Event Announcement: A Weekend to Mikey Czech

Darien Sport Shop Dedicates “A Weekend to Mikey Czech”

Fundraiser to Benefit The Mikey Czech Foundation To Finance Medical Research For Pediatric Brain Tumors … Friday and Saturday, November 28 and 29 from 9-5:30 and Sunday from 12-5 …

Submitted by the Darien Sport Shop:

Traditionally the weekend after Thanksgiving follows a time of reflection that ignites a season of giving as shoppers flock to stores to find the perfect gift. However, this year, perhaps more than others of recent memory, shoppers may be looking to put more meaning in their selections while supporting humanitarian causes at the same time. On Sept. 7, 2008 a young man from our community, Mikey Czech of New Canaan, was taken from us by a rare form of pediatric brain tumor.  To honor his valiant fight and to raise funds to finance medical research, the Darien Sport Shop is turning the post-Thanksgiving weekend into a three-day celebration of a young boy’s spirit with the hope of creating awareness and an ongoing funding base for this cause.

The events will take place at the Darien Sport Shop’s location at 1127 Post Road in Darien on Friday and Saturday, November 28 and 29 from 9-5:30 and Sunday from 12-5, culminating with the  Darien Chamber of Commerce family tree lighting in the store’s parking lot and arrival of Santa at 5 pm.  The store will donate a percentage of the weekend’s proceeds to the Mikey Czech Foundation. There will be information tables, musical performances, refreshments, vendor trunk shows, and book signings to entertain attendees. A commemorative ornament with Mikey’s inspiring call, “Never, never, never give up!” will also be available with 100% of the proceeds going to the foundation. Gina Zangrillo, President of the Darien Sport Shop, is proud of the event saying, “ When we hear stories like Mikey’s and other young people like him (sadly Darien also lost 9 year old J.R. Schoen this past July in a similar way), our hearts first go out to the families and as neighbors and friends, we feel the call to help in whatever way we can. In our store’s long history, reaching out to our community has always been a primary mission and our hope during these difficult times is that we can continue to pull all of our friends together to make a difference by supporting these locally based efforts.”

On January 6, 2008, his 11th birthday, Mikey was diagnosed with an intrinsic diffuse pontine glioma (“IDPG”), the most deadly form of cancer known to man. IDPGs are inoperable and unable to be biopsied. Approximately 80% of patients diagnosed with IDPGs die within one year of diagnosis; 90% die within two years of diagnosis and 99% die within five years of diagnosis. Conventional treatment consists of general radiation and chemotherapy. Alternative treatments include various clinical trials which, to date, have proven no more effective than conventional treatment.

On January 24th, 2008, Mikey was enrolled in a Phase II clinical trial of Motexafin Gadolinium at The Stephen D. Hassenfeld Children’s Center for Cancer & Blood Disorders at NYU Langone Medical Center. Mikey’s treatment ended on March 6th, 2008. On April 17th, 2008, the first post-treatment MRI indicated that Mikey’s tumor had shrunk by 70%. Mikey’s second post-treatment MRI on July 17th, 2008 indicated that Mikey’s tumor had shrunk another 15% for a total of 85%. On August 1st, 2008, cysts began to form in the area once inhabited by the cancerous tumors, placing pressure on Mikey’s cranial nerves. On September 7th, 2008, Mikey died unexpectedly at his home from complications associated with his brainstem.

The Mikey Czech Foundation, Inc. (the “Foundation”) is a 501(c) (3) non-profit foundation established by Mikey’s family to finance medical research for pediatric brain tumors, including IDPGs which are extremely rare (approximately 150-200 children are diagnosed each year nationwide). The small number of diagnoses each year relegates this form of cancer to “orphan” status within the medical research community, as too few children develop this type of brain tumor to warrant the necessary investment in scarce medical research dollars to find a cure. Because IDPGs cannot be surgically removed or even biopsied, what little research that is being conducted uses adult blastomas as proxies for IDPG research. The problem is that blastomas are not a very good proxy for IDPGs. The Foundation is currently working with the NYU Langone Medical Center Cancer Institute and the Stephen D. Hassenfeld Children’s Center for Cancer & Blood Disorders to establish a new, world-leading pediatric neuro-oncology translational research laboratory in an effort to manage and ultimately eliminate pediatric brain tumors. The Foundation will also approve grants to support pediatric brain tumor research at healthcare, education and medical research facilities throughout the United States. The Foundation’s goal is to raise a minimum of $6.0 million.  Donations can be sent to :

The Mikey Czech Foundation, Inc.
400 Atlantic Street, 12th Floor
Stamford, CT 06901
Online contributions can be made by visiting the website: www.mikeyczech.org.

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