“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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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.
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
More than 150 people belong to the IWSA email discussion group. This listserv allows members to communicate with others who understand the joys and the challenges of caring for a person with WAGR syndrome. You may join the email listserv here:
http://health.groups.yahoo.com/group/WAGR/
FREE Newsletters
Family profiles, photos, in-depth articles on WAGR syndrome, and group activities are shared through a printed newsletter, sent to members through the mail.
Sign up for our newsletters or read past newsletters:
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:
Tammie Hefty - tammiejo@mhtc.net
WAGR Weekend
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
The IWSA has two ongoing research projects:
University of Miami School of Medicine
In 2007 we launched the first phase of research on WAGR syndrome in collaboration with the University of Miami School of Medicine.
You can learn more about this research here:
http://www.wagr.org/univofmiamiresearch.html
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
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Executive Officers
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. Catherine previously worked in the public school system, acting as an aide for children with visual impairment. She lives in New Jersey with her family.
Her daughter, Irma, has WAGR syndrome.
"To accomplish great things, we must not only act, but also dream; not only plan, but also believe."
Anatole France.
Acting Vice President - Karen Rose, M.A. - KarenRose224@yahoo.com
Another of our founding members, Karen received her Bachelor of Arts from State University of New York in 1982, and her Master of Arts from New York University in 1986. She was formerly Co-President of the Special Education Advisory Committee in Bethel, Connecticut where she resides with her husband, Chuck, and their two sons. She currently teaches Social Studies at New Rochelle High School in New York. Her son Alex has WAGR syndrome.
"Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has." Margaret Mead
Treasurer - Rebekah Deas, B.S. - Luciouslily712@yahoo.com
Rebekah received her Bachelor of Science in Biology from Francis Marion University in 1998, and spent four years working as a Pathologist Assistant in Surgical Pathology. Becky lives in North Myrtle Beach, South Carolina with her son, Ethan, who has WAGR syndrome.
"Do not go where the path may lead, go instead where there is no path and leave a trail."
Ralph Waldo Emerson
Secretary -
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.
Assistant Secretary & IWSA Historian - Julie Dell
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
Anne Marie Prusakiewicz - TheMooZoo@aol.com
Chairperson - Editor & Publisher of WINGS the Newsletter -
Annie is one of our co-founders 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 - Karen Rose, M.A. - KarenRose224@yahoo.com
Another of our founding members, Karen received her Bachelor of Arts from State University of New York in 1982, and her Master of Arts from New York University in 1986. She was formerly Co-President of the Special Education Advisory Committee in Bethel, Connecticut where she resides with her husband, Chuck, and their two sons. She currently teaches Social Studies at New Rochelle High School in New York. Her son Alex has WAGR syndrome.
"Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has." Margaret Mead
Board Member - RoseMarie Mallon, M.S. - RoseMallon@aol.com
Rose is also one of our founding members. She received her Bachelor of Science in Individual and Family Studies from Pennsylvania State University in 1984 and received her Master of Science in Counseling and Psychological Services from Salem State University. Rose lives in a suburb of Boston, Massachusetts with her husband, Rich, an attorney, and their children. Her son Ricky has WAGR syndrome.
"Adversity doesn't build character, it reveals it".
Anonymous
Board Member - Shari Krantz - classicshari@yahoo.com
Shari lives in Maryland with her daughter Amy (12 years old, WAGR) and husband Jim. She also has two grown sons and a one-year-old grandson. Received an associates degree in photography from Montgomery College and for many years worked in Corporate Communications managing public relations for an environmental consulting firm. For the past 14 years, Shari has owned and operated an autobody collision repair center in the suburban Washington, DC area. Shari enjoys traveling, gardening, fishing and boating, and spending time with her family.
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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.
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| First Newsletter - 1996 - Editor in Chief June Kuntze |
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| Second Issue 1997 |
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| 1998 First Issue ReachingOut Newsletter - Editor in Chief Annie Prusakiewicz |
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| Second Issue ReachingOut Newsletter |
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