Remembering Allie Fisher

Posted in Children's Brain Tumor Project Families

Kyle and Kelly Fisher of Overland Park, Kansas, became reluctant members of the Children’s Brain Tumor Project this summer, when they lost their three-year-old daughter, Allie, to gliomatosis cerebri. Allie passed away less than three months after her first seizure, so her family was still reeling from the shock of her diagnosis at the time of her death. Still, they donated Allie’s tumor to the Children’s Brain Tumor Project to help advance the science and lend a hand in the fight against gliomatosis cerebri and other terrible tumors. The Fishers’ community came together in love and support and held a neighborhood fundraiser called “Allie’s Garage Sale,” which they hope will become an annual event to support the Children’s Brain Tumor Project. Allie’s dad, Kyle, says, “We loved the three short years we had with her and miss her dearly. It brings us great joy to see the positive impact Allie had on people and is continuing to have via her tissue donation and fundraising for the Children’s Brain Tumor Project. We are hoping that the $4,500 raised via Allie’s Sale is only the beginning.” All of us at Elizabeth’s Hope and the Children’s Brain Tumor Project mourn Allie’s loss and welcome the Fishers and their friends and family to what one mom recently called “the worst club in the...

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Events Update December 2013

Posted in Events

September brought events for Pediatric Cancer Month along with more campus events for Elizabeth’s Hope. We are grateful that so many of our Campus Ambassadors are helping pass the torch to the next generation of Elizabeth’s Hope supporters. A big thanks to Lilly Santoro for serving up the Second Annual Mixed Doubles Tennis Tournament for Elizabeth’s Hope at Gettysburg College in October. The tournament was initiated last year by Elizabeth’s friend Erin Hackett, who generously helped Lilly take the reins of what we hope will be an annual event. This event is especially meaningful to us, since tennis was Elizabeth’s sport. Thanks, Erin and Lilly, for carrying on this tradition in her name. Many thanks to Brenda Ries in New Jersey and her sister Angela Moore in Kansas for an extremely active September! Angela is COO of eScreen, which made the Children’s Brain Tumor Project the beneficiary of its company-wide fundraising campaign. Brenda and her son Sean have been tireless advocates for pediatric brain tumor research, and they led the GOLD OUT campaign at sporting events in September. At one game Sean released golden balloons, each of which bore a tag with the name of a child who lost the battle. Sean’s balloons honored Caitlin, Ty, Bizzie, Brooke, Juliana, and Elizabeth. We are so grateful for this family’s support! Thanks to our friend in Louisiana, Kathleen Clark of “What’s YOUR Fight?” for organizing the Second Annual Tailgate Saturday on October 12 at the LSU Parade Grounds in Baton Rouge. Last but not least, a very special thanks to our running friends, including Emily Kuschnar of Team Zachys, who ran in the October 13 Westchester Running Festival to support the Children’s Brain Tumor Project, and Caitlin Hudson, who ran the New York Marathon on Fred’s Team to benefit research at Memorial Sloan-Kettering Cancer Center. See previous...

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Children’s Brain Tumor Project Lab Update: December 2013

Posted in About the CBTP, Research, Updates

By Jeffrey Greenfield, MD, PhD Director, Children’s Brain Tumor Project It’s hard for me to believe that two years have gone by since Elizabeth’s Hope was born, allowing us to launch the Children’s Brain Tumor Project. In scientific research terms, this has been the blink of an eye. I am so very grateful for your support—this truly is a dream come true for me, and some day we will be able to make a significant impact on the care of children facing brain tumors. Anniversaries always make you look back and think about where you’ve been, and our list of accomplishments over the past two years is considerable. Here are some of the highlights of our first two years: 2011-2012 Elizabeth’s tumor was the very first sample of gliomatosis cerebri ever subject to genomic analysis, and it yielded a treasure trove of information about the genetic mutations associated with her tumor. Since then we have been able to sequence several additional tumors, searching for what they have in common with Elizabeth’s, and where they diverge. This hunt for patterns and data is what will help us unlock the mystery of this rare tumor. Only weeks after Elizabeth’s Hope was founded, my colleague Dr. Mark Souweidane received FDA approval to begin a groundbreaking trial testing the safety of convection-enhanced delivery (CED) of therapeutic agents for pontine gliomas (DIPG). He treated the first patient in May of 2012 and has treated eight more children since then, with zero toxicity. Testing different agents, at different doses, will generate the data we need in the coming months and years. In the fall of 2012, a basic science researcher named C. David Allis, Ph.D., was investigating and documenting a DNA histone called H3.3. Much to everyone’s surprise, it was discovered that H3.3 mutations are found in pediatric gliomas. Dr. Allis and I are now collaborating on a new project to try to find out why the mutation causes gliomas — including gliomatosis cerebri — to develop. I was honored to share in a Starr Cancer Consortium grant given to Dr. Allis to pursue the research. I have a two-year, $112,000 grant for 2013 and 2014. 2013 In January 2013, the Institute for Precision Medicine opened its doors at NewYork-Presbyterian/Weill Cornell Medical Center. This cutting-edge research hub is exploring how to develop optimal targeted, individualized treatment based on each patient’s genetic profile. This is extraordinarily significant for Elizabeth’s Hope and the Children’s Brain Tumor Project, as it brings the ability to sequence tumors right onto our campus and spares us the cost of buying new machinery. Our gifts can be used for the bioinformatics staff members we need to interpret the data, rather than on...

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Family Update: December 2013

Posted in About EH, From the Minter Family, Updates

Two years ago this month a seed was planted: Elizabeth’s Hope. Over the last two years thousands of supporters have nurtured that seed with their time, talents, and money. Today, having raised more than $900,000 and with the million-dollar goal in sight, Elizabeth’s Hope is the founding root of the Children’s Brain Tumor Project. The project’s fundraising is flourishing with more families (14 at last count) powering the project, creating more roots, widening the base and securing a larger, continuous source of funds to nurture this important research mission. (Please read Dr. Greenfield’s lab update, where he outlines the initatives of the last two years.) We miss Elizabeth deeply and wish that she were here to witness what has been accomplished. The love of her friends, family, communities, and strangers allowed her seed to grow. As we celebrate the two-year anniversary of the fund’s launch, we want to thank a number of people who were critical to the fund’s early success. First, we are indebted to Dr. Greenfield for sharing his medical vision with us. We feel blessed to have been presented an opportunity to work with him, during a time when we felt desperately hopeless. Second, we want to thank our friends at Weill Cornell, Licia Hahn and Roseann Henry, for their strategic thinking, marketing advice, and operational support. Third, we thank Tessa Naso, our Volunteer Coordinator, who energized our fundraising with our first big event and continues to generate ideas. Fourth, we are indebted to Gretchen Scott, who designed and sold thousands of Elizabeth Hope’s blouses, donating an incredibly generous 100 percent of the proceeds. Finally, we acknowledge the youth — middle school, high school, and college students, as well as young adults — who continue to give our effort a unique momentum. There were many “hidden blessings” in Elizabeth’s journey. She brought our family closer together. She taught us the meaning of unconditional love. She taught us to focus and appreciate the moment, and worry less about the future. There have also been hidden blessings in the establishment of Elizabeth’s Hope. In addition to allowing us to focus on something positive as opposed to dwelling on a devastating diagnosis and loss, the Web site and Facebook page have connected us with other parents coping with the same fate. Finally, we are inspired by the generosity, creativity, and compassion of friends, neighbors, and strangers. We are proud to be associated with the Children’s Brain Tumor Project. The project now has a solid foundation. However, a true success will require years of continual funding. So our work has just begun. We hope you will consider Elizabeth’s Hope when planning your year-end charitable contributions Thanks again for believing in...

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