Fight Like Emilie 2019 Year in Review

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Emilie is our amazing forever 10 year-old girl and best friend to her big brother Alex. During the summer of 2016 she began to have headaches while swimming. After an MRI on September 9th, we received the words no parent should ever hear, “Your child has cancer”. We quickly learned that she had a rare brain tumor called a Diffused Intrinsic Pontine Glioma (DIPG) which had no cure and that 50% do not make it 9 months after diagnosis. Emilie survived 14 months. During her battle she had surgeries in Shreveport, Memphis, and San Francisco. She endured many MRIs, countless needle pokes, 40 doses of radiation, and three phase 1 trial treatments. With courage beyond her years, she battled cancer with sass, humor, song, and an occasional dance under her many crazy hats. Finally, her fight came to an end at home on Halloween night, 2017 surrounded by family and friends.  On that night, she passed the baton to her family and friends so that we could continue her fight until the day cures are found for all children. 8 months later, around the time of her birthday, the Fight Like Emilie Foundation was born.

OUR MISSION

The Fight Like Emilie Foundation exists to support research, institutions/organizations, families, and initiatives, as well as to raise awareness in the fight to defeat childhood cancer.

2019 FINANCIAL AND ACTIVITY REPORT

Thanks to each of you we feel that we made an impact in the fight against childhood cancer in 2019.  During the 2019 fiscal year the Fight Like Emilie Foundation raised $13,748.37 from individual giving through Facebook, Amazon Smile, Give for Good, and monies raised through special events. Not bad for our first year. Of the $13,748 raised, we spent $13,034.18. Of that, we are proud to report that 82% ($10,684) went straight to performing our mission and 18% ($2,349) went to administrative costs. Now that this first year is passed, we can and will do better.

FLE Spending $13,034 total expenses Percent of expenses
Direct Family Support $8,050 61.8%
Childhood Cancer Awareness $2,634 20.2%
Administration Costs $2,349 18.0%

WHAT DID WE DO WITH FUNDS RAISED?

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ADMINISTRATION COSTS – Since this was our first year, we started off with some one-time administration costs that we could not avoid that included paying for our amazing website developed by Richard Creative. Those costs will be less for 2020 and beyond. As part of our responsibilities in running the organization, a good bit of our administrative expenses went to insurance. Absolutely no monies were used for salaries. This is a good spot to recognize our wonderful board and those who have volunteered their time and effort with us!

SUPPORTING FAMILIES – $8,050 went directly to supporting families. That means that nearly 62% of your support went directly into the hands of families who needed it most. We did this in two ways. First, we gave direct grants to 5 families that applied during the 2019 year. Community Foundation’s annual Give for Good had a significant impact for two of our families as we raised nearly $2,000 total and then added from our own funds to give each family $2,000. Secondly, between Christmas of 2018 and 2019 we sent out Amazon cards to children who were fighting this horrible disease. Of course, those cards were sent out from Emilie.

AWARENESS – 2019 was a great year for us in terms of working on awareness of childhood cancer.

First, it was the first year of our partnership with the intercollegiate debate competition organization, the International Public Debate Association (IPDA). In 2018, with the help and support of friends and the organization’s officers, childhood cancer became its official charity. The mission was for its participating programs to raise funds for their childhood cancer charity of choice. It is estimated that members of the organization raised nearly $20,000 in their first year giving to several different charities. The Fight Like Emilie Foundation awarded participating programs with plaques of recognition and individual participants with commemorative coins.  

Secondly, we made one of Emilie’s dreams come true. During her battle with cancer, she announced that one of her “bucket-list” items was to be in a parade. Thanks to incredible supporters, she and her brother rode in the 2017 Highland Mardi Gras parade. She had a blast. Prior to the start, she asked her father why there wasn’t a float for childhood cancer. I responded, “I guess we’ll just have to work on that”. That was Emilie’s last parade and she never got to fulfill that dream. As a family, we weren’t able to make that happen in the year following her passing. Well, in 2019 we did make that happen. Emilie’s float launched in the same Highland parade that made her wish come true. It was small, just a truck with decorations, but what made it really special is that our first rider was a precocious little girl who just had one of her eyes taken in order to “cure” her cancer. Everything was unicorn themed and everyone absolutely fell in love and awe of our first queen of our Emilie float. Lots of people donated beads and throws to give our queen an amazing experience. Selfishly, it also made Emilie’s dream come true for us.

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Thirdly, we made connections and partnered with some wonderful groups during 2019 to help raise awareness for the fight against childhood cancer. No monies from Fight Like Emilie were used in these efforts, but we are discovering how valuable partnerships are as we fight this foe.

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In partnership with the American Cancer Society Cancer Action Network, as father of Emilie and not as a leader of FLE, our Executive Director, Trey Gibson was sent to the Alliance for Childhood Cancer Action Days in Washington DC where we advocated for the childhood cancer fight. Thanks to Representative Mike Johnson, Emilie’s unicorn Elete and I were able to speak in front of many House representatives about her experience. It was a humbling, yet wonderful experience, and much was learned.

Likewise, we volunteered with the ACS CAN in Louisiana’s Cancer Day at the Capital in Baton Rouge. During that time, our story and presence helped get children included in palliative care legislation.

A PEAK AT 2020 AND BEYOND

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2020 has already turned out to be a unique year. COVID 19 has impacted and changed many of our lives. However, it has not changed our mission. To date, we have already supported two families. We have also significantly raised our game during this year’s Mardi Gras Highland parade. We partnered with Foster-Somerland who built our float and Audio Home Solutions who provided the trailer and sound equipment to create Emilie’s Castle. This time we had two cancer warriors and their brave siblings tossing beads and throws. You all overwhelmed us with donated throws this year and thanks to you our warriors had a great time. We continue our partnership with the International Public Debate Association and encourage donations to any organization that fights childhood cancer. In 2019, the Louisiana legislature created a Palliative Care Advisory Council. That council met for the first time in January of 2020. FLE’s Executive Director, Trey Gibson was appointed to serve. This is in no way tied to Fight Like Emilie, but certainly represents another avenue to help make a difference for all children, not just those fighting cancer. Finally, in addition to supporting families and raising awareness, we also hope, with your help, to advance our mission to support research again.

THANK YOU!!! THANK YOU!!! THANK YOU!!!

All of this would not be possible without your support. There is still so much to do. Unfortunately, every day children will be diagnosed and parents will hear those hurtful words, “Your child has cancer”. It is by far the scariest set of words. Every day we miss our little girl and that heartbreak we feel fuels us to do more. Please keep all cancer warriors in your hearts and please help us help them by donating and sharing that childhood cancer needs more awareness!

Donate at https://fightlikeemilie.org/donate/

Like us on Facebook at https://www.facebook.com/fightlikeemilie/