In The News

Live Like Andi Foundation Helps Fund Clinical Trial for Promising Drug Treatment for ACC Patients

The Live Like Andi Foundation and ACCRF are pleased and proud to announce that proceeds from the 2010 Live Like Andi Walk & Run & Fashion Walk will be funding an important new ACC research project involving two world-renowned Michigan institutions – the Karmanos Cancer Institute in Detroit and the Van Andel Institute in Grand Rapids. The project will pay for biopsies and genomic studies of ACC patients enrolling in a new clinical trial spearheaded by Dr. Pat Lorusso of the Karmanos Cancer Institute.

The clinical trial, which will evaluate the drug Vorinostat, grew out of an earlier clinical trial open to cancer patients with liver problems. Dr. Lorusso saw some promising responses from ACC patients placed in that earlier clinical trial and decided to apply to the National Cancer Institute for funding of an ACC-specific clinical trial. She was successful, however, the National Cancer Institute only funds the costs of administering drugs to patients, not the cutting-edge genomic studies that may guide researchers to the right drugs for the right patients. In collaboration with Dr. Craig Webb of the Van Andel Institute, Dr. Lorusso approached ACCRF about funding these "correlative studies" and, now, the amazing generosity of Live Like Andi supporters will permit this crucial research to proceed.
For more information contact the Adenoid Cystic Carcinoma Research Foundation

A note from Marnie Kaufman, Director, ACCRF:
"Andi has been helping the ACC research process for more than a decade. She helped to rule out some chemotherapy drugs by participating in numerous, and unfortunately, unsuccessful, clinical trials. She donated her ACC tumors that have been used in ACCRF sponsored research projects in different parts of the world…literally. And, now, through her legacy she is bringing thousands of people together to celebrate her love of life and to support crucial research projects that we hope will improve treatments and the outcomes for thousands of ACC families."
April 2010

Excerpted from a speech given by Mike O'Connell, LLA Foundation Director:
LLA Donations Help Fund First Ever Phase 2 Clinical Trial for a Treatment for ACC Patients

"The Live Like Andi Foundation (through contributions from great events such as this) is proud to be funding the FIRST EVER Phase 2 Clinical Trial for a treatment specifically for ACC patients. Hope for those with ACC who may face the same decisions and fear that Andi faced. The clinical trial was just approved and will be conducted by the Karmanos Cancer Institute here in Detroit. Beginning in September, 15 ACC patients will begin treatment for their ACC...."

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Download The Full Heart-Warming Speech
"Doe Days" Golf Outing, Walnut Creek Country Club, Novi, Michigan
July 2010

Honoring Andi

It's been two years since South Lyon's Andrea Whitesell O'Connell died after a 21-year fight with Adenoid Cystic Carcinoma. But her impact on others remains strong, and a foundation started by her husband and children in her honor is flourishing beyond expectations. The Live Like Andi Foundation has raised more than $200,000 in the two-year span to help research the rare form of cancer that claimed O'Connell's life, and according to her husband and Novi High School graduate Michael O'Connell, that research is producing promising results...

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"Honoring Andi"
South Lyon Herald
November 5, 2009

A Message From Mike O'Connell:

In October 2009, I received this amazing announcement from ACC researchers in Sweden and our friends at The ACC Research Foundation. It is somewhat hard to understand (for me) but simply put, it is a big breakthrough in ACC diagnosis and the foundation for direction for treatments that may inhibit the spread of ACC or stop it all together. I was touched to hear this as great news for all of those fighting ACC. What a tremendous ray of "hope" this must shine for all of them.

I am especially moved to know that (of course) Andi has something to do with this. Not only the courage she instilled in those fighting ACC to "keep going" but the sacrifices she made to "try any treatment" to fight ACC.

In one of Andi's most courageous moments, she was determined to see that the tumors removed from her brain (2 months before she passed) be sent for good use. Instead of the tumors being saved for her files she asked that they be sent for research to help find a cure. We contacted our friend Marnie at ACCRF to ask where these samples could be sent for best use. She immediately responded...."oh my gosh...you guys should not be thinking of that right now"...but suggested ...we send them to Dr. Chris M. at University of Virginia. The tumors were implanted in lab mice for advanced study. Under Marnie's and ACCRF's guidance, researchers from around the world convened for the first worldwide conference on ACC research. It was at this conference that researchers from Sweden expressed an interest in obtaining lab mice for ACC research. Many of these samples were donated by Andi. Our children joked that some of the lab mice headed to Sweden wore a peculiar "cheetah"-print scarf. Yes they did!

Read More:
"Fusion Gene Discovered in ACC"
Adenoid Cystic Carcinoma Research Foundation Press Release
October 2009

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