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The Board of Directors of the IWSA governs the organization's strategic and organizational management. The Board is committed to furthering the IWSA's mission to promote awareness, stimulate research, and support families affected by WAGR syndrome.
John is a physical therapist, manages two outpatient rehab facilities, and is a director of an orthopedic physical therapy residency program. He has served as an IWSA Board member, including as Secretary, since 2016 and is a member of the IWSA's Research and Medical Advocacy Committee. John is a co-author of Results from the WAGR Syndrome Patient Registry: Chararacterization of WAGR Spectrum and Recommendations for Care Management. John and his family hosted WAGR Weekend in 2020 and 2021, which were held virtually due to the pandemic. John lives near Philadelphia, Pennsylvania with his wife Beth, and daughters, Miranda (WAGR) and Juliet.
Nikki Hoffman lives in Pennsylvania with her husband and daughter. Nikki’s nephew has WAGR syndrome. She is a Certified Public Accountant (CPA) and has served the IWSA Board as Treasurer since 2011.
Kelly Trout, BSN, RN is a registered nurse. She is the Director of Research and Medical Advocacy for the IWSA, serves as Secretary of the Board of Directors, and is Program Manager of the IWSA WAGR Syndrome Patient Registry. She has been a Merit Reviewer for the Patient Centered-Outcomes Research Institute (PCORI), was the Principal Investigator for the PCORI 2018 Conference on Wilms Tumor in WAGR Syndrome, and is currently serving as a PCORI Ambassador. Kelly is a member of the Board of Directors of Aniridia North America (ANA), and serves as Chair of ANA's Strategic Planning and Policy Committee. She is the author of numerous articles on WAGR syndrome, and has presented at national and international conferences on WAGR syndrome and rare disorders. Kelly lives with her family in San Antonio, Texas. Her daughter Caroline has WAGR syndrome.
Linda joined the IWSA Board of Directors in 2019, and also serves as the IWSA's first Board member living outside the United States. She also became the IWSA's European Representative. Linda is working for Red Cross Belgium in a management position at a shelter for refugees.
Her interest goes to spreading awareness, networking with European organizations, and making sure that families all over the world feel connected and have access to WAGR-related infromation in their mother languages. She also enjoys working on projects like WAGR Awareness Day, and other awareness and fundraising events.
Linda lives in Belgium with her partner Bjorn and son Dylan (WAGR). They are hosts for the first official European WAGR Weekend conference held in Belgium in July 2023.
“One in a million means it’s possible,” says Linda. “Those ‘ones’ need to count.”
Andrea Harris was elected to the IWSA Board of Directors in the spring of 2023. Andrea
and her husband Josh live in Wisconsin and are parents to son Joshua, who has WAGR
syndrome. She has been an active member of the IWSA community since Joshua’s
Andrea has a BA in Management and Communication. Prior to launching a digital
marketing agency in 2021, Andrea spent 25 years in the corporate arena holding
diverse positions where she was a key resource to troubleshoot issues, provide
leadership, and improve processes. Her most compelling takeaway is that forging
relationships and connections are not optional, they are essential not only in business,
but in all facets of life. In addition, she has a tough time accepting it "can't be done"
because where there is a will there is always a way.
Andrea is extremely passionate about the IWSA and all it encompasses; consequently,
she is excited to connect with IWSA families and provide support. Furthermore, she will
continue to persevere with “where there is a will, there is always a way.”
Rhonda Sena is a co-founding member and former officer and board member of the
IWSA. After many years of serving on the Board of Directors and as the IWSA
Educational Consultant, Rhonda became the first member of the IWSA Board Emeritus.
Rhonda received both her Bachelor's degree and Master's degree in Education from the
University of New Mexico and is licensed to teach Pre-K through 12th grade. She
currently teaches driver’s education and teaches part-time at a local charter high school.
Her son, Alex, has WAGR syndrome and works part time at a local golf course. Rhonda
and her husband have two other children, and two grandchildren.
Shari became the IWSA's first paid staff in 2017 as the organization's part-time Executive Director. In this role, Shari leads the IWSA's day-to-day activites and coordinates programs and initiatives executed by volunteers around the world. She has served the IWSA since 2006 when her daughter Amy Marshall (1995-2015) was diagnosed with WAGR syndrome. Shari has worked with the IWSA in a number of roles including as a volunteer, board member, and Board Chairperson and Co-Chair. Shari's family has hosted three WAGR Weekends in Maryland. Meeting and supporting IWSA families around the world and furthering Wilms tumor research are among her passions. Shari is a co-author of Results from the WAGR Syndrome Patient Registry: Characterization of WAGR Spectrum and Recommendations for Care Management. She served as Administrator for the PCORI 2018 Conference on Wilms Tumor in WAGR Syndrome. Shari is a co-founder and currently serves as Board Secretary of Aniridia North America, a nonprofit organization focused on serving stakeholders in the aniridia community.
The IWSA has an established "flow" of how activities and initiatives are managed. The all-volunteer Board of Directors develops the organization's Strategic Plan and provides support and oversight to the IWSA's only paid staff, the Executive Director. Each Board member, the Board Chair, and the Executive Director serve on committees designed to address issues in specific areas and make recommendations to the Board for planning and decision making. The IWSA's part-time Executive Director is responsible for overseeing and managing day-to-day operations as well as coordination and management of the current five teams. These teams include International Outreach led by Linda van de Sande, Board member and European Representative; Research and Medical Advocacy, and Medical and Scientific Advisory Board, both led by Kelly Trout, Board Secretary; WAGR Weekend Events, led by Tom Cox, Board member; and Family Engagement & Support, currently led by Shari Krantz, Executive Director. Each of these teams are also made up of volunteers who help to further the IWSA mission.
Inquiries about serving on a team or to learn about becoming a Board member or volunteer, contact Board Chair John Morris at firstname.lastname@example.org