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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. Email: email@example.com
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. Email: firstname.lastname@example.org.
Tom Cox is a native of Roanoke, Virginia and currently lives in North Carolina. Tom holds the distinction of being the first male member of the IWSA Board of Directors. Tom is married to
Kelli Cox and they have two grown children: Jacob and Jenna (WAGR syndrome). The Coxes hosted WAGR Weekend in Pennsylvania in 2006 and again in 2016 in Asheville, North Carolina.
Tom holds a BA in Speech Communication from the University of South Carolina and his Master of Divinity at Reformed Theological Seminary in Florida, where he did also did his doctoral work. He is a veteran of campus ministry and has served as pastor on staff of churches in Alabama, Pennsylvania, and North Carolina.
Linda joined the IWSA Board of Directors in 2019, and also serves as the IWSA's European Representative. For the past several years, Linda has served the IWSA as a volunteer leader, focused primarily on WAGR syndrome awareness in Europe. Linda and her husband Godwin are parents to Dylan, who was born and diagnosed with WAGR syndrome when the family was living in Ghana. They later moved back to Belgium, Linda’s home country, after Dylan’s diagnosis to pursue better medical care.
Linda serves as the IWSA’s first Board member living outside the US. For nine years Linda worked as a teacher, and taught internationally for seven. She has lived in Kazakhstan, China, and Ghana. She is currently working for the Red Cross at a shelter for refugees.
“My interest goes to spreading awareness, connecting families, and encouraging medical staff to learn about WAGR syndrome,” explains Linda. “America and Japan have taken the lead on advocacy related to WAGR and I would like to build a network in Europe to do the same.”
“One in a million means it’s possible,” says Linda. “Those ‘ones’ need to count.”
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, Rhonda became the first member of the IWSA Board Emeritus. Rhonda continues to serve the IWSA as Educational Consultant as well.
Rhonda received her BS and Master of Arts in Elementary Education from the University of New Mexico. She currently teaches driver’s education and teaches parttime at her local high school. Her son, Alex, has WAGR syndrome and attends a special services college program in New Mexico. 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 email@example.com