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What does Rare Disease Day Mean to You? It Means “Josephine” to Us!

February 28, 2014
Posted by Alexis Washington

February 28th is Rare Disease Day!Rare_Disease_Day_2014_288x288px

What is Rare Disease day? Rare Disease Day is an international advocacy day to bring widespread recognition of rare diseases as a global health challenge. The day is celebrated on the last day of February every year.

This year we are showing our support for our: “J-BEAN”

jbeanJosephine is the 5-year-old daughter of our Sheldon Senek, she has a disease called Tetrasomy 8P Mosaicism. An extra chromosome 8 appears in some of her cells, causing various physiological and learning issues. She is one of 22 people in the world diagnosed with the disease.

But to us, she isn’t defined by her disease….

To know “The Bean,” is to love The Bean!

But there is limited research or resources that are helpful to Josephine, which makes it very important to help get the message out to raise awareness! Her mother Krysta Senek, (Sheldon’s wife) played a major role in getting the town, where they reside,  of West Orange, New Jersey to pass a Proclamation, naming Feb. 28 “Rare Diseases Day.”

Krysta Senek being honored by West Orange MayorWest Orange – Mayor Robert Parisi and the West Orange Township Council, recently thanked Krysta and another family for being instrumental in bringing this important day into the spotlight. In an interview in with the AlternativePress.com, Krysta said: “By getting our story out in the open, maybe there will be SOMEONE ELSE out there who CAN understand or who has the SAME disorder.”

We at Eagles Talent are trying to do our part, we hope you will do yours and help spread awareness!

Lastly, Krysta leaves us with some wise words about rare disorders:

“The most important thing I want to get across about rare disorders and my daughter are: don’t make an assumption THAT a kid is spoiled and THOSE parents are not in control – Josephine’s disorder is invisible physically…”

 

To learn more about our Josephine “J-bean,” contact Krysta Senek by visiting her blog, https://www.normalforjosephine.com.

To learn more about the global initiatives supported through rare disease day, please visit
rarediseaseday.org.

 

Alexis Washington
Posted by Alexis Washington
Alexis Washington writes about expert keynote speakers and Motivational Speakers, as well as tips and tricks for corporate meeting planners. If you need a guest professional speaker or corporate entertainer for your next convention or conference, you can visit EaglesTalent.com.

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