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Kelly Trout, BSN, RN is a registered nurse. She is the Director of Research and Medical Advocacy for the IWSA, and is Program Manager of the IWSA WAGR Syndrome Patient Registry. She has served as a Merit Reviewer for PCORI, the Patient Centered-Outcomes Research Institute, 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 Global Genes RARE Foundation Alliance Leadership Council. 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.
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.
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.
Jenny Gunckle joined the IWSA Board of Directors in 2017 and is also a member of the IWSA Patient Registry team. Jenny graduated from the University of Michigan with a degree in mathematics and works as an actuary specializing in retirement plans.
Jenny lives in Michigan with her husband Adam, and children Evan and Emma (WAGR syndrome). She has a passion for furthering research specific to WAGR syndrome and for encouraging participation in the IWSA registry. After Emma was treated for Wilms tumor, Jenny and her family founded the nonprofit family foundation, WAGR Warriors.
John Morris is father to two girls, Miranda (WAGR syndrome) and Juliet, and is married to Beth Morris. The Morris family lives in suburban Philadelphia, Pennsylvania. John graduated from Ithaca College with an MS in Physical Therapy in 2002. He is a clinical manager and orthopedic residency director for MossRehab in Philadelphia (USA).
His work with the IWSA is focused on advocacy, education, and medical support. John serves as IWSA Board Secretary and is also a member of the Research and Medical Advocacy Group. John and his wife Beth, created Miranda’s Mission, a 501(c)(3) organization, in honor of their daughter.
Linda joined the IWSA Board of Directors in 2019. 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 hosted three WAGR Weekends in Maryland. Meeting and supporting IWSA families around the world and furthering Wilms tumor research are among her passions related to WAGR syndrome.