’s numerous nominations this year exemplify her far-reaching recognition by many individuals – current and former co-workers, esteemed colleagues, students and friends. As one colleague wrote:

“I first heard of ‘Michelle Fox’ when I was a student in Baltimore. She was supposed to be this big deal counselor, a classmate told me. I finally got to meet THE ‘Michelle Fox’ when I started working at UCLA. In fact, she was one of the people who interviewed me! Working in the Prenatal Center, I did not see Michelle often, but I knew I could call her for anything. More recently, I have seen her regularly in the Pediatrics office. She has a tremendous memory for patients, she goes out of her way for patients and doctors, and she spends time with students guiding them through their rotation. Her enthusiasm, involvement and commitment are amazing.”

Michelle began her career after graduating from Sarah Lawrence College in 1979. She moved West in 1981 after working for North Shore Community Hospital in New York for two years. In 1981 she began her long standing position in Pediatrics at UCLA Medical Center in West Los Angeles. She has worked at UCLA for over 26 years coordinating the Genetics Clinic for the Department of Pediatrics, and was promoted to Adjunct Assistant Professor of Pediatrics in 2003. Michelle has been honored at UCLA by receiving a Staff Achievement Award as well as the STAR award from the Department of Pediatrics. She has also served as a genetics consultant to the Santa Monica Hospital and Northridge Medical Center.

Her contributions to the medical genetics and genetic counseling professions are boundless. Michelle is extremely well published including several peer reviewed publications, numerous abstracts and as co-author of a chapter in the text “Essentials of Obstetrics and Gynecology”. She has also published a CD Rom on Genetics in Clinical Practice and has given numerous presentations and media interviews and continues to give presentations on a variety of issues. Michelle worked for the Human Genome Project Study Section of the NIH on “Ethical, Legal and Social Issues Applications.” She has been a co-investigator on two grants and has served on numerous local and national working groups related to genetics and health care delivery.

Michelle has also found time to share her expertise through teaching and supervision of genetic counseling students, medical students, residents and fellows. She served on the Steering Committee for the California State Northridge Genetic Counseling Program and has made countless contributions to the Program through clinical supervision, mentoring thesis projects, lecturing each year, and serving on the Executive Committee for many years. She currently serves on the Los Angeles Board of the Huntington Disease Society of America and as Associate Editor of Genetics in Medicine.

Michelle has also been actively involved throughout her career with NSGC, ABGC and the ACMG. Michelle has served on various NSGC committees and currently serves on the NSGC Nominating Committee and as Chair of the Jane Engelberg Memorial Fellowship Advisory Board. She also helped develop education programs for several AECs. She has served as a “Site Visit Team Leader” for the ABGC’s Program Accreditation Committee and on the ABGC Nominating Committee. For the ACMG she has served on the Program, Membership and Education Committees since its incorporation in 1991. Michelle remains actively involved with all three organizations.

Not only is Michelle an accomplished professional, she is truly a delightful person and an inspiration to all who meet her. As one student commented “I am so glad to hear she is receiving this award. She is such a wonderful role model for GC students”. Another colleague describes her well… “I have always found Michelle to be gracious and genuine with a sense of humor”.

Michelle is, indeed, gracious, genuine and always vibrant. Congratulations Michelle - Region VI is proud to honor you and your accomplishments!

2007 Awards Committee
Maria DelVecchio, Chair
Cathy Wicklund
Renee Chard
Ellen Schlenker
Tene Hamilton Franklin
Elizabeth Leeth
Karen Copeland
Fiona Field

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State Licensure Award

Washington state was awarded a Rolling grant of $478 to support travel, conference calls and establishment of a website for the Washington State Genetic Counselor Network, working to pursue licensure. New York State was awarded $4865 in the Spring 2007 cycle to support creation of a website and online lobbying tool to promote state-wide coordination of lobbying activities and ongoing education of legislators to achieve licensure.

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Additional Award Winner Info

In an effort to increase the diversity of the membership of the NSGC, the Diversity Subcommittee of the Membership Committee provided two scholarships to students planning to attend the NSGC AEC meeting in Kansas City, Missouri in October 2007.

Diversity scholarship: Granted to students who are from communities underrepresented in the NSGC may apply, including, but not limited to, those of minority cultural/ethnic backgrounds and those with disabilities.

• The winner of the 2007 Diversity Award was Melanie A. Charles

• The winner of the 2007 General Award was Thea A. Owens

The Familial Cancer Risk Special Interest Group (SIG) Grant Award (CSGA) was created in 2002 to provide money for smaller projects that focus on the provision and study of cancer genetic services. The winners of the 2007 CA-SIG Grant Award and their projects are as follows:

• Kristin Baker Niendorf, MS and Thomas Amatruda, MD for their project titled Hereditary Melanoma: Dermatologists’ Knowledge and Practice
• Erin Miller, MS, Courtney Doughty, BS, and Jennifer Gamm MS, CGC for their project titled The Impact of BRCA1/2 Post-Test Result Disclosure Method on Patient Knowledge and Satisfaction: A Retrospective Study