One in 10 people in the United States suffer from a rare disease. That is 30 million people in the U.S. Come learn about what makes a disease or disorder "rare," different rare medical conditions, what questions remain unanswered and what you can do about it. Come get inspired!
Several inspiring people will share their experience working with or being a part of the rare disease community, and present ways that you can help. Speakers include
James B. Hendricks, Ph.D, president, Seattle Children's Research Institute;
Dean Suhr, president/co-founder, MLD Foundation;
Erica Mossholder, executive director, CCA;
Kendall Davis, senior manager, Strategic Alliances of Global Genes;
Meagan Holt, director, Patient Branch of Project PC;
Dawn Shaw, author/speaker; Kathy Devanny, advocacy relations and outreach specialist, Patient Worthy; and
Carolina Sommer, founder/CEO/president, BORN A HERO.
A number of organizations will be represented. Face painting and activities for kids and a photo booth will also be offered. Live music will be provided by Tyler Edwards, who has been featured on MTV and NASCAR. A professional DJ, Bryan Kretz, will also provide music during the event.
Please bring a partial or complete care package if you can. These care packages will be given to children at Seattle Children's Hospital suffering from rare diseases. If you aren't able to bring a care package, please still come – we would love to see you there!
A care package could include the following items: Stress balls, coloring books, crayons, markers, look-and-find books, glitter glue bottles, soft pillows, blankets, squeeze toys, Play-Doh, sensory (textured) balls, calming music, bubbles, pinwheels, noiseless party blowers, puzzles, books, stuffed animals and kaleidoscopes.
Saturday June 3, 11:00 a.m. to 4:00 p.m.
Westlake Park, 401 Pine St., Seattle, WA 98101
For more information, visit http://www.rarediseaseseattle.org/