Dearest Elizabeth,

Can it be that today you would be 25? So hard to believe. It’s even harder to accept that this is the fourth birthday without you. We still think of and miss you everyday.

Our greatest fear is that our memories will fade and that others will forget. In the last few weeks our fears of others forgetting have been muted by so many acts of kindness and remembrance. Thank you all. Elizabeth, clearly your capacity for friendship and courage in facing the worst had an Impact. We take comfort in the knowledge that your short life was well lived.

We still wait for signs from you. In recent days we have seen several “sun dogs” on the ski slopes. We call them “sun Angels”. Each time we see one, we think it’s a kind of wink, smile, or kiss from you.

We never ask ourselves “why” you were the unlucky one who got this awful, deadly brain cancer. However, we do dare to wonder, “What if there had been better treatment options or a cure?” IMAGINE…….

We know a cure was your dream up until the very end. Please be assured that we and so many others share and are committed to that vision.

Love, Mom and Dad

P.S. We know that many are disappointed that we are not hosting the EH Party this Spring. Stay tuned, as we are a planning a party in the autumn to celebrate the 5th anniversary of Elizabeth’s Hope. No Elizabeth–we could never forget you. Memories and your spirit bless us everyday.

In our previous update, December 2013, we shared how close Elizabeth’s Hope had come to raising its first $1 million, and we urged our supporters to help us reach that milestone. We’re both proud and humbled to say that we made it, thanks to you. We are dedicated to continuing our work supporting the Children’s Brain Tumor Project, and we are so thankful to know that you are behind us every step of the way. Thank you!

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 and supporting Dr. Greenfield’s vision and Elizabeth’s Hope.

September is Pediatric Cancer Awareness Month, represented by the color gold. Did you know that? We didn’t until two years ago, when we were at the hospital for Elizabeth’s treatment and the staff was giving out small gold ribbons. Why is it that we know pink ribbons stand for breast cancer but are ignorant about gold ribbons? Why is it that we parents, our children’s best advocates, have failed to create greater awareness and urgency for funding of new treatments for our children, who have decades of potential and contributions ahead of them? It’s not because we aren’t trying. It’s because the subject matter is raw and unpleasant. Pediatric cancer is on emotional par with torture, rape, incest, abuse, and poverty — subjects we would prefer not to discuss. It’s also a topic that makes us feel like failures. Thousands of children die and suffer each as a result of cancer. We feel helpless to stop the random killing of about 50 children each week (the equivalent of two classrooms) by a relentless serial murderer.

Pediatric cancer was not even on our radar screen three years ago. Sometimes we wish it weren’t now. Each time we hear of a child with a new diagnosis, we are knifed in the heart and relive Elizabeth’s nightmare. We would love to be innocent again, but we will never be.

Pediatric cancer is bad, but a rare inoperable brain tumor has to among the worst diagnoses. “Inoperable brain cancer” really means “pray for a miracle.” “Rare” means there is no treatment protocol and few clinical trials. A tumor in the brain means that the patient will be robbed of their physical, emotional, and intellectual abilities. Inoperable brain cancer is more than an inconvenient or painful disease.

Thus we continue the work of Elizabeth’s Hope, our daughter’s dream of a cure for rare and inoperable brain cancers. Elizabeth was admitted into hospice in October 2012, just 9 months after her diagnosis. We were told that she had a few months to live at most. She had started work on Elizabeth’s Hope in June, and we were anxious to launch the fund while she was still present. We launched in mid-November 2012. Elizabeth hung on. Dr. Greenfield paid her a bedside visit over the Christmas /New Year’s holidays. It was an important visit, but Elizabeth was sad when he left our home. She was disappointed because she’d had the innocent hope that he would come with the cure that very day that would free her from her steady decline.

In this day and age, it is shocking to us that the only hope for so many patients is a miracle. We know we can do better. We eradicated polio, got a man to the moon, made AIDS a chronic disease. A cure is possible. It’s about focus. We can do more for our innocent kids. So our task is to remain engaged in the effort, raising dollars for research and creating awareness.

Thank you all for supporting Elizabeth’s Hope. The fund has raised nearly $900,000 for the Children’s Brain Tumor Project research effort for rare and inoperable brain cancer. The team at the Children’s Brain Tumor Project, led by Drs. Souweidane and Greenfield, are focused, passionate, and making progress.

We dream of the day when there is no need for a CBTP. Until then, however, we will continue to raise dollars to support those devoting their lives to helping these innocent victims.

Elizabeth’s Hope owes its success to you. Thanks again for caring.

Read the Fall 2013 Children’s Brain Tumor Project lab update from Dr. Greenfield.

Before Elizabeth’s diagnosis, pediatric brain cancer was not something we ever thought or worried about. After traveling Elizabeth’s journey, however, we have become passionate about this issue. Some sobering facts:

• Each year 4,200 children in the U.S. are diagnosed with a brain tumor.
• The causes of pediatric brain cancer remain a mystery, and thus there are no known preventive measures.
• Brain tumors are one of the deadliest forms of childhood cancer, and one of the costliest in terms of lost potential: Each death represents a loss of approximately 70 years in life expectancy.
• Pediatric brain tumor survivors are likely to suffer permanent physical, intellectual, and emotional challenges that will adversely impact the quality of life into adulthood.

Each case of childhood cancer is hugely tragic. Many young brain tumor victims are diagnosed early in childhood; they suffer difficult surgeries, isolating hospitalizations, and poisonous and debilitating treatments, only to succumb. The emotional strains on parents and siblings are intense, and a cancer diagnosis can be financially ruinous for a young family. Elizabeth lost the opportunity to live a full life because of her cancer. While she enjoyed 20 full years and may not have suffered as badly as some, her passing is tragic and unfair.

Early in her illness, Elizabeth was told that she was in the fight of her life — but that there were few treatment options for her disease. She knew that the only hope for victims like her would come through research. While she could not return to school or work, she did have an important purpose: to support brain cancer research to improve treatment options through better understanding of this horrific disease.

We are grateful for your support of Elizabeth’s and Dr. Greenfield’s goal of improving treatment options for young victims of brain cancer, and of unlocking the genetic secrets to these terrible tumors. Thanks to your support of Elizabeth’s Hope and the Children’s Brain Tumor Project, we have laid the groundwork for a national gliomatosis cerebri registry, which will extend our reach across the country and bring hope to every child and every family facing this horrible diagnosis. Already, every child diagnosed with a brain tumor at the Weill Cornell Pediatric Brain and Spine Center has that tumor genetically sequenced, an important first step in better understanding the disease. Soon, we hope every child in the United States who is diagnosed will become part of the project through the GC registry. Thank you again for your unwavering support of Elizabeth’s Hope.

Read the Spring 2013 Children’s Brain Tumor Project lab update from Dr. Greenfield.

Please consider making a gift now. Click here to make a secure online donation.

Dear Friends and Supporters,

The process of grieving and recovery is like falling into a deep dark hole and feeling lost, sad, and lonely. Eventually, you figure how to climb out of the hole, only to fall back in. The goal is to be able to walk around the hole without in slipping in again. We are making progress thanks to the support of so many friends (Liz’s and ours) and family. Certainly, Elizabeth’s Hope has been important in alleviating our feelings of powerlessness against a horrific serial killer of random children, pediatric brain cancer. Elizabeth’s Hope has also provided us many opportunities to make new or renew connections with friends of Elizabeth and people who want to help to find better treatments for brain cancer.

It’s been a busy fall. Thanks to friends of Elizabeth who held fund raisers at Williams College, Georgetown University, The University of Virginia, and Gettysburg College, Elizabeth’s Hope has received over $10,000 in contributions. There are more in the works. The energy and commitment of these young people are so inspirational!!

On October 13, our family was able to walk around the “grief” hole thanks to the outpouring of support at the 10K run in Prospect Park in Brooklyn, New York, spearheaded by Tessa Naso and Liz Haughton. Well over 200 attended in support of the cause, most ran, a few walked, and a couple cheered. It was a gorgeous sunny autumn day, filled with energy and love for Liz. Incredibly, the event raised over $46,000. The day ended with a party at the Saloon in NYC, where friends gathered and celebrated to raise yet more funds for the cause. The day was a huge success and there is a general call to make it an annual event!!

Through this journey we have made new friends; parents, patients, and children whose lives have been turned upside down by brain cancer. Take a look at “The Power of Families” to meet some of the families who have joined us in this campaign.

It’s been just one year since The Children’s Brain Tumor Project and Elizabeth’s Hope were launched. We are so excited as Dr. Greenfield’s team is making a contribution to the scientific and medical community and the fund raising effort is strong and continues to broaden. The point of all this is to say thank you for supporting Elizabeth’s cause and legacy, Elizabeth’s Hope. We have momentum, and I do believe that together we can make a difference.

Mike and Emmie

Read the Fall 2012 Children’s Brain Tumor Project lab update from Dr. Greenfield.

Please consider making a gift now.
Click here to make a secure online donation.

Dear Friends and Supporters,

It was just over a year ago that Elizabeth and we decided to join Dr. Greenfield in pursuit of his long-held goal to make a difference for children and adolescents with inoperable brain cancer — to eventually offer real hope to other young people who receive these difficult diagnoses. By November, the Children’s Brain Tumor Project (the research project) and Elizabeth’s Hope (a funding mechanism) were launched. Elizabeth lived to see the project become a reality.

We are so grateful for the initial outpouring of support. We have raised over $500,000. So many people have given. Most satisfying are the number of generous, creative people who have stepped forward to organize events or sell products for her cause. Our early success gives us confidence, and we want to maintain the momentum.

Knowing that tremendous strides are being made in the treatment of many adult cancers, while watching a child relentlessly attacked physically, emotionally, and intellectually by brain cancer and ultimately succumbing is devastating. However, believing we can ultimately make a difference for other children like Elizabeth inspires us. There is so much to be done. We feel privileged to have you join us.

With heartfelt gratitude,
Mike and Emmie, Trey and Will

Read the Summer 2012 Children’s Brain Tumor Project lab update from Dr. Greenfield.