What is The Steven G. AYA Cancer Research Fund? by Angie Giallourrakis

The Steven G. AYA Cancer Research Fund started in March 2006 when our son Steven was diagnosed with Stage Four Osteosarcoma at the age of 15 years. For ten months Steve fought hard dealing with a grueling treatment schedule that included some of the most intense chemotherapy drugs available, two spine surgeries to remove a softball size tumor from the L4 of his spine and reconstruct the spine with two titanium rods, eight screws and a cage to replace the vertebrae, and then radiation to shrink and destroy any lingering cancer cells.. Amazingly he made it and was cancer free… until the fall of 2008 when he was diagnosed with Secondary Acute Myelogenous Leukemia (AML). The Secondary AML was the result of the intense drugs he received to treat the Osteosarcoma. It was a very difficult time. The doctors made no promises to Steve except to say that they would do their best to help him with his fight to survive. And survive he did!

On March 27^th, 2009 Steve had a Bone Marrow Transplant (BMT) from an Allogeneic (non-related) Donor. Thankfully the BMT worked and his new immune system took over! “Cancer Free” and “Engraftment were the best words we could have heard!!!

Although Steve still deals with Chronic Graft vs. Host Disease (cGVHD), a rare condition that occurs following a Bone Marrow Transplant, he carries on with LIFE. He attends the Cleveland Institute of Art and lives independent of us… his parents…(let’s face it, normalcy is a wonderful thing).

So, what is the purpose of the Steven G AYA Cancer Research Fund?

Through our website we want to help create awareness about AYA Cancer. We want Cancer Survivors to know the issues and learn what educational opportunities may improve the quality of their life. We want to financially support AYA Cancer Survivors to participate in clinical trials. (Knowledge is power when it comes to finding the best treatment possible.) We can also provide financial support for AYA’s to attend conferences similar to the Young Adult Alliance Conference in Austin, TX. We know how important it is to connect with others who have had similar experiences.

In 2011 we held our Second Annual “Take a BITE out of AYA Cancer” Fundraiser. Over 450 people attended to support AYA Cancer survivors! We also helped send two AYA Cancer patients to the NCI (National Cancer Institute) to participate in a study to learn more about their Graft v. Host Disease. It is our desire to send more AYA’s to the NCI to participate in Clinical Trials.

We are also collaborating with Oncology Professionals, Families, and PAYA (pediatric adolescent and young adult) Cancer stakeholders in NE Ohio to establish a partnership. We are in the process of creating a support network, cataloging resource information, parent to parent support, and instilling hope in the lives of all PAYA’s with cancer in NE Ohio.

For 2012 we intend to continue the mission we set up to accomplish. … We will Fight. We will Conquer. We will not rest until there is a Cure! Fightconquercure!

Visit us at: www.fightconquercure.com

Or email me at angiegiallourakisyahoo.com

Thanks!

Angie Giallourakis

Founder

The Steven G. AYA Cancer Research Fund