Neuroblastoma Battlefront News
Transcription
Neuroblastoma Battlefront News
Neuroblastoma Battlefront News Fitzgerald Cancer Fund (FCF) is Battling Neuroblastoma BETTER! Fitzgerald Cancer Fund (FCF) Volume 1, Issue 1 November 21, 2012 Inside this issue: Shop for gifts at Arts and Artifacts Auction Find gifts for friends and family at our first annual online Arts and Artifacts Auction December 4th thru December 8th. All money raised will go to grants for families of children battling neuroblastoma. We have collected unique items donated by artists, collectors, businesses and individuals nationwide, including some from “4Miles 2Memphis” - a store owned by Danielle Col- by Cushman of the History Channel’‛s “American Pickers” and lovingly donated by Danielle’‛s mom, Sue. Shop for a cause this holiday season and give twice with every gift. Visit our website— www.FitzgeraldCancerFund.org/ aaa.html — for more information and to link to the live auction on December 4th thru December 8th. Internal Revenue Service awards FCF 501c3 status The Fitzgerald Cancer Fund, Inc. officially incorporated in Massachusetts on April 29th, 2012. FCF was accepted as a 501c3 publicly supported charity on August 7th, 2012 All donations made on or after the April 29th incorporation date are tax deductible in accordance with section 170 of the IRS tax code. FCF Launch Event Pg. 2 Newsletter Pg. 2 Child of Month Pg. 3 Meet the Board Pg. 3 December Calendar Pg. 4 Upcoming Issues: Learn about natural treatment options for neuroblastoma Find out more information about the FCF family grant program FCF Today Show Launch Event in NYC Standing in Rockefeller Plaza, Fitzgerald Cancer Fund (FCF) board members and supporters officially announced its creation on live television on June 28th during the Today Show. Volunteers lined the plaza with photos of children battling neuroblastoma (NB Warriors), those who had died from it (NB Angels), and survivors (NB Survivors). Viewers could see the posters during the segments filmed outside on the plaza. Al Roker spoke with FCF President, Kezia Fitzgerald, and her husband about their daughter’‛s battle with neuroblastoma and FCF’‛s mission to battle neuroblastoma better. TOP PHOTO: Volunteers stand in Times Square with photos of children who have survived neuroblastoma, died from neuroblastoma or are currently battling neuroblastoma. BOTTOM PHOTO: Elmo rests on the boxes of supplies while Kezia Fitzgerald prepares for volunteers to arrive. Kezia brings Saoirse’‛s Elmo doll with her on trips, because he was one of Saoirse’‛s favorite cartoon characters. After the show, volunteers marched from the Plaza to Times Square holding the posters from the show and handing out fliers about neuroblastoma and FCF’‛s first official fundraising campaign (Make Coffee, Make Change). Contribute stories and ideas for future monthly newsletters Starting in January 2013, FCF will publish a monthly newsletter on the 1st of each month. Each newsletter will contain a biography of a child battling neuroblastoma, ideas for how readers can help, information about FCF activity during the past month, and upcoming FCF events. If you would like us to feature your child or have suggestions for our newsletter, please email us at info@fitzgeraldcancerfund.org with a brief description of the information and/or photo you would like to see included. For more information about hosting a fundraising event for potential inclusion in the newsletter, please contact us. Page 2 Ways You Can Contribute to the FCF Newsletter Child with Neuroblastoma: If you have a child battling neuroblastoma who you would like to see featured in the newsletter, please email their name, a brief description of the child, and his/her legal guardian’‛s contact information. Fundraising and Awareness Events: If you have personally hosted, or will be hosting, a fundraising event to raise awareness or funds for FCF, we would love to hear about it! Send us photos and/or details from the event to feature in the newsletter to inspire others. For more information about hosting a fundraising event for FCF, please contact us. Article Ideas: Email us with your suggestions for articles to include in the newsletter. Neuroblastoma Battlefront News Saoirse Fitzgerald: November’‛s child of the month Saoirse is the inspiration for this foundation. The photos, videos, and information her parents shared during her journey inspired thousands to do something about childhood cancer. In April 2011, Saoirse mysteriously developed two black eyes, was vomiting, and not acting like herself. Her parents rushed her to the emergency room. After weeks of misdiagnosis, Saoirse was diagnosed with neuroblastoma at 11-months-old. Saoirse was declared NED (no evidence of disease) after her induction therapy. Just two weeks later, the doctors discovered neuroblastoma had returned to her bone marrow. Although they hoped a high-dose round of chemotherapy would clear her marrow, the relapsed disease spread rapidly. Sadly, Saoirse died from neuroblastoma on December 13, 2011. Saoirse’‛s spirit will live on in those who remember her, and FCF will continue to Battle Neuroblastoma BETTER in her memory. FCF will feature a child who is or has battled neuroblastoma in each newsletter. If you have a child you would like to see featured, please email FCF at info@fitzgeraldcancerfund.org. Meet and greet with Fitzgerald Cancer Fund board members Q: How did you learn about neuroblastoma? than a year older than Saoirse, so it really affected me. Kezia: I heard the word “neuroblastoma” for the first time Audra: My brother died from neuroblastoma 42 years beon May 5, 2011—the day Saoirse was diagnosed. Paul and Emily are close friends of mine, and both were incredibly helpful throughout Saoirse’‛s and our journey with NB. Paul: I had heard about NB for years and only knew it was fore Saoirse, just after his third birthday. Once NB impacts your life, it never leaves you. Q: What do you personally hope to accomplish? Kezia: My dream is to find a cure for NB that allows chila rare childhood cancer. I didn’‛t realize the devastation of dren who have been treated to live long, normal lives withthe disease until Saoirse was diagnosed. out lasting side effects from toxic treatment. Courtney: I saw an article on CNN about Kezia and Saoirse Audra: Me too. Also, as my mother once recalled to me battling cancer at the same time. I have a daughter less that thanks to neuroblastoma ’‛we had no home, no money and no hope’‛ at the time, I would like to help ease some of the burden that neuroblastoma families face. Emily: Watching Kezia and her family through every step of Saoirse’‛s battle was one of the most painful things I have ever experienced. There are so many families who do not have a strong support system and who are terrified, heartbroken, and confused by the world they are suddenly thrown into when their child is diagnosed, so in addition to a cure, I hope to show as many families as I can that someone is caring about them and fighting for them. Paul: I want to ease the burden on families dealing with NB, teach others about this disease, find a cure, and make a positive difference in the lives of those affected by NB. Board members (left to right): Emily Reynolds, Paul Franklin, Audra Boudreau, Kezia Fitzgerald, Courtney Rasey Volume 1, Issue 1 Courtney: I just want to know that I’‛ve done what I can to make a difference for NB children and families. Page 3 Fitzgerald Cancer Fund Fitzgerald Cancer Fund P.O. Box 61 Danvers, MA 01923 We are a recognized 501c(3) publicly supported charity. Our goal is to Battle Neuroblastoma BETTER! E-mail: info@fitzgeraldcancerfund.org Money raised will be allocated to four different aspects of support: Battling Neuroblastoma BETTER! 1) Monetary grants to neuroblastoma patients and families who need funds to assist with medical and living expenses. 2) Contributions to research trials and new treatments and therapies for neuroblastoma that are less toxic and focused on high quality of life for patients. 3) Develop programs that educate doctors about the early signs of the disease and how to detect it at earlier stages. 4) Help families through the process of treatment by developing and providing parent advocates to answer questions, assist with understanding and assessing treatment options, and provide information and support. he web! We’‛re on t .org d CancerFun Fitzgerald December 2012 Sun Mon Tue Wed Thu Fri Sat 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 FCF Online Auction Begins FCF Online Auction Ends
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