Wilson Disease Association Board of Directors

Executive Committee

Jean Perog

President
Merritt, B.C. Canada
Email: jean.perog@wilsonsdisease.org

I enjoyed a fulfilling career for over 10 years in public practice as a CPA,CA and over 20 years with Interior Health Authority in various management positions in Finance, Information Technology and Primary Health Care.

I became a board member of WDA as both my brother and I have Wilson Disease and I wanted to get involved to help ensure no one need suffer from Wilson Disease.

On retirement, I was determined to continue service to my community, using the skills and knowledge that served me so well in my career. I currently volunteer with the Merritt & District Hospice Society, Municipal Pension Retirees Association (MPRA) and Community Futures Nicola Valle (CFNV) and the Nicola Valley Health Care Endowment Foundation.

When I am not volunteering, my passion is camping with my wonderful husband and freshwater fishing.

Rachel Albert

Vice President of Scientific Affairs
Middlebury, Connecticut

Volunteering has been an important part of my life since childhood. Over the years, I have committed my time and energy to numerous non-profit organizations. I majored in psychology and graduated Magna Cum Laude from Amherst College. I also earned an M.P.H. in Geriatrics and Gerontology from Columbia University. I am married to an amazing man and the proud mom of two adult children and a grandson. I love to sing, read, learn new things, meet new people and spend time with my family. I enjoy participating on the Board and I am happy to be of assistance to patients, their families, and caregivers.

Rhonda Rowland

Vice President
Atlanta, Georgia
Email: rhonda.rowland@wilsonsdisease.org

Communicating medical and health news and information has been my lifelong career.  My compassion and interest is a direct result of being diagnosed with Wilson disease at the age of 21 while I was a senior in college.  I earned my Communication Arts degree at the University of Wisconsin-Madison where an internship at the UW’s Cancer Information Service started me on my career path.  After marrying my college sweetheart we moved to Atlanta where I had a medical reporting career at CNN for 16 years.  I left my full-time career to raise my two children and continued doing freelance medical video production and consulting.  I love golfing, biking, skiing, walking the beach, reading and spending time with family and friends.  I got involved in the Board so I could use my communication skills to help raise awareness for WD.

Carol Terry

Co-Founder and Secretary
Hampton, Virginia
Email: carol.terry@wilsonsdisease.org

Carol graduated from the University of Utah in 1976 with a B.A. degree in Accounting, and retired after 31 years Federal Government civil service in 2002 as a supervisory GS-15.  She was diagnosed in 1973 with Wilson disease, which resulted in neurological impairment.  She was misdiagnosed for almost two years, and her experience has been documented in an article she wrote which was published in the American Journal of Nursing, as well as an article written about her by Berton Roueche for New Yorker magazine.  She helped found the Wilson Disease Association in 1983 and served as its President for ten years.  She has also served as Vice-President and Treasurer and has been a member of the WDA Board since its founding.

Steve Walsh

Treasurer
Boulder, Colorado

Stephen lives in Boulder, Colorado and has a daughter with WD. He went to college at the University of Colorado and graduated with a B.S. in finance.

Members

Drew Katz

Cherry Hill, New Jersey

Drew Katz is a successful entrepreneur whose passion for giving has made him a generous philanthropist as well. He is guided by the words that drove his Dad, Lewis Katz: “You can’t live a perfect day without doing something for someone who will never be able to repay you.” (John Wooden). He is the CEO of one of the nation’s fastest-growing out-of-home advertising companies, Interstate Outdoor Advertising. In 2003, Drew created The Rachel & Drew Katz Foundation to lift the hopes and aspirations of those facing difficult challenges.

Drew’s current board memberships include the National Constitution Center, Temple University, Dean’s Advisory Council at Stanford Law School, Outdoor Advertising Association of America, N.J. Pandemic Relief Fund and Wilson Disease Association International.

Drew graduated from George Washington University in 1993 and received his J.D. from Stanford Law School in 1996. In 2013, Drew married Rachel Lauren Snyder. They have two children, Maya and Leo.

Alice Williams

Toronto, Canada

When I first learned that both my young adult children had Wilson disease, I felt blindsided and completely alone. Joining WDA as a board member has given me hope for a brighter future for my kids.

I am thankful to be part of a strong global community of WD patients, caregivers and advocates, united in better understanding, treating and ultimately curing WD.

Having recently retired from a 30+ year career in corporate communications, I look forward to applying my skills to raise pubic and medical awareness about Wilson disease.

In addition to WDA, I am also a board member of the Canadian Organization for Rare Disorders (CORD) and a Patient Partner with University Health Network (a public research and teaching hospital network in Toronto, Ontario) to offer insights from the patient/caregiver perspective on a variety of projects to improve healthcare delivery and outcomes for patients.

Lana Escamilla

Kalamazoo, Michigan

I am a Wilson disease patient who was diagnosed at 22 after experiencing liver failure. I temporarily lost mobility, the ability to read, write and concentrate. I had tremors, slurred speech, and was days away from a feeding tube. I recognize how incredibly fortunate I am to be alive today and to have achieved my goal to work as an attorney. Joining WDA as a board member gives me an opportunity to be a voice for other patients and to work to improve people’s lives that are affected by Wilson disease.

Edward Tabor

Bethesda, Maryland

I am an M.D. who has worked in the fields of hepatitis, liver cancer and parenteral nutrition. Previously, I was Director of two FDA divisions; in addition to regulatory work there, I managed an active laboratory-based research program on viral hepatitis and liver cancer. I also worked at the National Cancer Institute (at NIH) where I supervised a cancer research program with six laboratories. From 2012 to 2020, I was Vice President for Regulatory Affairs North America at Fresenius Kabi, a manufacturer of parenteral nutrition products. With my interest in liver disease and my background at FDA and at a pharmaceutical company, I hope to be able to make a contribution to the advancement of Wilson disease treatment.

In Memoriam

Mary Graper

July 13, 1950 – June 25, 2023

Mary, a mother of three (two of whom have WD) and a devoted wife, raised her family with her husband, Bill. Just over 20 years ago, she joined the Board of Directors of the Wilson Disease Association and, in 2003, became its president.

In 2005, Mary began to address with the WDA Board the possibility that we could designate some medical facilities as WD Centers of Excellence (CoE) if they met certain specific criteria. We began to work with our Medical Advisory Committee to develop the criteria and establish a CoE policy.

In 2008 Mary wrote and had published a 32-page patient handbook titled “Maintaining a Successful Treatment Plan”.  Mary thought it was important that patients and their families have information in lay language about how to take part in their own care.

Mary prepared the first strategic plan for the WDA before she was president to reach those goals. Later Carol Terry pushed to start a Patient Registry, and Mary was the primary supporter of Carol’s initiative. After 13 years as President, Mary became the VP of Scientific Affairs. She also contributed a chapter to Dr. Michael Schilsky’s book, Management of Wilson Disease: A Pocket Guide (Clinical Gastroenterology).