EverythingWyandotte.com

3rd Annual Concert for Noah, Benefiting the Children's Tumor Foundation (6.19.2009)

Published: 06/22/2009 by Rich Cieslowski Jr

The first “Concert for Noah” was put together in 2007 by Noah’s father Frank Tyrybon, Wyandotte resident and member of the local Wyandotte band PsyFunk. Frank got together with his band mates, rallied his friends from other local Downriver bands and organized a six hour concert with all the proceeds going towards research to find a cure for NF through the Children’s Tumor Foundation. The event was a wonderful success.

This year, for the 3rd annual concert, Tyrybon in hopes of find a larger audience and further spreading the awareness of NF, worked closely with Heather Thiede from the City of Wyandotte’s Special Events Office and Lynn Steffensky of the Wyandotte Business Association. The three coordinated the concert with the WBA’s June 3rd Friday Festivities and the “2009 oncert for Noah” was all set to take place at “Wyandotte Theater Park” located at the corner of irst Street & Elm in downtown Wyandotte.

Many in the community were all a buzz with anticipation of the first big summer event at the “Wyandotte Theater Park” and to hopefully set the tone for the rest of the summer, but this was not to be the case. With the threat of thunderstorms looming, it looked as if this worthy outdoor concert was at risk of cancellation. But, thanks to the quick action, trouble shooting and navigation skills of Ms. Thiede, the concert was able to be relocated inside Yack Arena, original home to the 2007 and 2008 concerts. The bad weather and the last minute move to the Yack may have hampered the attendance, but not at all did it hurt the spirit of the event. The awareness of NF was spread, money was raised, and the bands rocked out from 5:30 til 11:00 plus.

This years line-up featured many local favorites with performances by Born Again, RHS Choir and Rovasi, Lakeshoremen Drum & Bugle Corps, NINE (Chicago style cover band), the awesome jam-in blues groups Black Hat Trio and Catfish Project, with PSY-FUNK wrapping up the evenings festivities. Once again… anyone who was in attendance experienced another great “Concert for Noah” and for the Children’s Tumor foundation and the Tyrybons, again another wonderful success.

Noah and Neurofibromatosis:
At the tender age of only 10 months old, little Noah Tyrybon was diagnosed with Neurofibromatosis 1. What started with an innocent trip to the dermatologist to look at some birthmarks turned into a slew of appointments with specialists, geneticists, and eye doctors that will continue for the rest of Noah’s life.

A simple characterization of this genetic disorder can be described as, growth of tumors along nerves anywhere in patient’s body, But, Neurofibromatosis (NF) is actually divided into three distinct genetic disorders. People with NF1 are prone to the development of benign tumors that grow on the nerves anywhere on or in the body. It can also affect the bones, skin, blood vessels, and eyes. In addition, nearly 50% of all people with NF1 have learning disabilities. The disorder, thankfully, does not affect Noah's everyday life at this time. But, growth of tumors along nerves anywhere in the body, could happen at anytime affecting skin, bone and muscle development.
Noah’s NF could occur quite randomly at any point in his life, with no know treatment and no cure, the Tyrybons must just watch and wait. The Tyrybon family's search for information on NF led them to the Children's Tumor Foundation ( www.ctf.org ). This group is leading the charge to solve the NF puzzle through research and to help Noah and others challenged by this disorder.

The first Concert for Noah, in 2007, raised close to $3,000 after expenses, and the Tyrybons raised about $18,000 that year, from the concert, the donations of friends and relatives, a bowling fund-raiser and other events. Last years concert netted $1000, and contributed to a $9,000 total for the Children's Tumor Foundation in 2008. This year's total at the halfway mark is right around $5000. The Children's Tumor Foundation Michigan chapter raises a great deal for NF research each year, mostly from a golf outing that takes place each fall. But, all the rest comes in from events like this concert and many other events that the Tyrybons and many others put on throughout the year. As we all well know, research for debilitating illnesses is incredibly expensive, but through continued funding, breakthroughs are being made and hopefully there will soon be a cure.

Further donations may still be made on-line at:
www.active.com/donate/nfbrooksie2009/TeamNoah

For more information about “Concert for Noah Events” visit:
www.ConcertForNoah.com

You can catch Frank Tyrybon and PSY-FUNK one more time before next year's Concert for Noah at the Wyandotte Street Art Fair from 6:00 to 7:40pm Thursday July 9th, 2009 on the riverfront stage.