NOTA - THE NETWORK OF TYROSINEMIA ADVOCATES

Speaker Bio

Jon is president of the Network of Tyrosinemia Advocates.  N.O.T.A., a 501(c)3 nonprofit founded by Jon in 2014, is dedicated to making a difference in the lives of those impacted by the genetic disorder, tyrosinemia. Jon was moved to action after nearly losing his infant son to tyrosinemia in 2009. Through his work with the organization, Jon is making a difference on the local, national and international levels.

The mission statement of N.O.T.A. is:

Ensuring that no child or individual around the globe goes untreated; providing families affected by tyrosinemia the resources available to them; connecting multiple organizations worldwide to build a strong community; offering emotional support to parents, ensuring that they do not feel alone in their struggle and that they have the support they need at critical times; striving for perfect newborn screening in an effort to never again miss a child's diagnosis; and gathering stories of our families, resources, recipes and news related to tyrosinemia to be shared with each other and with hospitals.

Jon is also chief executive officer and owner of Jon Miller Car Care Center. Incorporated in 2006, Jon opened his current facility, located at 330 East Main Street in Tuckerton, in 2012. Jon Miller Car Care Center is a full service automobile repair, emissions repair and NJ state licensed inspection facility and used car dealership.

Jon, a life-long resident of Little Egg Harbor, received a Bachelor of Science degree in business management from Stockton University. He went on to become an ASE (Automobile Service Excellence)-Certified Master Technician who holds certifications in automobile and light truck repair and service.

Jon and his wife, Amanda, reside in Little Egg Harbor with their two young children, Evan and Alice. Driven by Evan's overwhelming enthusiasm for the movie Back to the Future, Jon and his son found and painstakingly converted a 1981 DeLorean DMC-12 into a screen-accurate replica of the time machine from the film. Jon and his family travel and use the DeLorean for fundraising efforts in support of N.O.T.A.

For more information, please see www.NOTAcares.org.