Brooke Desserich, co-founder of The Cure Starts Now Foundation: Brain cancer is one of the deadliest of all childhood cancers. Every nine minutes a child is diagnosed with brain cancer and every hour four of those children lose their battle. Brain cancer is also one of the few cancers that is not enjoying a rise in the survival rate. Elena's type of brain cancer was called a DIPG [diffuse intrinsic pontine glioma] and is extremely rare and extraordinarily deadly with only about a one to 10 percent chance of survival.

After talking to endless doctors, we have come to realize that pediatric brain cancer holds a unique quality. Most doctors agree that a cure for brain cancer is likely to serve as a catalyst to curing almost all kinds of cancer, both pediatric and adult. In learning this, we have decided to try to flip the cancer research community on its head and ask them to focus on the deadliest of cancers, not the one that affects the most people because if we can find a cure for the "biggest bully on the block" we will likely see the benefits with all other types of cancer. This is a very exciting reversal in strategy and is really stirring up excitement among doctors.

Cincy Chic: What made you and your husband start an organization with the focus of finding a cure for this terminal illness even as you knew that your efforts would not be able to save Elena?

Desserich: The Cure Starts Now was actually started by the community of Cincinnati. While Elena was battling brain cancer, we received numerous letters asking to do something for Elena. We never needed the money for medical care, so we asked the community to instead give the money to research.

After Elena passed, there were already three fundraisers being planned by different people. We were incredibly moved to see the passion of the people involved. We sat down after Elena passed and talked about taking on the huge responsibility of the charity. We decided that if we were going to do it, we would put everything we had into it. We knew that with over four kids dying every hour from brain cancer, someone had to step up and make these kids' voices heard.

Cincy Chic: What strides has the foundation made in its mission to cure brain cancer?

Desserich: We are so proud of what The Cure Starts Now has accomplished in less than two years. Last year we funded one of the first research [studies] of DIPG tissue with St Jude Research Hospital. What is most exciting about this is that in the past, this particular type of brain cancer has never been analyzed, so we could attack the cancer in the best possible way. It will allow us to stop shooting in the dark with treatments for these kids like Elena.

Last year we also funded a ground breaking experimental treatment at Cincinnati Children's Hospital for high-grade brain cancer. The drug that is a part of this study is very promising, and we were ecstatic to work with Cincinnati Children's Hospital to craft this study. We have entered our second funding cycle, and are receiving research grant requests from all over, and we are eager to continue to fund research for these kids so that no other child needs to face what Elena went through.

Cincy Chic: Elena's story has reached beyond the Tri-State and has touched a national audience on "Good Morning America," the "Today" show, Parenting magazine, AOL's ParentDish and Woman's World magazine. What does this coverage mean to you and for the foundation?

Desserich: Just this month marked two years since Elena lost her battle with brain cancer. Yet, every day, through The Cure Starts Now and her story (which is now a book), she continues to inspire so many people. A few months before Elena was diagnosed, my husband and I watched the kids play on the playground. I commented how I couldn't wait to see what Elena did in life. Unfortunately that life ended way too soon. But in that short life and for the years following, she seemed to inspire so many friends, families and strangers.

But we continue to be reminded that Elena is also one girl out of thousands of kids diagnosed with brain cancer. Each one of these kids is amazing and inspires so many people with their strength, determination and humility. All of these kids, including Elena, are teachers in living life with fearlessness and joy.

Cincy Chic: Your family's journal of the journey from Elena's diagnosis has been published in Notes Left Behind to spread awareness and benefit the foundation. Tell our readers more about the national and international attention the book is and will be receiving.

Desserich: After the book was covered by "Good Morning America," we were approached by several publishers to re-release the book nationwide. We chose HarperCollins because we felt as though they would maintain a level of integrity in re-telling her story as well as realize that this story was more than just about one girl, but about the thousands of people she inspired to fight for the cause that has been long ignored.

On Oct. 27, the book will release in the United States and worldwide. HarperCollins is excited to bring the story and The Cure Starts Now to the national stage. A portion of the proceeds of the book will go right back to the charity, which will likely result in an amazing opportunity to fund more research that we ever dreamed possible. In addition we will be traveling quite a bit to help promote the cause and the book. I cannot tell you how much it means to us, and all the other families battling brain cancer, to finally have an opportunity to increase awareness and tell the amazing stories of these children.

Cincy Chic: I have tasted a delicious way to support the foundation, so just how can readers treat themselves to giving? And what other ways can they support the cause besides purchasing Notes Left Behind?

Desserich: There is so much that can be done to support brain cancer and The Cure Starts Now. We are happy to announce that we have over seven new chapters in different states, including Australia. People's willingness to take the cause across the nation and help these kids has been nothing short of amazing.

In Cincinnati, Graeter's has partnered with CSN to offer their Elena's Blueberry Pie Ice cream, and a portion of the proceeds go back to brain cancer research. So buy a pint when you are in the stores or at Kroger. We are also raffling off a $25,000 kitchen remodel with tickets available online at www.TheCureStartsNow.org.

We also welcome everyone to join us on Oct. 27 at the Rookwood Joseph Beth to kick off the release of the book and enjoy some desserts and drinks. This is free to the public and is our way of thanking everyone in the community for being such amazing supporters of Elena and The Cure Starts Now. There are endless ways to help, and I encourage everyone to go online and see the ever expanding list of events.

Cincy Chic: Even though Elena was the one with cancer, you also are a survivor. As this is our Survivorship issue, what advice do you have for women struggling with a tragic battle?

Desserich: Every day I talk with parents who are facing the same battle as we did. You can forever ask yourself, "Why my child?" I don't know if I will ever know the answer to that question, and I don't dwell on asking "why" anymore. Instead we have chosen that, even though Elena is not a "survivor" her inspiration survives past her death in myself and this charity. Her strength and joy survives in each one of our volunteers every day we spread awareness and raise funds.

Life certainly did not deal me the cards I expected, but I will make the most of what I have and try to effect a change in other kids' lives. To me, this is the only way I can see to honor what Elena gave to me.

Cincy Chic: What is your favorite thing about Cincinnati?

Desserich: I have continually said that The Cure Starts Now would never have been successful if it wasn't for the amazing people in Cincinnati. The people in Cincinnati are so caring and so giving. I have never been in a city where people give so much beyond themselves. The outpouring of support for our family in the past years has been phenomenal and we owe so much to our friends in Cincinnati.

PHOTO CREDITS
Photos courtesy of Brooke Desserich

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