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“Show Your Stripes” on Rare Disease Day

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Date & Time

February 28th, 2021 | 12:00 am - 11:59 pm

Location

Various Mercer Island businesses | Downtown Mercer Island, WA 98040

Description

Show your stripes on February 28th and shine a light on the millions of Americans living with a rare disease, including many in our local community. According to the National Institutes of Health (NIH), a disease is rare if it affects less than 200,000 people in the United States. For the more than 7,000 known rare diseases, 90% are still without FDA-approved treatments. But you can help raise awareness and make a difference – by wearing a zebra-striped mask (available soon at a local business near you), snapping a selfie, and sharing a message about Rare Disease Day on social media. More details in the invitation below!

A special invitation from local mom, Jill Hawkins:

In our country, rare diseases affect over 25 million Americans, making them not so rare after all. My children, Charlotte and Cooper, have a rare genetic disease, FAM177A1, causing intellectual disability, autism, epilepsy and more. We know of only a few other cases and there is no treatment. Ford Parks, son of Mercer Islanders Effie and Casey Parks, has CTNNB1 syndrome, a rare disease causing global developmental delays. Some symptoms include microcephaly, hypotonia, dystonia, and intellectual disability, among a wide array of other symptoms.

You can imagine the loneliness of having a disease most people have never heard of, has no treatment, and is not even being studied by medical researchers. Raising public awareness truly makes a difference. It gives families like ours hope and can lead to new, life-saving treatments. In addition, insurance companies, physicians, elected and other officials may not be familiar with their diseases.

Rare Disease Day is marked globally every year on the last day of February – the rarest date on the calendar – to underscore the nature of rare diseases and what patients face. The National Organization for Rare Disorders (NORD®) is the sponsor of Rare Disease Day in the United States. NORD’s “Show Your Stripes” campaign’s core message is to raise awareness and show support for those living with rare diseases.

Effie and I, in conjunction with the Mercer Island Chamber of Commerce and several Mercer Island businesses are leading a “Show Your Stripes®” campaign. By February 20th, zebra striped masks will be available for free at several Mercer Island businesses (MI Athletic Club, The Home Collaborative, and others TBD). You can also stop by my house and get a mask from the Little Free Library out front (which, coincidentally, contains books on disability and diversity). My address is 8838 SE 72nd Place, Mercer Island.

We hope people will wear these masks and on February 28th, post a picture on social media with a message about Rare Disease Day using the hashtags #ShowYourStripes and #RareDiseaseDay. Together, we can make a difference for the millions of patients impacted by rare disease. – Jill

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