For me, one of the greatest things about being involved with QuickZip are the connections I am lucky enough to make and the communities we become a part of. This week we are honored to share a story about one of our customers, and in the process we hope to bring awareness to a disorder called Angelman Syndrome and efforts of the Angelman community to find therapies and a cure.
Kim found us. She was searching the internet for products that would help her family during frequent sleepless nights. Kim is an amazing mom, raising 4 boys, helping her husband run a real estate business, and CEO of “Corporation Joey”: the team that provides care and therapy for her oldest son Joey, an 18 year old with Angelman Syndrome. (You’ll be further impressed when I tell you that she makes time for a weekend away with her husband once a year!)
Angelman Syndrome is a genetic disorder resulting in severe global developmental delays, lack of functional speech, epilepsy, abnormalities in motor function and a unique affectionate and loving, happy disposition with frequent laughing, smiling and excitability. Joey has been challenged with physical disabilities, seizures, and a sleep disorder. He attends a program at the local high school and receives speech, occupational and physical therapy there. Angelman syndrome is something Joey has, not who he is. Joey is very social and has an active life. He has an adapted tandem bike so he can enjoy one of his favorite past times of bike riding. He also enjoys swimming and going to the movies with his family and friends.
Angelman Syndrome is often misdiagnosed as developmental delay, autism or cerebral palsy . When Joey was diagnosed at 15 months, Kim was told that there were 1000 cases in North America; now it is diagnosed in 1 in 12000-15000 births and there are believed to be at least 23000 cases in the US.. Even though this is a relatively small population, it is an incredibly tight, active and inspiring community. Angelman families connect around the world to help each other when there is often little information or support available and have pushed the medical and pharmaceutical professions to put a cure for Angelman Syndrome within reach. One Angelman parent, as she advocates for pushing beyond our beliefs and limitations, reminds us that at one time there was no treatment for diabetes, and insulin was not in the realm of believably.
The Foundation for Angelman Syndrome Therapeutics (FAST) was formed in 2008 by a parent after hearing that her daughter had a disease for which there were no treatments and no hope for a cure. FAST has funded over $4 million of ground-breaking research since 2011.
QuickZip is very excited to join the effort today, helping spread the word about Angelman on International Awareness Day and donating a portion of our proceeds this month to FAST. We ask that you learn more about Angelman Syndrome at www.cureangelman,org and www.angelman.org; share what you have learned within your network; support those around you with the disorder or other special needs; visit the Foundation Facebook Page to enter the QuickZip giveaway; and donate if you are able.
Please share this blog with your friends, including our coupon code: Angel20 for 20% off your order at QuickZipSheet.com, valid 2/15-2/17.