Guest Blog: WaterFire – Lighting the Way to Awareness
The Orphan Druganaut Blog is honored to have Patricia Weltin as a Guest Blogger. Patricia is the Executive Director and Founder of the Rare Disease United Foundation (RDUF), a state-based, non-disease specific organization in Rhode Island, Massachusetts, and Pennsylvania. As a rare disease mom with a background in Finance, Patricia started working in the rare disease space to help raise awareness. In just a little over 2 years, RDUF has had two of the largest World Rare Disease Day events in the country, garnered support from legislators in RI and MA, and successfully advocated on both state and national legislation. Patricia and her team are innovators in the rare disease space and have used their own rare disease journeys to positively affect change.
WaterFire was created by Rhode Island based artist Barnaby Evans. At dusk, on select evenings from April to October, Providence’s three downtown rivers are lit with over eighty sparkling bonfires. The effect is magical. Each WaterFire event can attract between 65,000 to 100,000 attendees. The beauty and majesty of WaterFire attracts people from all over the world, defining Providence, Rhode Island as a global destination. My daughters and I have attended nearly every WaterFire event for the past few years and it never ceases to amaze.
The Rare Disease United Foundation is partnering with WaterFire to create an awareness event for rare diseases that is unprecedented in it’s reach, creativity and scope. An entire street will be blocked off and lined with tents filled with artwork from rare disease patients, their loved ones and their advocates. With the support of stakeholders in the rare disease community, we can include music, dancing, a 100 person patient procession, and many other ways to share our message.
The year 2014 saw a big increase in the number of Rare Disease Day events across the country. Most, including our Rhode Island event, are attended by patients, patient advocates, medical professionals, people in the biotech industry and other stakeholders. Many events were geared toward raising awareness to our legislatures. Each and every one of these events is imperative to the rare disease patient. Now that we have come this far, it is time to think bigger. It is time for us to come out of the shadows and be seen. WaterFire will light the way. Where can we reach up to 100,000 people in one night? How can we share our journey in a way that engages a society that remains largely indifferent?
Putting on a WaterFire event comes with a high price, but the value to our sponsors and to the rare disease community is without measure.
RDUF Logo courtesy of Rare Disease United Foundation (RDUF).
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