“The mission of the IWSA is to promote international knowledge and awareness of WAGR syndrome and its complications and treatments, to stimulate research and to reach out to those affected by WAGR syndrome in an effort to improve their lives”
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What we do and how we do it
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The International WAGR Syndrome Association is a network of families, health care professionals, educators and others who care for someone with WAGR syndrome. Our members are located all over the world.
The IWSA:
- provides information about WAGR syndrome
- supports and encourages individuals and families affected by this disorder
- promotes research and public awareness
The IWSA is a non-profit group, and is run entirely by volunteers. Membership is free. Funding comes from donations and grants.
Because of our non-profit status as a public charity, we regret that we are unable to assist in fundraising for individuals or assist with medical expenses.
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Activities of the International WAGR Syndrome Association:
Website
This website is constantly improved and updated to provide instant access to information about WAGR syndrome for families and professionals.
Email Listserv - Discussion - http://health.groups.yahoo.com/group/WAGR/
More than 150 people belong to the IWSA private email discussion group. This listserv allows members to communicate with others who understand the joys and the challenges of WAGR syndrome.
FREE Newsletters - http://www.wagr.org/newsletters.html
Family profiles, photos, in-depth articles on WAGR syndrome, and group activities are shared through a printed newsletter, sent to members through the mail. You may sign up here: http://www.wagr.org/newsletters.html
Information
Information packets for parents - medical articles,guidelines for physicians, brochures and resource lists are available online or through the mail. To receive information by mail, please contact:
Julie Dell - hcdtank@yahoo.com
WAGR Weekend- http://www.wagr.org/wagrweekends.html
Family get-togethers allow families of people with WAGR syndrome to meet in person in a casual and friendly atmosphere, to share a few days of rest and a whole lot of fun. The annual WAGR Weekend is usually held in the US during July, but small get-togethers of families in other countries are also held. Watch the WAGR Weekend page on this website for info on upcoming events.
Current Research
International WAGR Syndrome/11p Deletion Research - Open enrollment 2008
National Institute of Child Health and Human Development/
National Institutes of Health (NIH)
Children and adults with WAGR Syndrome and their parents are invited to participate in a clinical study sponsored by the National Institute of Child Health and Human Development, which is part of the National Institutes of Health (NIH) http://www.wagr.org/nichdnihresearch.html
University of Miami School of Medicine - Enrollment closed.
In 2008 a research project on WAGR syndrome was completed at the University of Miami School of Medicine.
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The staff of the IWSA is made up of individuals volunteering their time and energy to fulfil our mission.
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Executive Officers
President – Tammie Hefty, MA - Tammiejo@mhtc.net
Tammie received her BA in Communication Studies from Winona State University and her MA in Communication Studies from the University of Wisconsin, Milwaukee. She is an Office Administrator at a dental office in Madison, WI. Tammie and her husband Jeff have a daughter, Evie who has WAGR syndrome.
Vice President - Catherine A. Luis - CatherineLuis@msn.com
Catherine co-founded our organization and she designs and edits our organization's web site. She created MedQuest, the survey used by our organization to gather medical statistics and health information about children with WAGR syndrome. Information from MedQuest has been used in the publications "WAGR Syndrome" in Management of Genetic Syndromes 2004 and "WAGR Syndrome: A Clinical Review of 54 Cases" accepted for publication in Pediatrics in 2005. She previously worked in the public school system as an aide for children with visual impairment. She lives in New Jersey with her husband John and adult daughter Irma.
Irma has WAGR syndrome.
"To accomplish great things, we must not only act, but also dream; not only plan, but also believe."
Anatole France.
Treasurer – Jeffrey Hefty, B.A. – jhefty@mhtc.net
Jeff has a B.A. from Winona State University in Broadcast Journalism.
After several years working in television news he switchd careers and is now working for Humana Insurance Company in the sales department. Jeff and his wife Tammie live in Mount Horeb, WI with their only child,
Evie who has WAGR syndrome.
"Do not pray for easy lives. Pray to be stronger people." John F. Kennedy
Secretary & IWSA Historian - Julie Dell - hcdtank@yahoo.com
Julie lives in Pennsylvania with her husband and three kids. Her son, Hayden, has WAGR Syndrome. Julie traded in business management to be a full time mom. She now works part-time for the YMCA and enjoys being able to stay home with her kids.
“The best and most beautiful things in the world cannot be seen or even touched. They must be felt within the heart.” Helen Keller
Board of Directors
Chairperson & IWSA Health Consultant -
Kelly Trout, RN, BSN KellyTrout@sbcglobal.net
Co-founder and Past President of the IWSA, Kelly is Health Consultant for the group and assists families with questions about WAGR syndrome, diagnostic testing, and medical procedures. She also assists physicians regarding the features and complications associated with this disorder, facilitates medical research, attends medical conferences, and gives presentations on WAGR syndrome. She has written numerous articles on WAGR syndrome for professional and lay publications. Kelly lives with her family in San Antonio, Texas. Her daughter Caroline has WAGR syndrome.
Board Member - Editor & Publisher of WINGS the IWSA Newsletter
Anne Marie Prusakiewicz - TheMooZoo@aol.com
Annie is one of our co-founders, former Chairperson and and the editor of our "WINGS" newsletter.
She designed the former The Reaching Out web site, which was the first web site specifically dedicated to WAGR Syndrome. Annie works for a local public school system in Michigan where she lives with her husband and their two children. She is very active with her children and a strong advocate for her son, Nicholas, who has
WAGR syndrome.
“Challenges are gifts that force us to search for a new center of gravity. Don’t fight them.
Just find a different way to stand.” By Oprah Winfrey
Board Member - Shari Krantz - classicshari@yahoo.com
Shari lives in Maryland with husband Jim and family. Together they have three grown sons and three grandsons, as well as daughter Amy, a high school freshman. She received a degree in photography from Montgomery College and for more than 15 years worked in Corporate Communications managing public and employee relations for an energy and environmental consulting firm. For the past 15 years, Shari has owned and managed an auto collision repair center in suburban Washington, DC. She enjoys traveling, gardening, boating and fishing, and spending time with her family.
"The best and most beautiful things in the world cannot be seen or even touched. They must be felt within the heart." Helen Keller
Board Member - Tom Cox, M.A. - gocox84@juno.com
Tom is the pastor of Evangelical Presbyterian Church in Levittown, Pennsylvania, which was the site for WAGR Weekend 2006. Tom has contributed several articles to our newsletter over the years. He received his Master’s from Reformed Theological Seminary in Orlando, Florida where he is currently working on his doctorate. He and his wife Kelli have two children: Jacob and Jenna. His daughter Jenna has WAGR syndrome.
"God whispers to us in our pleasures, speaks in our conscience, but shouts in our pains: it is His megaphone to rouse a deaf world ." C.S. Lewis
Board Member & IWSA Educational Consultant
Rhonda Sena, M.Ed. - casasena5@yahoo.com
Rhonda is a co-founding member and former officer of our organization. She attended the University of New Mexico, receiving her Bachelor of Science in Elementary Education in 1993 and her Master of Arts in Elementary Education in 1994. She currently holds a K-8 teaching licensure, level 2 in New Mexico where she resides with her husband Alfred and their three children. Rhonda acts as Educational Consultant to our organization, volunteers as a parent advocate, and helps research and implement positive behavioral interventions for children with maladaptive social behaviors.
Her son, Alex, has WAGR Syndrome.
“Life is a succession of lessons which must be lived to be understood.”
Thomas Carlyle
IWSA Consultants
IWSA Health Consultant - Kelly Trout, RN, BSN - KellyTrout@sbcglobal.net
IWSA Education Consultant - Rhonda Sena, M.Ed. - casasena5@yahoo.com
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