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:

  • Stress Balls

  • Coloring books

  • Crayons and/or markers

  • Look and Find Book

  • Glitter glue bottle

  • Soft pillow and/or blanket

  • Squeeze toys

  • Playdough

  • Sensory (textured) balls

  • Calming music

  • Bubbles, pinwheels or Noiseless party blowers

  • Puzzles

  • Books

  • Stuffed Animals

  • 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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