National Fabry Disease Foundation "Take Our Surveys" Contest
If you are 18 years or older and have the Fabry disease gene, whether you have symptoms or not, you can be a great help in our efforts to better understand Fabry disease and the Fabry disease community. So many of you tell us you would like to help because you took years to get diagnosed, or because you have had major medical events that may have been prevented, or because you have lost loved ones at an early age, or for many other good reasons. This program is one of the many ways you can help others and make a difference.
Please help us to gather information to continue learning about Fabry disease and the Fabry community to support development of Fabry disease education and community support programs.
We will distribute a monthly survey for you to complete through our electronic newsletter service. If you complete the survey in the month it is issued, you'll be eligible to win up to $250.00 in the monthly prize drawing. The monthly prize amount is based on the number of survey participants for each month by awarding $1.00 (one U.S. dollar) for every survey completed.
A separate monthly prize of up to $250.00 will be awarded to the U.S. Fabry disease community and to the global (non-U.S.) Fabry community.
At the end of the year we will have a separate U.S. and global year-end drawing for $500.00 each for everyone who has completed all 12 monthly surveys. If you miss taking a monthly survey in the month it was distributed, you will still be eligible for the year-end drawing if you complete it after the month it was originally distributed as long as all surveys are completed by January 1st, 2015.
Our primary goal is to learn and share useful information but we are using a contest format to increase participation and to add a little excitement to this very important initiative. We still have much to learn about Fabry disease. The monthly survey results we be shared with you and the greater Fabry community. We hope to have a very large number of participants (hundreds) so the results will be a good representation of the overall Fabry community and will be more useful to us all.
Please take the monthly surveys and please share the newsletters and survey links with your family members who have the Fabry gene. We will not share your personal information except your first name only and location such as state, province or county, and country.
Along with completing the surveys, you must subscribe to our monthly newsletter to participate. Your subscription enables us to contact you to verify your status as someone with the Fabry gene if necessary, to clarify your survey answers if necessary, to contact you if you win the prize drawing, and to distribute the monthly survey links to you. The National Fabry Disease Foundation uses the newsletter service subscription list to store all of our contact information to avoid maintaining multiple contact lists with our small staff.
If you cannot accept the prize because of income limitations because you receive social security disability payments or for any other reason, please still take the survey to improve the information collected; just let us know you cannot accept the prize.
If you have any questions or comments, or need assistance please contact Jerry at www.fabrydisease.org or 800-651-9131 (U.S. non-toll-free) or 919-932-7785 (non toll-free number).
Thank you for your support and good luck!