2016 Annual report - ISONG Annual Report ISONG.pdf3. Initiatives: NP pre-conference educational product and checklist for webinar marketing/linear action plan Specific Goals set at

www.isong.org

Annual Report

International Society

of Nurses in Genetics

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2018 Annual Report

International Society of Nurses in Genetics

Table of Contents 2018 BOARD OF DIRECTORS .......................................................................................................................................2

MISSION & VISION of ISONG ......................................................................................................................................3

PRESIDENT’S FINAL REPORT .......................................................................................................................................4

COMMITTEE REPORTS ................................................................................................................................................5

Bylaws Committee ..................................................................................................................................................5

Communications Committee ..................................................................................................................................5

Congress Planning Committee ...............................................................................................................................6

Development Committee .......................................................................................................................................7

Education Committee .............................................................................................................................................7

Ethics and Public Policy Committee .......................................................................................................................8

Global Membership Committee .......................................................................................................................... 10

Nominations & Awards Committee..................................................................................................................... 12

Professional Practice Committee ........................................................................................................................ 13

Research Committee ........................................................................................................................................... 14

BOARD REPORTS ...................................................................................................................................................... 17

Treasurer Report ................................................................................................................................................. 17

Secretary Report .................................................................................................................................................. 17

Student Representative Report ........................................................................................................................... 18

EXECUTIVE DIRECTOR’S REPORT ............................................................................................................................. 19

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2018 BOARD OF DIRECTORS

Thank you to our 2018 Board of Directors who graciously spent their time and energy to ensure ISONG reached

their many goals and aspirations in 2018!

PRESIDENT Mindy Tinkle, PhD, RN, WHNP-BC, FAAN Albuquerque, NM USA

PRESIDENT – ELECT Cathy Read, PhD, RN Bedford, MA USA

PAST PRESIDENT Beth L. Pestka, MS, PMHCNS-BC, AGN-BC Rochester, MN USA

TREASURER Rebecca Kronk, PhD, MSN, CRNP McKees Rocks, PA USA

SECRETARY Jennifer R. Dungan, PhD, RN Durham, NC USA

MEMBER AT LARGE Sivia Barnoy RN, PhD Tel-Aviv, Israel

STUDENT REPRESENTATIVE Caitlin Dreisbach, BSN, RN PhD Student Charlottesville, VA USA

MEMBER AT LARGE Sue W. Wesmiller, RN, PhD Pittsburgh, PA USA

EXECUTIVE DIRECTOR

Beth Kassalen, MBA

Pittsburgh, PA USA

ASSOCIATION MANAGER Linda Mason Pittsburgh, PA USA

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MISSION & VISION of ISONG Mission

To serve both the nursing profession and the public. ISONG fosters and advocates for the scientific and

professional development of its members and the nursing community, in the discovery, interpretation,

application, and management of genomic information, for the promotion of the public's health and wellbeing.

ISONG advocates for public understanding of genomic health and use of genomic information.

Vision

Caring for people’s genetic and genomic health throughout the lifespan and across the continuum of health and

disease.

Goals

Global community

Build and sustain a vibrant international community for the development of nurses in genetics and genomics in

relation to education, research and professional practice that enhances social capital by:

• fostering effective communication and networking with nursing organizations and other genetics

specialty groups;

• promoting interprofessional collaboration in the care of people, families, and communities at risk for

genetic conditions;

• providing a forum for education and support for nurses providing genetic- and genomics-based

healthcare.

Integration

Promote the integration of genetics and genomics across nursing education, research and care at all levels of

professional practice, through:

• promoting engagement of nurses with genetics and genomics;

• sharing expertise and best practice in education, research and care delivery;

• offering practical support for continuing professional development.

Leadership

Demonstrate and promote leadership in the development and implementation of standards of healthcare

practice in genetics and genomics for the benefit of patients and families, through:

• leading and influencing public policies;

• articulating standards of practice in nursing professional education and clinical care;

• generating and disseminating evidence for high quality nursing practice; maintaining an outward-facing

approach to collaborative working with other relevant public and professional groups.

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PRESIDENT’S FINAL REPORT It has been an honor to serve the members of ISONG; thank you for electing me to serve as president of this wonderful organization. This report highlights a list of activities and accomplishmnets over the past year. Thank you to KME for their work as our headquarters and the work of Beth Kassalen, Linda Mason, and the entire team to ensure the ongoing success of our organization, as well as the

tremendous commitment of time and effort from each member of the ISONG Board of Directors. Encouraging and supporting the extensive work of the committee co-chairs and members was a priority for me in my role. Our Key Accomplishments this Past Year:

▪ Established a new credentialing entity o Nurse Portfolio Credentialing Commission (NPCC) o Board of Directors o Committees o many ongoing activities with plans to go live in spring/summer 2019 including Advanced Clinical

Genomics Nurse (ACGN) and Clinical Genomics Nurse (CGN) ▪ Very active Committees completed important work

o Publications o White papers o Collaborative preconference session o Grant review for awards o New welcome kit for new members o Planning for our World Congress o Revision of position statements o Hosting webinars o and much more!!!

President’s Award The President's Awards were presented to two ISONG members at the 2018 Congress in Orlando, Florida USA for outstanding service, dedication and leadership to:

o Jeanine Santelli o Alice Kerber

Thank you again for the opportunity to serve as the president of ISONG. Respectfully Yours,

Mindy

Mindy Tinkle, PhD, RN, WHNP-BC, FAAN

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COMMITTEE REPORTS

Bylaws Committee Beth Pestka No changes were proposed for the ISONG Bylaws in 2018.

Communications Committee Paule Valery Joseph and Jamesetta A. Newland

Area of Responsibility

To disseminate information to the membership on all aspects of the organization and other relevant issues.

Summary of Activities, Initiatives, Meetings, and/or Events

1. Worked with office staff on e-Update newsletter, redesign of website, and coordination of social media

posts

2. Committee co-chair participated in person or through written report at all assigned Board calls

3. Committee met at Congress 11/3/2017 and had a phone meeting 12/4/2017. Email is predominately

used to communicate – at least biweekly.

4. Worked with Membership Committee to develop Student section on website

Sub-committee Activities

1. Active sub-committee on social media: Paule Joseph, Stacy Hines-Dowell, Lisa Aiello-Laws

2. Worked with a personal contact of Stacy’s to “boost” Facebook posts to hundreds of individuals –

complimentary service

Specific Goals set at start of year and Progress Report on goals

1. Contributed content to e-Updates, either written or acquisitioned

a. Throughout the year, other committees submitted materials for newsletter to co-chairs of

Communications who worked with office staff (Linda Mason) to include in e-Updates

2. Partnered with other committees to meet common goals of Society

a. Each committee member was assigned to a specific committee to work on website structure

and content for consistency

b. Developed a Student section in collaboration with Membership Committee to promote ISONG

to students (particularly doctoral students) and encourage their involvement in the

organization’s activities

c. Regular promotion of webinars from Education Committee

3. Provided input to redesign of website and monitored content

a. Co-chairs frequently reviewed content with office staff for inclusion on website

b. New website was fully launched in the Spring 2018 and received positive feedback from

members

4. Increased social media engagement and ISONG presence beyond ISONG members

a. Regular posts to Facebook and Twitter accounts

b. Significant increase in number of likes and followers but no way to know if these are ISONG

members

c. New publications by ISONG authors were posted to social media

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5. Progress in instituting a Congress app

a. Initial discussion at Congress 2017

b. Stacy will work on it with Linda Mason/staff

Committee Members

Paule V. Joseph National Institutes of Health, NINR

Jamesetta A. Newland New York University Rory Meyers College of Nursing

Carolyn Allen George Washington University Hospital

Stacy Hines-Dowell St. Jude’s Children’s Research Hospital

Caitlin Driesbach University of Virginia Health System

Lisa Aiello-Laws Drexel University

Young Eun Cho National Institutes of Health, NINR

Lacey Wright-Heinsberg University of Pittsburgh (part of year)

Future Goals

1. Monitor and maintain website – include more photos from ISONG events

2. Implement new strategies to engage members in social media and increase ISONG’s broader

presence, e.g., add LinkedIn, continue boosting posts, help members create accounts and practice

posting at Congress

3. Establish content for Members Only section of website – still need to determine what should be

proprietary and not accessible to public

4. Strengthen collaboration with other committees to advance common Society goals – establish

rotating schedule for input for newsletter

5. Increase ISONG’s visibility through outside communication sources

6. Create a “product” – publication on using social media in an organization?

Other comments

The bulk of the work of the Communications Committee is done by office staff. Linda Mason has been invaluable

in creating the new website and maintaining it, as well as production of the newsletter. Posting to social media

has taken more time than anticipated but several members are sharing the work so one person is not overly

burdened. We have 1 to 2 actual meetings (usually phone) per year because it is hard to schedule convenient

time for everyone; but email works well.

Congress Planning Committee Deborah Tamura and Michael Groves

Specific Goals set at start of year and Progress Report on the goals

Overall 2018 Goal: A successful World Congress that fosters communication between educators, researchers

and clinicians, as measured by the final program evaluation.

To achieve this goal:

1. We were very fortunate to recruit a group of talented, hard-working and dedicated committee members

who volunteered to serve on subcommittees; we held monthly full Congress Committee meetings.

2. The Co-chairs took responsibility for identifying the keynote and symposia speakers.

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3. The Abstract Committee did an excellent job of setting a time frame, communicating to the membership

and organized the break-out sessions.

4. Poster Blitz Committee planned the poster blitz presentation.

5. Development Committee found several new sponsors!

6. Grants were received based on the program being planned on attendee feedback.

7. Planned activities and communication to welcome new members, first time attendees and the speakers.

8. Moderator Committee did an excellent job of recruiting moderators for Congress.

9. Raffle Committee solicited contributions for this fun and money-making event.

10. Continuing Education Committee completed the entire CE document and submitted on time for all

members to receive CEU’s for the 2018 program.

Development Committee No chairperson in 2018. Theresa Waders is the Chair for 2019. Any interested ISONG members please contact

[email protected] to serve as Co-Chair.

Education Committee Jennifer E. Sanner Beauchamp, Nicole Osier, and Caitlin Dreisbach


1. Meetings 2018

1. Full 2018 Committee Conference Calls: January 23, March 27, May 22, and August 1, 2018

2. Committee Members participated in additional calls related to webinars/nurse planning

marketing, marketing plan and Facebook posts, and educational products

2. Webinars 2018

1. April: “What Do We Know about Genomics and Alzheimer’s Disease” by Julie Eggert

2. July: “Identifying and Treating Monogenic Diabetes” by Maggie Shepherd (UK Presenter)

3. November: “Direct to Consumer Genetic Testing” by Nicole Osier (23andMe sponsorship)

3. Initiatives: NP pre-conference educational product and checklist for webinar marketing/linear action

plan


1. Offer 3 webinars from January 2018 to December 2018

a. 2 webinars completed (see above), including our first international webinar

b. 1 webinar in active development for November 2018 (see above) with sponsorship secured from

23andMe

c. Continue to identify Congress speakers from 2018 to develop webinars; this has been done

previously with success. Education Committee members attending Congress this year will be

observing talks and reaching out to speakers for potential webinar development OR ideas for

the development of educational products, beyond webinars, for 2019.

d. Successfully on-boarded of new Nurse Planners and committee membership engagement on

marketing efforts

e. Per HQ request, we limited our webinars to 3 for 2018 with plans to explore expanding

educational products beyond the webinar platform (see goal 4 below

mailto:[email protected]

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2. Secure sponsors for at least 2 webinars

a. Sponsorship secured for November 2018 webinar by our committee co-chair, Nicole Osier.

Sponsorship from 23andMe.

b. Continued to reach out to potential sponsors earlier because budgetary decisions are often

made up to a year in advance; this will be facilitated by long-term webinar or educational

product planning for next year.

3. Finalize a formal marketing and business plan for webinars

a. Committee sought out ISONG member Lori Vick to help lead this initiative. Jennifer Dungan

created a historical document to document past marketing efforts, along with noted challenges

and successes. Lori Vick created a working checklist for Webinar Marketing as a linear action

plan. This checklist will assist committee members in effectively/efficiently marketing not only

future webinars but educational products as well. Development of a formal business plan is an

item to consider for 2019.

4. Expand our educational ‘products’ beyond webinar platform

a. Nicole Osier lead the subcommittee to explore new educational products beyond the webinar

platform, including a NP pre-conference.

5. Update website for 2017-2018

a. Maura McCall is leading the website subcommittee

b. A need for committee photographs was identified and photos were submitted and posted

c. A request for videos will be requested with plans to create video content at the 2018 Congress

d. Educational Committee information was updated. Committee contributed to ISONG newsletter

content and webinar information was provided for the website.

Budget and Finances

$1000 Revenue as of 10/11/18 (includes $920 plus an estimated $80 from additional viewed webinars)

- $1000 Continuing Education Expenses (Pittsburgh Certificate costs = $1000 as of 10/11/18)

= $0 Estimated net revenue

Please note:

• November 2018 webinar will impact final revenue numbers

• Estimated expenses provided by Linda Mason as of 10/11/18

Committee Members

Thank you to the ISONG members who volunteered their time to the Education Committee in 2018. Additional

recognition goes out to Nicole Osier who created a standard email template to welcome new committee

members that includes an introduction to the committee’s goals.

Ethics and Public Policy Committee Laura Beamer


The Ethics & Public Policy Committee evaluates scientific and political changes which require a response by the

Society. They recommend and establish criteria with approval by the Board of Directors for such evaluation

which reflects the Vision, Mission, and goals of the Society. The Ethical and Public Policy Committee may not

provide verbal or written opinions on political or scientific issues without the approval of the Board of Directors.

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1. We met on November 3, 2017 at the ISONG Congress and held a teleconference so that every EPP

Committee member had a voice. Desktop sharing had limited success, but phone conferencing worked

well.

2. We met on February 4, 2018 and reviewed our progress toward revising the positions statements,

publishing the manuscript, and revision of the white paper on GINA/ACA.

3. We met on September 25, 2018 and reviewed the position statement on informed consent. We also

elected co-chairs for 2018-2020.

4. We plan to meet October 26, 2018 at the ISONG Congress.

Specific Goals set at start of Year and Progress on Goals

1. Goals

a. Goal 1 - Continue revision of position statements

b. Goal 2 - Have manuscript How American Nurses Association Code of Ethics informs

genetic/genomic nursing accepted for publication

c. Goal 3 - Revise ISONG White Paper: The Genetic Information Nondiscrimination Act of 2008 and

Discordance with the Patient Protection and Affordable Care Act of 2010

d. Goal 4 Revise Policy & Procedure for Writing Position Statements & Issue Papers

2. Progress

a. Goal 1 - 2 position statements were revised and approved.

b. Goal 2 - Manuscript on ANA Code of Ethics was published by Nursing Ethics on April 29, 2018.

c. Goal 3 - White paper on GINA/ACA was revised and posted to the ISONG website on May 2018.

d. Goal 4 - Revise P & P on writing position statements & white papers, will go to Board in

December 2018

Members of the EPP Committee – thank you!

Abo Rabia, Rasmiya Clalit public health services

Aiello, Lisa Drexel University

Anderson, Jennifer Invision Sally Jobe

Arabadjian, Milla NYU School of Medicine

Beamer, Laura Northern Illinois University

Black Monsen, Rita Nursing Education Consultant

Blair, Lisa University of Virginia

Connors, Laurie Vanderbilt University

Daniels, Chelena University of Iowa Hospitals

Darmofal, Leslie Minnesota State University

Dickey, Susan B. Temple University

Dreisbach, Caitlin University of Virginia

Dumo, Anndra University of Eastern Finland

Earl, Dawn Seattle Children’s

Giarelli, Ellen Drexel University

Goldsmith, Ella HMO

Graves, Letitia University of Pittsburgh

Groves, Michael Shepherd University

Hersperger, Cheryl Worcester State University

Hickey, Kathleen Columbia University

Jaja, Cheedy University of South Carolina

Joseph, Paule Div. of Intramural Research

NINR, NIH, DHHS

Kracun, Mary National University

Markum, Catherine CHI Memorial Cancer Risk &

Survivorship Center

Menzies, Victoria Virginia Commonwealth Univ.

Molle, Elizabeth Catholic University of America

Musser, Denise University of Minnesota

Muto, Lisa Edwards Comprehensive

Cancer Center

Nastasi, Gail Orange Regional Medical Ctr

Ouma, Annastasia St. Jude Children's Hospital

Paljevic, Esma Pace University

Pellazgu, Eleni New York University

Reed, Cathy Boston College

Steck, Mary Beth Clemson University

Tluczek, Audrey University of Wisconsin

Turner, Martha American Nurses Association

Twal, Marie Indiana University of Penn.

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Twomey, John Hasbro Children's Hospital

Voights, Kaitlin University of Kentucky

Wadas, Theresa University of Alabama

Wangi, Karolus Tarumanagara Institute of

Health Science

Willis, Valerie University of San Diego

Xavier, Rose Mary University of Pennsylvania

Zahn, Karen Maryville University

Future Goals

1. Goal 1 - Continue revision of position statements

2. Goal 2 - Write new position statement on Workplace Wellness Programs and Discrimination via

Disclosure of Genetic Information

3. Goal 3 - Write a new position statement on gene editing, if time permits

Global Membership Committee Susan Fernbach and Lacey Wright Heinsberg


The role of the Global Membership Committee is to address issues related to increasing membership,

disseminating information about members as appropriate, and enhancing the experience of members by:

1. Publicizing the organization to attract new members

2. Facilitating potential members in joining the organization

3. Acting to honor and disseminate information about the achievements of members

4. Addressing issues related to non-renewal of membership to maximize retention of members


1. Committee met bi-monthly throughout the year via GoTo Meeting and worked remotely as task forces

on committee initiatives in support of our goals. Formal meeting dates:

a. November 3, 2017 (World Congress)

b. November 30, 2017

c. December 5, 2017 (via email)

d. February 1, 2018

e. April 16, 2018

f. June 18, 2018

g. August 29, 2018 (via email)

h. October 26, 2018 (World Congress)

2. A “listserv” for ISONG outreach continues to be compiled from publicly available contacts, including

Deans of Schools of Nursing, leaders of nursing organizations, and societies internationally

3. Global initiatives were prioritized (see details below)

4. ‘Welcome Kit’ for new members was developed (see details below)

5. Special interest groups are being explored (see details below)

6. Member outreach continues

a. Thank you notes sent out to ISONG members who recruit new members

b. Emails sent to new members interested in our committee

c. Developed invitation to annual ISONG Congress

d. Feedback given on the membership page of the ISONG website

e. Discussing the development of an education ‘Tool Kit’

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Subcommittee - Summary of Activities, Initiatives, Meetings, and/or Events

1. Global initiatives: A major area of interest within our committee is prioritizing global initiatives. ISONG

is uniquely challenged because we are such a small, yet international organization. To increase global

awareness of our organization, we have translated the ISONG membership brochure into Japanese and

are working on a translation to Korean. We are seeking assistance translating the brochure to Mandarin,

Cantonese, and we welcome suggestions from the membership. This year, we would like to highlight our

committee members Masakazu Nishigaki and Hyangkyu Lee for their translation efforts.

2. Welcome kit: One of our initiatives this year included the development of a welcome kit. This task force

was led by incoming Co-Chair Sarah Dewell. As part of the welcome kit, we updated the welcome letter

that is sent out to new members, created a certificate of membership, and sent out the most recent e-

update and a flyer for Congress.

3. Special Interest Groups: This task force was led by Sivia Barnoy and Bobbi Laing. Following Congress last

year, we queried members for interest in Special Interest Groups (SIGs). The top 2 candidates included

an oncology SIG and an education SIG. As a trial, we are planning to move forward with implementing an

oncology SIG because that topic received the most interest. We hope to create something that will be

sustained by the membership and not necessarily an individual committee. We are seeking volunteers

for SIG input, leadership, and resources. Please contact the Global Membership Committee if you are

interested in helping.


1. Increase membership by 5%.

a. Prioritize global initiatives

i. Translate ISONG brochure into multiple languages

ii. Encourage regional ambassadors to market ISONG

b. Encourage use of slide deck to advertise ISONG and recruit new members

c. Actively target student recruits by promoting the value of student memberships

d. Collaborate with the Communications Committee to promote social media activities

e. Progress on Goal: Membership was maintained, but not increased

i. As of 10/10/2017: 347 active members

ii. As of 9/7/2018: 346 active members (with an additional 11 membership applications

pending)

2. Effectively retain established members of ISONG (i.e. 100% renewal rate)

a. Track membership trends throughout the year

b. Reach out to members who are due for renewal

c. Increase promotion of existing member benefits

d. Progress on Goal: Membership levels are steady from a year ago with only 2 members currently

lapsed

3. Improve member engagement

a. Explore special interest groups

b. Provide feedback for modification of the membership section of the website

c. Develop a welcome kit for new members

d. Promote international collaborative research

e. Progress on Goal: Member engagement is difficult to measure; however, the committee has

received reports of social media involvement, excitement about the 2018 Congress, and positive

feedback on committee initiatives and especially the translated international brochures

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Budget/Financial Issues

No budget issues to report. A mailing list continues to be compiled by committee as purchasing a mailing list

was cost prohibitive

Committee Members

We are proud to announce we have 16 members representing 12 countries. Global Membership Committee

Members for the 2017 – 2018 fiscal year include:

Susan Fernbach (Co-Chair) Baylor College of Medicine

Lacey Wright Heinsberg (Co-Chair) University of Pittsburgh

Sarah Dewell (Incoming Co-Chair) University of Calgary

Sivia Barnoy Tel-Aviv University

Anndra Dumo University of Eastern Finland

Andrew Dwyer Boston College

Katie Edwards Clemson University

Juana Mercedes Valverde Univsersidad Autonoma de Nuevo Leon

Simbarashe Kamba Crown Agents Zimbabwe

Bobbi Laing University of Auckland

Anecita Gigi Lim University of Auckland

Hyangkyu Lee Yonsei University

Jane Maguire University of Technology Sydney

Masakazu Nishigaki Kyoto University

Erika Maria Monteiro Santos Hospital Sirio-Libanes

Karolus Yosef Woitila Wangi Tarumanagara Institute of Health Science

Future Goals

1. Increase membership and retention of members over the next year

2. Increase engagement/participation on Facebook and social media

3. Identify additional strategies to attract and retain members

4. Increase international presence

Other comments

We, as a committee, appreciate the opportunity to contribute to this organization. We truly believe in the

mission of ISONG and are honored to contribute to the goals and vision of ISONG. We want to highlight Linda

Mason and thank her for her kindness and all the excellent work she does for our committee and organization.

Nominations & Awards Committee Beth Pestka


The Nominations Committee solicited nominees for the open positions for the ISONG Board of Directors during

the 2018-2019 year. Open positions included: President-elect, Treasurer, Member-at-Large, and Student

Representative. The Call for Nominations from the previous year was reviewed in April and found to require no

changes. The Call was sent to the full ISONG membership on April 26, 2018 with a deadline for nominations of

May 25, 2018. Vetting of candidates by the committee of Beth Pestka (Chair), Mindy Tinkle, and Susan Wesmiller

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was completed by June 5, 2018 at which time the slate of candidates was presented to the ISONG Board of

Directors. A ballot of the candidates, along with their personal statements of qualifications and goals, was sent

to the full ISONG membership for voting from June 8, 2018 to July 10, 2018. All candidates were notified of the

outcome of the election via e-mail by July 13, 2018 and announcement of the newly elected Board of Director

members was sent to the full ISONG membership on July 17, 2018.

Elected Candidates:

President: Dennis Cheek

Treasurer: Lisa Aeillo

Member at Large: Masakazu Nishigaki

Student Representative: Mallory Perry

The Nominations Committee also serves to manage the ISONG Founders Awards process. The committee

solicited nominees for awards in Practice, Education and Research. The call was reviewed in April and no

changes were made. The Call was sent to the full ISONG membership on May 30, 2018 with nominations closing

on June 29, 2018. The following members were nominated by their peers for each award:

Practice: Laurie Connors and Phyllis Everett

Education: Laurie Connors, Susan Dickey, Susan Montgomery, Jackie Taylor, and

Linda Ward

Research: Sivia Barnoy and Jessica Gill

The committee members used a scoring form based on the identified criteria for the award, developed by Beth

Pestka, to determine the winner of each award. This form is on file at ISONG headquarters if there is interest in

using it in future years. Announcement of the recipient of each award will be made at the annual Congress in

Orlando, Florida October 26-28, 2018.

Professional Practice Committee Tammy McKamie and Sue Montgomery


1. Mentoring Initiative

2. Certification Issue

3. ISONG partnership with American Society of Human Genetics (ASHG)

4. Provide education/webinars to outside organizations and nursing students

5. Began PPC monthly phone/webinar meetings

Highlights / Accomplishments

1. Mentoring - Responses to total of 31 inquiries since inception

2. Collaboration w/other committees (Education, Membership) to highlight member accomplishments,

provide webinar ideas, etc. with ASHG

3. Credentialing – Input on transition, participation on planning committee

4. Coordination of Vendors’ meeting to educate about ISONG and explore collaborative efforts

5. Communication - Monthly PPC phone meetings – 7 total in past year

6. Outreach – many committee members have done presentations, including ISONG in their slides, also

numerous publications from members

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Research Committee Allison Vorderstrasse & Ansley Stanfill


Overall responsibilities are to facilitate the research activities of ISONG members which include:

1. Raising awareness of the role of research within ISONG's core business

2. Alerting members to research opportunities (funding, collaboration among members)

3. Administering the ISONG annual grant award through an equitable and efficient process.

4. Disseminating news of research to key stakeholders (members, patients, other professional, funders)

This year our focused areas of responsibility have been:

1. Research grant application and review process, reviews, recommendations for funding and follow-up on

awarded grant completion

2. Participation in research activities of ISONG such as determining the best ways to facilitate collaboration

and networking among members, dissemination of nursing genomic research


Co-chairs met approximately monthly by phone and email communication to plan for grant review and any

other activities. Discussion was focused on increasing information for members about grant application process,

engaging the committee members in networking and potential research dissemination. Meetings were held for

purposes of the following activities and included those from the Research Committee in general or a subgroup

who volunteered for this grant review cycle:

1. April 2018 – General Research Committee meeting to assess level of participation, engagement, and

networking that the committee can participate in and would like to have moving forward. Discussed the

grant cycle and it was suggested that we hold a general Q & A webinar about the grant application

process for the membership. Discussed potential formats for getting together online as a group regularly

for networking or potential collaborations.

2. June 2018 – Held first general Q & A info session via webinar for the membership re: grant process. Well

attended and good questions raised and addressed.

3. July 2018 – Call for reviewers for 2018 grant cycle from among committee members

4. Aug 2018 – Subgroup reviewed grant applications (10 received)

5. Sept 2018 - Review meeting for 2018 ISONG grants. 10 grant applications were reviewed by committee.

Discussion and committee voting resulted in 2 awarded grants as listed in section C below.

Grants Awarded in 2018

1. Mallory Perry, Predoctoral student at University of Connecticut: Assessing the Management of Pediatric

Postsurgical Pain (AMP3) with Genetics

2. Katherine Durham Maki, PhD student at University of Illinois, Chicago: Cardiovascular and Gut

Microbiome Response to Sleep Fragmentation in Rats


Increase Research Committee activity, productivity, and visibility through the following potential means:

1. Networking and researcher postings on new ONSEN site

2. Follow up regarding committee discussion at last congress regarding networking and other

opportunities we are not currently actively using in our committee. An example may be research

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collaborations and networking session at subsequent ISONG meetings. Alternatively, we could try web

conference calls for peer review and networking.

We made some progress toward our overarching goals by increasing information and discussion available to all

ISONG members about the grant application process. We did hold committee meeting to discuss needs and

initiatives to support members in their research, networking, and dissemination. We did hold off a little on

moving forward with specific initiatives because of the following: needs survey was being sent to all members

which could guide our activities moving forward; ONSEN site is now up and will be further beta tested and

discussed at ISONG Congress which could be used by committee members as additional networking and sharing

tool rather than ISONG developing another mode of facilitating that; and we are still looking for future

partnerships with journals/editors for genomics nursing research special issues or columns that would facilitate

dissemination.


ISONG received 2 sponsorships for research grants. Sponsorships and funding are an annual concern because

they allow ISONG to support investigators to the highest degree possible. The Research Committee members

are willing to actively help find sponsorship of the grants from their home institutions or other entities and as a

committee we could do more in the future to encourage sponsorships.

Committee Members – thank you to the many committee members for their work to make the Research

Committee a success!

Tara Albrecht

Pilar Amaya-Rey

Cindy Anderson

Edwin Aroke

Jan R. Atwood

Eric Barbato

Christina Bricker

Mirella Brooks

Julie Cakici

Sharon Casavant

Katherine Chadwell

Pei-Ying Chuang

SeonYoon Chung

Yvette Conley

Andrew Cordek

Efrat Dagan

Jane Dean

Kristin Dickinson

Crystal Dodson

Janice Dorman

Nancy Downing

Caitlin Dreisbach

Anndra Dumo

Jennifer Dungan

Ann M. Dylis

Sylvia S. Estrada

Ana Lilia Fletes Rayas

Elena Flowers

Sandra Founds

Jane Garvin

Stephanie Gilbertson-

White

Marilyn Hammer

Wendy Henderson

Kathleen Hickey

Deborah Himes

Barbara Hoerst

Christopher Imes

Rosario Jaime-Lara

Vivian Ocampo

Carolyn Jones

Paule Joseph

Amanda King

Julie Kittelsrud

Gwen Latendresse

Grace Lawrence

Dawn Lea

Phyllis Mandizvidza

Catherine Marcum

Lea Ann Matura

Maura McCall

Ibis Menendez

Victoria Menzies

Elizabeth Molle

Scott Moore

Julie Moyer

Gia Mudd

Rita Musanti

Emmah Ncube

Rose Nealis

Stephanie Nikbakht

Alexandra Nowak

Nicole Osier

Annastasia Ouma

So Hyun Park

Mary Quinn Griffin

Karin Reuter-Rice

Kathryn Robinson

Jeanne Robison

Mary Ropka

Karen Saban

Hudson Santos

Mandy Schmella

Memnum Seven

Komal Singh

Elizabeth Skrovanek

Carrie Snyder

Lisa Sonzogni

Ansley Stanfill

Angela Starkweather

Melinda Tinkle

Reba Umberger

Marcia Van Riper

Lori Vick

Allison Vorderstrasse

Monica Wagner

Karolus Yosef Wangi

Barbara Weinstein

Susan Wesmiller

Karen Whitt

Karen Wickersham

Janet K. Williams

Michelle Wright

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Proposals for the ISONG Board

Consider partnering with journals/editors on dissemination of nursing genomic research on a regular basis

(regular issue, special issue, or regular section). We discussed this at a board meeting and the board was

receptive. We are trying to follow through on support from editor(s).

Future Goals

These are suggestions but subject to change based on needs survey findings of the membership and research

committee engagement.

1. Continue to increase transparency of grant application and review process through Q & A sessions;

continue review procedures as they have worked well and been well received for the last two years.

2. Create sustainable grant program through increased sponsorships for awards

3. Consider developing research interest groups

4. Promote dissemination of nursing genomics research

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BOARD REPORTS

Treasurer Report Fiscal Year 2018

Rebecca Kronk

This ISONG Treasurer’s Report covers January 1, 2018 through December 31, 2018. On December

31, 2018, ISONG’s balance sheet reflected assets of $105,416. This was an increase in net assets

by $47,103 from net assets recorded at the end of 2017.

Total income from ISONG in 2018 was $185,384. Major sources of income for ISONG were:

1. Conference Registrations $88,460

2. Membership Dues $48,905

3. Sponsors/Exhibitors $25,950

4. Nursing Research Grants $5,000

Total operating expenses for ISONG in 2018 were $138,328. Major expenses for ISONG operations were:

1. Conference $54,050

2. Management Company $63,076

ISONG ended Fiscal Year 2017 with a net annual profit of $47,055.

Budget vs Actual:

For Total Income we budgeted $165, 805; actual Income was $185,384 therefore we achieved 111% of

budgeted income.

For Total Expense we budgeted $160,108; actual Expense was $138,328 therefore we spent 86.4% of budgeted

expense.

Secretary Report Jennifer Dungan

Summary of Activities, Initiatives, Meetings and/or Events:

1. Attended majority of Board meetings. Prepared minutes and eUpdates for each meeting.

2. Served as liaison to Research Committee

3. Served as member of the Education Committee and advocated for webinar marketing

and piloting of novel education offerings

4. Served as ISONG representative to the NINR/NHGRI/NCI Genome Research Consortium

Future goals:

1. Continue to serve as Secretary to the Board for year 2 of my term

2. Transition liaison role to the Education Committee, providing information and guidance for new

educational platform initiatives.

3. Continue to foster ISONG’s involvement in the ONSEN resource

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Student Representative Report Caitlin Dreisbach


The role of the student representative is to provide a student perspective to the Board of

Directors. As the student representative position grows in strength, the inclusion of more

opportunities directly for students and post-doctoral researchers becomes even more essential.

The student representative is responsible for advocating on behalf of students and to reliably

attend the Board of Director’s meetings each month.


My commitment to the student representative role has included several initiatives to Increase the external

awareness of student membership for ISONG, adapt historic policies and procedures relating to the inclusion of

students, and to expand scholarship opportunities for students to attend Congress. These goals are highlighted

below. Succession planning will occur at the upcoming 2018 ISONG meeting.

Specific Goals and Progress set at start of Year

1. Increase external awareness of student membership for ISONG

a. Changed wording on new ISONG website to include verbiage pertaining to students

b. Added a student membership tab on website; working with Membership Committee to expand

future highlights in this area.

c. Reached out to other organizations (e.g. ASHG) to explore how students engage and operate

2. Adapt historic policies and procedures relating to the inclusion of students

a. Contributed to revisions to the scholarship form by both reducing the number of years a

member needed to be active in order to be eligible and securing a minimum of one allocation

for a student member

3. Expand scholarship opportunities for students to attend Congress

a. Attempt to secure additional funding specifically for students

b. Explore mechanisms for ISONG to save money and divert additional funds to support student

attendance at Congress


The student representative does not earn or expend income throughout the fiscal year. Future student

representatives could consider alternative sponsorship methods specifically geared toward student needs.

Proposals for the ISONG Board

I have no further proposals for the ISONG Board of Directors. I intend to meet and support our new student

representative as she continues the further integration of students in ISONG.

Future Goals

1. increase student membership

2. offer more scholarship opportunities to engage students at the 2019 Congress.

Other comments: I have no other comments for the Board. Thank you for the opportunity to serve as the

student representative for the year!

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EXECUTIVE DIRECTOR’S REPORT I am honored to be working with ISONG and serving as its Executive Director. The role of

Executive Director (and KME) is to support everyone in ISONG as a consistent person: the Board,

the committees, the membership, sponsors and strategic partners. We serve as those constants,

moving projects forward and providing executive input to the Board.

As the Executive Director for ISONG, I worked with Mindy Tinkle, ISONG President 2017-2018, to

help ISONG grow while maintaining focus on its mission and goals. Thank you Mindy, for your commitment to

governance and appreciation of the ISONG members’ needs.

We have seen a substantial increase in interest in ISONG and its role as the genetics leader this year. Many

individuals and organizations have reached out to ISONG as the source for genetic information. This growth is

meaningful development of the organization and helps the to organization flourish.

ISONG initiated a call for action and asked for volunteers to collaborate on a new genetics certification by

portfolio and evaluating options for providing expert level recognition to our members. I worked with a core

volunteer group to create a separate entity: the Nurse Portfolio Credentialing Commission (NPCC.) This has

been created to address this need for genetic certification. Monthly updates about their important work and

progress are posted on the ISONG webpage.

My role was to work with them on creation of a name, legal documents for incorporation, obtaining a website

and other items to move forward. Additionally, this gave me us the opportunity to increase ISONG’s visibility

on social media. We posted a video interview of the task force with their expressions on why the certification is

important for nurses. The certification video had hundreds of views.

Membership has increased to about around 352 active participants with some additional members due to renew

this month. Each committee has prepared its own annual report and the projects and tasks they’ve

accomplished are a testament to their diligent and non-stop hard work throughout the year.

One of the primary responsibilities as Executive Director is fiscal management. Fiscal management includes

developing an overall operational budget as well as creating budgets for each major sector of ISONG such as the

annual conference, webinars, publications, and other meetings. Effective financial oversight is achieved through

close collaboration between the Executive Director, the Board, the Treasurer, the accountants, and Linda

Mason, ISONG’s team leader at headquarters.

ISONG financials reported a healthy growth this year. Financial reports were sent electronically to all members

in October and Becky Kronk, Treasurer, reported at the annual Congress business meeting. Please see the

report from the Treasurer that ISONG made a small profit this year. We hope this will allow for additional

projects and investments back into the association and its members.

ISONG Headquarters were able to secure a record number of sponsorship dollars and grants for the 2018 ISONG

Congress. We gratefully acknowledge the financial support of our sponsors and exhibitors and encourage

continued collaboration between our members and these universities and companies.

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Beth Pestka, along with a few members, presented with the American Society of Human Genetics (ASHG) to a

psych nursing group providing exposure for ISONG. We are hoping to explore more this year.

After feedback from the public, Congress evaluations and the members assessment, it was determined that the

ISONG Education Committee should develop and offer pre-conference workshops on genetics prior to the

Annual Congress. This could potentially be used as a template to offer more genetics education, giving genetics

a wider audience. Also, these programs will assist those who are looking to become credentialed.

Again, the student rep position proved to be a welcomed addition to the board. Cait Dreisbach successfully

completed her term as Student Representative. She was instrumental in creating and providing more

information to students on the benefits of ISONG membership.

Enhanced online communications, including a new e update format, was introduced this year with great reviews

by the members. Additionally, we worked to increase articles and highlight members’ contributions, with

increased efforts to highlight those members from outside of the US.

A member’s needs assessment was sent out this year and I will work with the members at large and the board to

address the needs of the members. This coming year we are working to create educational products and to

promote ISONG as “the” resource for genetics nursing.

In summary, my goal as Executive Director is to make sure that ISONG, its Board, its volunteer leaders, and its

members achieve their goals. I work to ensure that ISONG provides our members with the resources that

elevate their expertise in their field, to offer networking and support opportunities as well as career and

educational growth. ISONG members are wonderful and thank you for your participation and time put forth on

the mission and vision of ISONG.

Sincerely,

Beth A. Kassalen, MBA

Documents

2016 Annual report - ISONG Annual Report ISONG.pdf3. Initiatives: NP pre-conference educational product and checklist for webinar marketing/linear action plan Specific Goals set at