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THANK YOU TO THE 20 INDIVIDUALS/FAMILIES WHO SIGNED UP SINCE THE JANUARY NEWSLETTER TO PROMOTE RARE DISEASE IN THEIR COMMUNITYS, SCHOOLS OR WORKPLACE. YOU CAN TOO!
World Rare Disease Day will be taking place this year on February 29, 2012 - a truly RARe Day!!! We are partnering with the RARE Project and many other rare disease organizations to help create greater awareness for our rare disease community of millions!
The Global Genes Project has provided a vehicle for everyone to show support for the rare disease community, and to raise money and awareness about SWS/KT/PWB and the needs of the rare disease community at large. The Wear That You Care campaign makes it easy for anyone to support kids and their families affected by rare disease - wear jeans, support individuals affected by rare diseases. Wear jeans and jean ribbons at offices, schools, place of worship, etc.. . . the opportunities are limitless.
The SWF has a limited supply of posters and jean ribbons and other materials such as Check It Out cards and brochures for your use.
Make it a fundraiser - host a Wear Jeans day at your place of business. Have participants pay to wear jeans, and then ask the corporation to match what has been raised. This provides an opportunity to not only raise general rare disease awareness in a unique fun way, but also raise some much needed funds for one of the thousands of rare diseases that exist.
The Blue Denim Ribbon has become the unifying symbol of hope for the rare disease community. It is a powerful symbol of unity, family, support, recognizing the millions of families worldwide that are impacted by rare disease everyday.
Please partner with The SWF to bring about awareness for the RARE disease community. We want to work together to show the world that, while our diseases are RARE, our hope is not.
Recap of what you can do to help: (orders need to be placed by Monday, February 20th.
- Order ready made ribbons or ribbon kits - they are free.
- Order a poster(s) - they are free too!
- Create an awareness event about rare diseases, SWS/KT/PWB. You can choose the $ amount to sell the ribbons (between $1-$5 is perfect)
- Take pictures of your friends, co-workers, classmates, etc. wearing their jean ribbons so we can share your great work on the SWF website and other SWF publications and email to Bonnie at bayers@sturge-weber.org.
- Contact Bonnie at bayers@sturge-weber.org or 973-895-4445 x 106 to order ribbons, posters, etc.
- Checks should be made payable to The Sturge-Weber Foundation and mailed to P.O. Box 418, Mt. Freedom, NJ 07970.
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Sturge-Weber Foundation
Rare Disease Day is an international advocacy day to bring widespread recognition of rare diseases as a global health challenge. The day is celebrated on the last day of February every year and as mentioned above, February 29th is a rare day too.