Dear Friend of the IWSA,
Back in 2002, Catherine Luis and Kelly Trout sent out a questionnaire we called "MedQuest," to everyone we knew with family members of WAGR Syndrome individuals.
The MedQuest survey was a huge success. Resulting information from MedQuest taught us--and a lot of doctors--many important medical and developmental things to look for and new and critical ways to help our children.
Now we want to do the same for ADULTS (anyone 15 or older) with WAGR Syndrome.
We hope you will take a few moments to complete this new survey. (Click here to take the new survey) We will share the collected medical data with physicians and researchers (and with you, and the WAGR group) -- but we will NOT share any names or other identifying information.
Or if you prefer, we would be happy to talk with you on the phone and we can discuss the questions together.
Thank you. With your help, we will have more answers--and more hope--for our loved ones with WAGR Syndrome.
Kelly and Catherine
Kelly Trout, RN, BSN
Health Consultant, Board Chair, International WAGR Syndrome Association
Mom to Caroline, age 28, WAGR Syndrome
Vice President, International WAGR Syndrome Association
Mom to Irma, age 23, WAGR Syndrome
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WAGR Weekend 2010
A Celebration of 10 years.
The Krantz & Marshall family at WAGR Weekend 2009 | Summer will be here before we know it and WAGR Weekend 2010 will be a highlight for many of us. We will be meeting in Gaithersburg, Maryland, July 23-25th, 2010, for a fun-filled family weekend. In addition to spending time with other WAGR families and friends, we have a great day planned at Bohrer Park. Planned activities include brief presentations by our NIH medical teams involved with the WAGR Syndrome studies, gym time for kids of all ages, catered lunch and dinner, and admission to the park's water park and putt-putt golf course. Our NIH team has also volunteered to be available during the day to meet privately with families who may have questions or concerns.
This year's weekend gathering, like the many others in the past, provides a unique and wonderful opportunity for families to meet and spend time with others who understand and live with the day-to-day challenges of WAGR Syndrome.
Please visit our website at www.wagr.org to RSVP and make hotel reservations.
It is very important that we get accurate counts of families planning to attend so we can make arrangements for catering and activities.
Contact Shari Krantz at classicshari@yahoo.com if you have any questions or need
additional information.
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Event Info
WAGR Weekend 2010
Gaithersburg, MD July 23-25, 2010 |
