Westlake Park | 06/03/2017 | 11:00 am – 4:00 pm
One in ten people in the United States suffer from a rare disease. That is 30 million people in the US. Come learn about what makes a disease or disorder “rare,” learn about different rare medical conditions, what questions remain unanswered, and what you can do about it. Come get inspired!
1 in 10, could be you!
Dynamic Speakers
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.
Information Booths
A number of organizations will be represented. Face painting and activities for kids and a photo booth will also be offered.
Live Music
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.
WHAT CAN I BRING?
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:
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Stress Balls
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Coloring books
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Crayons and/or markers
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Look and Find Book
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Glitter glue bottle
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Soft pillow and/or blanket
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Squeeze toys
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Playdough
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Sensory (textured) balls
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Calming music
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Bubbles, pinwheels or Noiseless party blowers
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Puzzles
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Books
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Stuffed Animals
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Kaleidoscope
Organizations Represented
Speakers
James B. Hendricks, Ph.D- President, Seattle Children’s Research Institute
Dean Suhr- President/Co-Founder, MLD Foundation
Erica Mossholder- Executive Director of CCA
Kendall Davis- Sr. Manager, Strategic Alliances of Global Genes
Meagan Holt- Director of Patient Branch of Project PC
Dawn Shaw- Author/Speaker www.facinguptoit.com
Kathy Devanny- Advocacy Relations and Outreach Specialist of Patient Worthy
Carolina Sommer- Founder/CEO/President of BORN A HERO
Rare Medical Conditions Represented
Adrenal Insufficiency
Pfeiffer Syndrome
Metachromatic Leukodystrophy
Mitochondrial Disease
Kawasaki Disease
Zellweger syndrome
Narcolepsy
Charcot/Marie/Tooth
Niemann Pick
Fibromuscular Dysplasia
Ehlers-Danlos Syndrome
SYNGAP Syndrome
Conradi- Hunermann syndrome
ADNP Syndrome/Helsmoortel Van Der Aa Syndrome
Teratoma Tumor
Fibrous Dysplasia
Polyostotic Fibrous Dysplasia
Gastroschisis
Platelet Disorder
Polycystic Kidney Disease
Necrotizing Enterocolitis
Familial Chylomicronemia Syndrome
Hermansky-Pudlak Syndrome
Castleman Disease
Galactosemia
Huntington’s Disease
Ataxia
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