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Dec. 18, 2015

TOPIC: Advocacy, Patient Stories

Help Tara Pass School Bus Legislation

Posted by Lisa Sencen
A great supporter of NORD, Tara Notrica, sent some staff members at NORD the following letter with the determination to get an important piece of legislation passed. We’re happy to share her letter with the community in an effort to spread the message and get this legislation passed.
A piece of writing done by Tara's daughter for her 5th grade class. She says, "My mom may be different but she is just as amazing as everyone else and as brave."

A piece of writing done by Tara’s daughter for her 5th grade class. She says, “My mom might be different, but she is just as amazing as anyone and as brave.”

“Good Afternoon,

As I was lying in my bed during the dark hours of night at 100 pounds, attached to a feeding tube for twelve hours a day and flirting with death, I wondered what was truly going on with my body, and what would happen to my two small children if I died.

Prior to March 31, 2006, I had it all.  I had a happy marriage, a wonderful husband, two beautiful children and my career as a Special Education Teacher.  “In a New York Minute,” everything drastically changed.  It all started with the catastrophic hair loss that left me bald in 5 short days, multiple misdiagnoses, trials of toxic drugs, and ultimately led to the inability of my body to absorb vitamins, minerals and nutrients from food sources.  Each day, I struggled with trying to raise my two children while concurrently performing extensive research and traveling the country in search of a proper diagnosis.  On April 1, 2011, I was finally diagnosed with Mast Cell Disease.

Over time, I have convinced my doctors to try a therapy that would potentially be a cure.  This ultimately led to an autologous stem cell transplant which I continue to recover from.

Simultaneously, I continued to advocate for a New York State piece of legislation that will provide school bus transportation for certain children.  NYS Bill S248B-2015, sponsored by Senator Jack Martins, passed in the Senate on June 15, 2015.  NYS Bill A1470B-2015, sponsored by Assemblyman Cusick, remains in the Assembly Education Committee.

I am hopeful you will consider sharing my story to serve as a source of inspiration for others who are battling a rare disease and to help pass this important piece of legislation.

If you require any further information, please feel free to contact me by email at [email protected].

I look forward to hearing from you in the near future and for your support.

Thank you for your time and consideration.


Tara Notrica”