|
World Rare Disease Day will be taking place this year on February 28, 2013. Thanks to those who participated last year. We are partnering with the RARE Project, NORD (National Organization of Rare Disorders) and many other rare disease organizations to help create greater awareness for our rare disease community of millions! See below for two ways to get involved!
 Global Genes Project
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 11th)
- 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.
 National Organization of Rare Disorders (NORD)
The SWF is cooperating with several other rare disease organizations in NJ to hold a special event on March 4th at the State House in Trenton NJ.
This is in response to the NORD call for rare disease organizations to host an event in each state - either at the State House or in an appropriate location - on February 28, or best available date. Through the energetic work of several non-profit organizations there will be a proclamation in both houses of the NJ State legislature and an opportunity for organizations to provide literature and have a panel of knowledgeable people in the fields of medicine, industry, education and patient advocacy. The audience will be the legislators from both the NJ Senate and the NJ Assembly, or their legislative aides.
You can check the NORD website to see what is happening in your state. www.raredisorders.org | 
The SWF Scholarship Fund is a marvelous way to help those in need of financial assistance to attend this conference. This year we need approximately $25,000 to cover scholarship requests. Any contribution you can provide, whether you plan to attend or not, will be gratefully received. Please designate your donation to the SWF Scholarship Fund and give someone the opportunity to change their life.
It's time to start thing about the SWF's 1st Annual Miracle Miles Route to a Cure Walk. Conference attendees will have the opportunity to join the Summer Stroll in Stapleton. We will stroll from Central park to Founders Green where a movie will be played at disk. Those not interested in the movie will be able to take in the sites of the Stapleton Town Center. Transportation will be provided to and from the walk site. (location is about 1 mile from the hotel). For those attending the walk, its not too early to start thinking about creating your Firstgiving Page to raise awareness and funds for Sturge-Weber Foundation programs. 