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WINGS Fall/Winter issue
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Do you have an idea for the monthly online or WINGS newsletter? Do you enjoy reading the personal family stories in each issue?
We are looking for families to feature in upcoming issues.
We are always looking to highlight our special children, their challenges and accomplishments. Please contact Annie Prusakiewicz at TheMooZoo@aol.com |
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Dear Friends and Families of the IWSA,
We would like to thank you for your ongoing support for the IWSA.
Your donations and fundraising support enable us to provide free newsletters, gifts for hospitalized children, host our website, and finance our annual WAGR Weekend event. As well as helping families with financial assistance to attend WAGR Weekend.
Each and every dollar goes towards helping the IWSA fulfill our mission.
"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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Giving my Castle a Foundation
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 | | Tammy Hefty - Ready for Zumba |
What started with a brief itching in my brain, an "I Wonder What Would Happen If..." kind of moment, soon became a three hour fundraising effort for the International WAGR Syndrome Association which yielded over $300 in donations. I wanted to do something fun, that was my own, that I could give my friends and family an opportunity to participate in a way give back to the IWSA.
I know there are marathon fundraisers, but you only catch me running when I'm being chased by something. So, I decided that I would like to do a Zumba-thon! After contacting an acquaintance who I knew worked at Pinnacle Fitness in Madison, WI; she directed me to Susan Bozoki the organizer and creator of the Fundraising Fitness Community. I was blessed! Susan took the bull by the horns and solicited the raffle items that would be given to random attendees. She created an event on Facebook and advised me that a $10 suggested donation would mean at least $10 a person and maybe more for the IWSA. Susan secured a location at Pinnacle, and the instructors for Zumba, Turbo Kick, and Hip Hop Hustle. All these individuals donated their time and talents for the IWSA. The Fundraising Fitness Community also provided trail mix, bananas and re-hydrating beverages.
I couldn't believe how quickly the event came and went. I hardly lifted a finger. On the night of the event, I laid out WINGS newsletters, brochures, and copies of our annual report so the donors would know exactly how we spend our money. I had two opportunities to talk about the IWSA and what it was like to have a child with such a rare condition. We danced, kicked, hopped and sweated our way through the next 3 hours and, Susan was right! The donations averaged $10 per person and at times even $25 was donated.
Henry David Thoreau said, "If you have built castles in the air, your work need not be lost; that is where they should be. Now put foundations under them." http://www.inspirational-quotes.info/inspirational-quotes-1.html It's so true. I can take my dreams, my "what if's" and turn them into reality by just giving them a little foundation on which to stand.
I encourage everyone to try something like this. It's an opportunity to let others into our world, to talk about WAGR/11p Deletion Syndrome, to let our friends and family know what is important to us and why. If all you get out of it is $10, then it's $10 the IWSA didn't have before. If you are fortunate enough to get $300, then we just covered the cost our keeping our website running for another year. Build a foundation layer by layer until it reaches the castle you built in the air. The rewards far outreach the effort you put into it.
Tammy Hefty, Wisconsin (Evie's mom)
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WAGR Weekend 2012 / July 20-22, 2012 |
 9715 Washingtonian Blvd. Gaithersburg, MD 20878 Phone: (301) 987-0900 Mark Your Calendar and Make Your Plans to Attend WAGR Weekend 2012 Join our families in Gaithersburg, Maryland, July 20-22, 2012 for a weekend of fun, camaraderie, and information gathering! Our hotel plans are confirmed and we are thrilled to have secured a $69.99 room rate (double beds) for our families. Limited rooms available - first come, first served The SpringHill Suites hotel is only about 15 minutes from the National Institutes of Health in Bethesda, Maryland where the WAGR Syndrome/11p Deletion studies are ongoing. This may be a great opportunity for you and your family to participate in the study AND attend WAGR Weekend. For more information about the studies, please call Dr Joan Han, lead investigator for the NIH WAGR/11p Deletion studies, will be joining us on Saturday, July 21st to provide study updates as well as time to meet with and spend the day with our families. We are planning another great weekend of activities, including the water park, puttputt course, open gym time and catered meals, at Bohrer Park. We hope to see you there! More information will be provided soon. Financial assistance is available for families wanting to attend but who may have difficulty affording the expense. If you would like additional information or have specific questions, please contact Shari Krantz at classicshari@yahoo.com |
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Through research, support and the sharing of information, our hope is to improve the quality of life for individuals with WAGR/11p Deletion Syndrome.
Sincerely,
Annie Prusakiewicz
IWSA Board Chair, Co-Founder and WINGS Editor
International WAGR Syndrome Association |
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