Events Blog

  • 8 Oct

    Karaoke for the Kure in Vegas – a ton of fun!

    2014 was our first year in Las Vegas for Karaoke for the Kure! We had a blast throughout the evening, with 150 people in attendance and some amazing singers and supporters enjoying the perfect weather.

    Founders and friends!

    Founders and friends!

    As our first outdoors Karaoke for the Kure event, Container Park (located in the Downtown Project, brainchild of Zappo’s CEO Tony Hsieh) was incredible. Their team contributed to a beautiful setup, and the space itself was really cool. An entire shopping area built from shipping containers!

    Karaoke for the Kure is a fun event every year, but we had a host of performers and entertainers show up this year who really rocked the stage. Ray Toro, formerly of My Chemical Romance and working on a solo project, brought his whole family out (thanks, and great meeting you!) to the event. He even jumped on stage to perform a My Chemical Romance song with a young fan, and another with a not-quite-as-young fan, our friend Ryan from Denver.

    Las Vegas headliner Frankie Moreno showed off his harmonica chops, and we had a great duet from felix and Kjay Cavali.

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    Our host for the evening, Jeff Civillico, was excited and energetic, speaking passionately about Because of Ezra, and yes – enjoying the karaoke.

    Childhood cancer is serious, and needs our attention. We throw these events as fun ways to come together around something horrible which we can stop. After losing Ezra, we will continue to do whatever we can to change our story for the next family.

    Every day, children are being diagnosed with cancer. The research we’re funding through your support is helping kids live longer today, and giving families hope. It matters. Thank you so much to everyone who came out to support Because of Ezra in our first year in Vegas. We’re looking forward to being back next year, and making an even bigger impact for children fighting cancer today and tomorrow.

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  • 13 Sep

    Karaoke for the Kure Raises Over $60k in Tampa

    We stopped by the Orpheum today to grab some of the things we left from last night’s third annual Karaoke for the Kure: Solid Gold, and their crew were setting up for a concert. The floors and walls were still covered in gold glitter.

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    Around 350 of our incredible Tampa supporters showed up yesterday decked in gold to celebrate Ezra’s life (Karaoke for the Kure is always held close to his August 31st birthday), honor incredible kids fighting cancer today and in the past, and help us fund childhood cancer research. The place was dashingly gold, representing the color for Childhood Cancer Awareness Month, which is September.

    You couldn’t even get in the door without passing our friend Bobby in a full body gold suit, giving out glitter bombs. What’s a glitter bomb? For $10 he’d cover you or a friend in gold glitter. Judging from the pictures everyone posted this morning, glitter bombs were a hit!

    Gold bracelets and the sound of Seattle natives Rockaraoke filled the packed house as our host, HOT 101.5’s Jayde Donovan, proved her passion for both finding a cure for neuroblastoma and delivering a near-flawless rendition of Snoop Dogg’s “Gin and Juice.” We craft Karaoke for the Kure with Ezra’s personality in mind; he danced every day, and loved making friends and singing. There’s really no way to sum up just how much fun “live band karaoke” is until you experience it.

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    Yes, childhood cancer is a tough truth to talk about, but we have a good time kicking it to the curb. We smile and laugh just as deeply as we cry. When you meet the families we’ve met, and see children fighting cancer, you know how serious this is. Our friends Dell and Laura Spiva shared about their son Tanner, his diagnosis of neuroblastoma, and how connecting with Dr Giselle Sholler changed their son’s life. He’s been in remission for two years now.

    Dr Sholler, who chairs the NMTRC (one of the research organizations we fund), was just one of many pediatric oncologists in the crowd, and she spoke of the powerful research they’ve been doing, which Because of Ezra and you are helping to fund. The results are honestly astounding. Although more than half of kids with neuroblastoma relapse, in the past two years not a single child at her home hospital in Grand Rapids has relapsed. This is working.

    Before Dr Sholler spoke, we debuted our latest video detailing just why we do this, and how much your support is needed. Watch it below, and please share!

    Our great friend Jesse Miller deserves a bigger thank you than will fit on this page for the work she put in, as well as Lindsay Tracy. You two ladies were instrumental in Karaoke for the Kure working. And of course, to all our volunteers keeping things running smoothly while the rest of us enjoyed the night – THANK YOU. Our decorations crew led by Djenee and Lauren made the place look #SOLIDGOLD. We are so grateful to all of you!

    With your help, we raised over $60,000 last night. We can’t wait for next year, and for Karaoke for the Kure in Vegas just two weeks from today. We were humbled and honored to see Tampa really show up this year, with some truly amazing volunteers, attendees, and organizations supporting childhood cancer research.

    Deliver Media and Laser Spine Institute brought nearly 30 people EACH from their teams! We also want to thank Senator John Legg and his wife Suzanne for coming by, and for believing so strongly in this need. Both the Rays and the Lightning wowed us (owner for a day?!?!?!? Congrats, Brenda!), and Brighthouse Enterprise Solutions and Grow Financial have both made impressive commitments to childhood cancer outside Karaoke for the Kure.  Fly Bar and Hill Ward Henderson have supported huge two years in a row now, and Florida Blue have been some of the most caring people we’ve met. Seeing Ezra’s face on billboards around Tampa thanks to Clear Channel Outdoor meant so much to us. To all our sponsors – your support strengthens our resolve and gives hope to families fighting childhood cancer today. Thank you.

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    To everyone who made it out last night, and to all those who were missed – thank you. Thank you for being a part of Because of Ezra. We do this for so many more kids than Ezra, kids whose lives really do depend on this work, and we simply could never do it alone. We need you, you are our village, and we love you all so much for being on our team. This matters. See you soon!

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  • 12 Sep

    Because of Ezra Featured on WFLA Channel 8

    Thank you so much to Stacie Schaible from Channel 8 WFLA in Tampa for featuring our story on WFLA!

    Bay area couple uses loss to help others

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  • 9 Sep

    Karaoke for the Kure on the Jamie Meloni Real Estate Radio Show

    Jamie Meloni and the crew at the Jamie Meloni Real Estate Radio Show were gracious to host us and discuss Karaoke for the Kure in Tampa.

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  • 8 Sep

    Karaoke for the Kure funds Childhood Cancer Research

    Kathryn Bursch featured Because of Ezra and spoke about Karaoke for the Kure on Channel 10 News in Tampa. Thank you!

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  • 7 Sep

    Ray Toro will Rock with You to Cure Childhood Cancer

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    We’re excited to announce Ray Toro (lead guitar player and co-founder of My Chemical Romance until their split in 2013) will be joining us at Karaoke for the Kure in Las Vegas! He’s taking a break from recording his solo album to jam with you and support childhood cancer research through Because of Ezra.

    By coming to Karaoke for the Kure in Vegas, you’re getting a once-in-a-lifetime chance to rock with Ray Toro. We’re raffling off the experience of singing a My Chemical Romance song with Ray backing you up! We’ll have MCR hits “I’m Not OK” and “Teenagers” in the roster. We’ll also have two MCR prize packs of a Ray Toro signed t-shirt, CD, and vinyl.

    It’s $10 per entry into the raffle. We’ll be randomly selecting 3 winners – two prize pack winners, and one grand prize of rocking with Ray at the event! Grab as many entries as you’d like in the registration form at becauseofezra.org/vegas. Purchase of a Karaoke for the Kure ticket is required. We’ll see you on the 27th in Vegas!

    Children just like Ezra are diagnosed with neuroblastoma and other solid-mass pediatric cancers every day. Because of Ezra seeks to fill some of the large gaps in pediatric cancer research funding and focus on these solid-mass cancers. Our goal is to raise money to support relevant research and clinical trials with physicians and researchers who can help make a difference in survival today. A huge thank you to Ray Toro for his generous support!

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  • 12 Aug

    This Week in Neuroblastoma – 08-12-14

    ”Unlike a lot of people, I don’t feel powerless. I know I can do something. But anyone can do something, it’s not about being special. It’s about deciding to do it-to dive into work for peace and justice and care for everybody on the planet” ~ Patch Adams. In loving memory of Robin Williams, a brilliant and funny man who fully supported children battling cancer.

    Here’s this week’s links…

    Kids – Why We Fight

    Zane takes fight up to cancer and on fifth round of chemo

    Zane Brown, 3, was diagnosed with neuroblastoma in May 2014 and is about to start his 5th round of chemotherapy. And through it all, Zane continues to fight with a smile on his face. Please keep Zane in your thoughts and prayers as his battle is just beginning. You can stay up-to-date with Zane’s progress by visiting his Facebook page at: https://www.facebook.com/Zanesjourney themorningbullentin.com.au.

    Non-Profits / Events / News

    Beauty queen Kendal Nicol raises cash for cancer charity

    Kendal Nicol is not just beautiful on the outside she is beautiful on the inside as well. At just 14 years of age, beauty queen Kendal, who is representing South Lanarkshire in the Crown and Glory Scotland event, has been out collecting donations for the charity and managed to raise £106.70 in Dobbies, Sandyford, and £100 at the Forge in Glasgow. All donations she receives will go to the Dean Puplett Appeal. The Dean Puplett Appeal raises money for children and their family who are battling neuroblastoma. Thank you, Kendal! Best of luck to you!dailyrecord.co.uk.

    Niamh cash to fund cancer research project

    Niamh’s Next Step is planning to give £150,000 towards a two-year project looking at new ways to kill neuroblastoma cells, the childhood cancer which Niamh died from in May 2012 after an 18-month fight. Niamh’s parents Sam and Chris are working with Professor Deborah Tweddle and her team at the Institute of Cancer Research at Newcastle University on this £300,000 project. To keep up to date with Professor Tweddle and her team’s research work, you can follow the blog at www.niamhsnextstep.com.northantstelegraph.co.uk.


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  • 30 Jul

    This Week in Neuroblastoma – 07-29-14

    And we’re back! We have a lot of catching up to do so get comfortable!

    Here’s this week’s links…

    Kids – Why We Fight

    Plainville family putting the crush on cancer

    While living in Florida, Malia Jusczyk, then 2, told her mother, Megan, her tummy wasn’t feeling well. Megan sought out advice from her pediatrician. Doctor’s believed Malia had a UTI, but after an ultrasound a mass was found in Malia’s abdomen which turned out to be neuroblastoma. The family immediately up and moved to Massachusetts so that Malia could get treated at Boston Children’s Hospital which is considered the best in the country at treating neuroblastoma. After 19 months of treatment and surgery, Malia was declared NED. Shortly thereafter, the “Malia Crushes Cancer” charity was founded. The foundation helps to raise awareness and work to improve the lives of children and their families living with neuroblastoma. To register or learn more about Malia’s story and other fundraisers visit, http://www.maliacrushescancer.com/. milforddailynews.com.

    Young Fishersville Girl Winning the Fight Against a Rare Form of Cancer

    Raygan Batton is just 2 ½ years old and has been battling neuroblastoma for about a year. Currently, Raygan is winning the battle! To help pay for her treatments, the Batton family started the Ray of Sunshine Festival in which over 3,000 people donated. This year, the family donated funds from the festival to the program at University of Virginia Children’s Hospital that saved Raygan’s life. Congratulations, Raygan!fox17.com.

    Brave Izzy battles back from cancer

    Isabelle “Izzy” Touhey (4) was diagnosed with neuroblastoma 2 years ago and is now NED! Izzy’s family have launched a fundraising challenge to thank the children’s hospital and Weston Park Hospital where she was treated. According to Izzy’s mom Kelly, “The challenge will continue for 267 days, the amount of time that Izzy was undergoing treatment. We are hoping people will get involved to walk, run, cycle or swim a collective 1,335 miles, five miles for every day Izzy had treatment, and that people will sponsor the challenge overall.” Visit www.teamizzybigthankyou.blogspot.com to find out more.thestar.co.uk.

    Truro parents fight back at neuroblastoma

    Breanna Fowler (7) was diagnosed with Stage IV neuroblastoma when she was 3 years old. Her mother Sarah said she didn’t think Breanna would make it to her fifth birthday. Breanna was the first for a new method of treatment, using antibodies to fight the spread of the disease. Breanna was blessed with this opportunity thanks to the James Fund which has provided more than $14 million to neuroblastoma research. Breanna is currently NED; however, she has had four relapse scares, one of which was an erroneous test showing the resurgence of tumors in her body. We pray that Breanna will fully be cured one day. To learn more about the fund and how to donate, visit www.jamesfund.com. trurodaily.com.

    Desi Cechin cancer battle: Surgery to be financed

    Since April, 5-year-old Desirae “Desi” Cechin has undergone four rounds of chemotherapy to help control her stage IV “high risk” neuroblastoma. Although the family has insurance their company will not cover 100% of Desi’s medical expenses. Through various community fundraisers, about $196,000 has already been raised to help the family cover any and all expenses not covered by insurance. Desi is scheduled for surgery at Memorial Sloan Kettering on August 21st. We pray that Desi’s surgery is successful. To learn more about Desi, please visit her Facebook page at: https://www.facebook.com/Believingfordesi .desertsun.com.

    Teenage cancer survivor will take part in neuroblastoma research at MD Anderson

    Lauren Bendesky is 17 years old and will be planning to travel from her home state of Florida to Houston to participate in an internship with pediatric oncology researchers at MD Anderson. She will be contributing to research on the very same type of cancer that she recently overcame-neuroblastoma. Lauren was diagnosed with neuroblastoma at the age of 14 and recent scans revealed she is NED! She has a bright future ahead of her and plans to go to medical school to become a pediatric oncologist. Best wishes, Lauren on all your future successes!khou.com.

    Non-Profits / Events / News

    Children’s cancer charity under investigation

    Families Against Neuroblastoma (FAN)is currently under investigation by the Charity Commission. FAN either has not been approved by or is not provided by the NHS. The organization came under investigation after several parents whose children are battling neuroblastoma were told that there were insufficient funds or that they were unable to access funds for treatment costs. In a statement, the commission said: “The regulator is investigating a number of concerns but its focus is a lack of a proper governance structure at the charity, and as a result the risks that may arise to the charity’s funds or other property.” We truly hope that everything gets resolved quickly.theguardian.com.

    Family gives £60,000 boost to cancer charity after boy’s tragic death

    Alexander “Lex” Strong was diagnosed with neuroblastoma on Christmas Eve in 2009. After his passing in January 2013, his family decided to donate Lex’s appeal money to the Neuroblastoma Children’s Cancer Alliance UK. The £60,000 will help other neuroblastoma patients. Bettina Bungay-Balwah, chief executive of the charity, said: “This hugely generous contribution will help us continue to provide better access to treatment for families affected by neuroblastoma. We hope Alexander’s supporters find some comfort in the knowledge that his appeal money will be used to help others facing neuroblastoma.”yorkshirepost.co.uk.

    Kindly Dublin footballers make amazing gesture to brave little Molly

    Molly McNally (5), from Balbriggan in Dublin, has been battling neuroblastoma since October 22, 2013. Before beginning her chemo tests revealed Molly had an unbelievable 82 tumor hot points on her skeleton, with the main tumor in her stomach. After 12 rounds of chemo, Molly was declared NED. On June 20, 2014, while attending a Dublin football game, her favorite player Paul Flynn spotted Molly and ran over to her with his teammates and the Delaney Cup the team had just won. It is truly amazing to see how supportive and loving the Dublin football team is towards Molly!breakingnews.ie.

    Isabella Santos Foundation Now Planning Silent Auction for Annual 5K Run in Charlotte

    The 7th Annual Isabella Santos Foundation 5k Run will be held on September 20, 2014. The non-profit foundation is in the process of planning a silent auction and raffle to be held at the race. They are currently looking for fun and popular items for the auction including LEGOs, as well as gift cards. To help create awareness and raise money for Neuroblastoma research, please visit http://www.isabellasantosfoundation.com/.digitaljournal.com.

    Jaxson Hinkens continues fight; friends plan benefit

    Jaxson Hinkens was diagnosed with Stage IV neuroblastoma in 2009 and his battle continues. Hinkens and his family are preparing to travel to New York for further treatment. Friends of the family have scheduled a benefit for Hinkens to be held from 11 a.m. to 7 p.m. on Oct. 5 at Game Day Sports Bar in Appleton.jsonline.com.

    North Paulding senior endures most of life with cancer

    Ansley Cochran has been fighting neuroblastoma for 14 years! Ansley continues her fight and is focused on attending Georgia Southern University or the University of Michigan after graduating high school next year with the goal of pursuing a career in childhood cancer. “I want to love and support these children while also working to find a cure,” Ansley said. Ansley is a true fighter and we pray that she will one day be cancer-free!neighbornewspapers.com.

    Bridge abseil for Mark to raise funds for Bradley Lowery

    Members of the Hartlepool Round Table are currently searching for daredevils to join them abseiling off the Transporter Bridge in Middlesbrough to help Bradley Lowery, who is battling neuroblastoma. Currently, £500 has been raised for the event. Middleton Grange Shopping Centre manager Mark Rycraft, who has organized the fundraiser, expects to raise £5,000 through the daring stunt that has been planned for September 14. Best of luck!hartlepoolmail.co.uk.

    501 Bar and Grill hosting fundraiser for family of 1-year-old Burton girl battling cancer

    A fundraiser was held on July 24th to help a Davison family whose 1-year-old daughter Gabriella Pittsley was diagnosed with neuroblastoma. On March 24, 2014, Ashley and Bill Pittsley found out that Gabriella was in stage 2B of neuroblastoma, meaning the tumor is in one area and found in the lymph nodes near the tumor. Funds raised from the event will go towards renovating the family’s home. To learn more about Gabriella, visit her Facebook page at: https://www.facebook.com/gabriellablastoma.mlive.com.

    Riding with a purpose: Pan-Mass Challenge cyclists pedal to fight cancer

    Meaghan Turner had an unconventional Sweet 16 birthday after she decided to host a fundraiser for the Pan-Mass Challenge. The 100 birthday guests donated about $1,600 in Meaghan’s name to the Jimmy Fund. Meaghan and her father will join up to 5,800 cyclists, including 298 from Worcester County, on Aug. 2 and 3 in the 35th annual PMC. What a beautiful gesture, Meaghan! For more information about the PMC, visit www.pmc.org.telegram.com.

    Concert for four year-old cancer patient Ebony Smith raises £1,000

    A star-studded concert and celebrity auction was held for 4 year old neuroblastoma fighter Ebony Smith. Ebony was diagnosed last July and has undergone 10 months of chemotherapy. Doctors say there is an 80 per cent chance that the cancer will return, and if that happens treatment will not be available on the NHS. The event raised £1,080 to help cover possible future expenses. To donate to Ebony’s cause, visit gofundme.com/8a1174.scunthorpetelegraph.co.uk.


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  • 19 Jun

    This Week in Neuroblastoma – 06-18-14

    “Children with cancer are like candles in the wind who accept the possibility that they are in danger of being extinguished by a gust of wind from nowhere and yet, as they flicker and dance to remain alive, their brilliance challenges the darkness and dazzles those of us who watch their light.” ~ Unknown

    Here’s this week’s links…

    Kids – Why We Fight

    Family hope for ‘miracle cure’

    Eddie Halstead-Stevens, 3, is suffering from neuroblastoma and his family has just been told there is no further treatment available in New Zealand to help their son survive the aggressive cancer that has returned to his body. Eddie was first diagnosed in July 2013 and recently relapsed in the beginning of 2014. Eddie was recently accepted to try a high-dose radiation therapy offered in Australia; however, the cost of treatment alone will cost the family $10,000, not including travel expenses. A page has been set up at: facebook.com/eddiescrusade, and donations can be made via: givealittle.co.nz/cause/eddiescrusade. Please keep Eddie in your thoughts and prayers.stuff.co.nz.

    St. Jude 2008 Honoree: Ally

    Ally Cameron of Murfreesboro battled back from neuroblastoma and won. After serving as the 2008 St. Jude Dream Home honoree, the 5th grader is now celebrating 9 years cancer free! Ally was only 1 year old when she was first diagnosed and her original outlook was bleak. The 2008 Dream Home was built and donated in Ally’s honor bringing in a million and a half dollars for more research at St. Jude to save even more children. Congratulations, Ally!fox17.com.

    Non-Profits / Events / News

    Gone but not forgotten

    After losing her son Devante to neuroblastoma, Rose Beckford has become determined to raise awareness and funding for the cancer that stole her son. Last year Rose, her family and friends raised more than £6,000 for neuroblastoma research and have several fundraisers planned for this year. For further details of Devante’s charity visit: www.deestrust.org.ukvoice-online.co.uk.

    Touch a Truck coming soon

    The 3rd annual Touch a Truck event hosted by Team 4 Hope is coming soon to North Saanich, BC, Canada. Team 4 Hope is a group of women spearheading the fight against childhood cancer by running and hosting fundraisers for Neuroblastoma research. The team was started in 2011 after founder Lisa Hopkins’ 14-year-old son Jordan celebrated his 10 year anniversary of his diagnosis of neuroblastoma. “Our team raised over $45,000 last year [during our fundraisers] which takes our grand total to over $200,000 over the past three years,” said Colette Hopkins, a team member, adding that the team gave out their first $50,000 grant last summer to a researcher at B.C. Children’s Hospital Foundation and will be giving out two more this year. Please visit www.team 4hope.com for more information on this and other fundraisers hosted by Team 4 Hope.vicnews.com.

    Childhood Cancer Survivors More Likely to Be Hospitalized: Study

    A new study has found that cancer survivors end up in the hospital more often than other people. The researchers looked at nearly 1,500 people who were treated for childhood cancer between 1975 and 2005, and a “control” group of more than 7,700 people who never had cancer. Over 10% of people who survived neuroblastoma or bone tumors during childhood were hospitalized five or more times during the follow-up period. Furthermore, hospital admission rates for neuroblastoma and bone cancer survivors were about two times higher than for people in the control group. To learn more about this study, please visit: http://www.cancer.net/navigating-cancer-care/children/childhood-cancer-survivorshipphilly.com.

    Man caught on tape stealing Jimmy Fund donation can

    A rather infuriating story has a great turn of events. Kenneth Happas was arrested by Somerville police and charged with larceny after being caught on surveillance stealing a Jimmy Fund donation can at Bull McCabe’s restaurant in Somerville, Massachusetts. There was around $200 in the can and was going to neuroblastoma research. However, once the theft was shared on Facebook, over $800 has come in for donation! Absolutely incredible!wcvb.com.

    Free flights help Peninsula patients access care

    Patient AirLift Services, PALS, is a nonprofit that arranges free air and ground transportation for people needing medical treatment. Earlier this week, PALS provided 8 year old neuroblastoma fighter Wes Pak his 44th flight after being diagnosed three years ago. PALS arranges about 200 free flights along the Eastern seaboard, from Virginia to Maine, using a network of volunteer pilots. For more information, go to http://www.palservices.org dailypress.com.

    Snapshot: The Dubs take time out to row in behind brave Merryn Lacy

    Although she is currently enduring her third cycle of chemotherapy for neuroblastoma, Merryn Lacy (5) paid a visit to Jim Gavin’s senior county training session this week. While at the training session, Dublin’s All-Ireland champion trio of Diarmuid Connolly, Michael Darragh MacAuley and Denis Bastick all took time out to show their support for Merryn. You can follow Merryn’s journey with neuroblastoma on Twitter at: @MerrynLacy or on Facebook at: https://www.facebook.com/merrynlacy. thescore.ie.

    Lemonade stand helps children in need

    An amazing group of 150 high school sophomores are taking part in a favorite summer time tradition, they are selling lemonade to support Alex’s Lemonade Stand as part of the HOBY Leadership Program. Alex’s Lemonade Stand Foundation was created in honor of a brave young girl named Alex Scott who died after a courageous battle with neuroblastoma. Past Alex’s Lemonade Stand events held by HOBY have raised about $1,500, and millions have been raised nationwide. To learn more about Alex and the Alex’s Lemonade Stand Foundation, including how to host your own lemonade stand, visit: alexslemonade.org kdlt.com.


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  • 6 Jun

    This Week in Neuroblastoma – 06-05-14

    What a positive and uplifting week! We have a couple promising treatments to share with you as well as many wonderful fundraisers taking place to either support current neuroblastoma fighters or in honor of those fighters who have passed. It’s always wonderful to hear stories of strangers being touched by the battle of a small child and their determination to raise awareness and funding for those children!

    Here’s this week’s links…

    Kids – Why We Fight

    Cancer treatments force distance between mother and 2-year-old

    2-year-old Zadee Lopez was diagnosed with stage IV neuroblastoma in April 2014. Shortly after the diagnosis, Zadee’s mother Ana found out that she was pregnant. Now, because of the cancer treatment, Ana is not able to kiss Zadee like a mother would nor is she allowed to change Zadee’s diapers or wipe away her tears. The effects of Zadee’s treatments could be fatal to her unborn little sister. This is unfortunately the ugly reality of childhood cancer. Please keep the Lopez family in your thoughts and prayers.lubbockonline.com.

    Anya’s ready to start ‘being a normal girl’

    Three-year-old Anya Bentham is looking forward to going swimming for the first time in her life following an extensive battle with neuroblastoma. After 18 months of treatment, Anya was declared NED from her doctors. Fundraisers were created to help cover both medical and travel expenses and the Bentham family says that they will continue fundraising and if Anya is still in the clear after five years the money would either be used to treat another child with the condition or for neuroblastoma research trials. You can support Anya’s appeal by going to www.facebook.com/AnyaBenthamAppeal and donations can be made at www.justgiving.com/appeal4anya.newsnorthwales.co.uk.

    East Lancs cancer battler Sam Shaw fights on

    Neuroblastoma fighter Sam Shaw, 5, has had his central line removed and has recovered from the procedure beautifully! According to his mother Christine, “He returned to school for the last couple of days of term before heading off for a much needed family holiday.” Have a great summer, Sam! Enjoy!lancashiretelegraph.co.uk.

    Non-Profits / Events / News

    MUSC awarded childhood cancer research grant

    Rally Foundation for Childhood Cancer Research (Rally), a national nonprofit organization is proud to award a $20,000 Rally for Research Grant to the Medical University of South Carolina (MUSC) to support Dr. Jacqueline Kraveka and her research on “Targeting Dihydroceramide Desaturase in Neuroblastoma.” The grant will be used to fund neuroblastoma research, more specifically, to develop and test inhibitors to the dihydroceramide desaturase enzyme in neuroblastoma. This grant is part of the $1.2 million Rally will be awarding to 34 hospitals across the country this year. To find out more about Rally, visit www.rallyfoundation.org.moultrienews.com.

    ‘Excellent’ survival in biology-based pediatric neuroblastoma treatment reduction

    Tumor biology-based therapy offers excellent outcomes among children with intermediate risk (IR) neuroblastoma (NB), according to results from a prospective phase 3 reduction of therapy study from the Children’s Oncology Group, presented at the 2014 American Society of Clinical Oncology (ASCO) Annual Meeting. As of now, there have been no deaths reported due to disease in patients with localized favorable biology tumors; however, there were a total of 20 deaths from all causes among patients with stage 4 neuroblastoma, but 3-year OS for patients with localized NB remained 100%. This is truly a promising therapy for neuroblastoma patients!oncologynurseadvisor.com.

    Bristol Children’s Hospital to trial cancer vaccine

    Researchers at MSKCC in New York City alongside doctors at the Bristol Children’s Hospital are testing a new neuroblastoma vaccine which works with the patient’s own immune system to help it recognize and destroy the cancer cells. The trial has been funded by two charities, Neuroblastoma Children’s Cancer Alliance UK (NCCA UK) and Joining Against Cancer in Kids (Jack). We look forward to seeing the results of this vaccine in the near future!bbc.com.

    GIVING BLOOD: Drive Honors Girl’s Memory

    Many lined up to give blood in honor of a seven-year-old who lost her fight with cancer. Camryn Storbeck suddenly passed away in April after battling neuroblastoma. Her school, Crestview Elementary, organized a blood drive in her honor when she relapsed for the fourth time in March. Crestview Elementary School also dedicated a tree to Camryn. What a beautiful way to keep Camryn’s memory alive.whotv.com.

    Savile Town mum pledges to keep child’s memory alive

    Yasmin Chhettri was only 3 years old when her 7 month battle with neuroblastoma came to an end. Her mother Liga has vowed that when the first anniversary of Yasmin’s death arrives in September, her grave will have a memorial stone in place. Liga says, “It has been really hard but a headstone is the only thing we can do for her.” Anyone willing and able to help Liga get a headstone for her daughter can email Liga personally at: [email protected] dewsburyreporter.co.uk.

    The Isabella Santos Foundation Announces Partnership with the Charlotte Hounds for ZERO K Run

    The Isabella Santos Foundation frequently holds various events and fundraisers throughout the Charlotte, NC community and has now partnered with the Charlotte Hounds, a professional lacrosse team, for ZERO K Run. The ZERO K is an event where participants don’t have to run! Now that’s my kind of run!! Proceeds will benefit The Isabella Santos Foundation. Registration for the event costs $25. To learn more about the ZERO K Run and The Isabella Santos Foundation, please visit http://www.isabellasantosfoundation.com/.digitaljournal.com.

    Charity fun day for Summer

    Summer Allen is a five-year-old girl who is battling neuroblastoma and a Fun Day Fundraiser is being held for her as her family is facing the limitations that the NHS have in treating this cancer in the UK. To learn more about Summer and the Summer Allen Appeal, please visit http://www.justgiving.com/summer-allen-appeal or you can donate by text by simply texting SUMM95 and your amount between £1-£10 to 70070.brighouseecho.co.uk.

    Cancer girl, 3, pays own tribute

    Sienna Riley, 3, has been battling neuroblastoma since she was 20 months old and paid her own tribute in memory of Stephen Sutton who recently passed away. Sienna posed for a picture posted online giving Stephen’s trademark thumbs up sign. Currently, the Riley family is raising funds to cover future medical costs and have since raised £17,000. To donate to Sienna’s medical expenses, please visit: http://www.gofundme.com/3j2cg4.maldonandburnhamstandard.co.uk.

    Coach’s request changes the way football players define family

    Justin Thompson, first-year Skyline head coach hopes to bring out the best in his players and the sport they love by changing the way his players define family. A player for the team mentioned 4 year old Ava Manwaring to coach Thompson and told him that she was fighting neuroblastoma. The team then went to the Manwaring home to see if there was anything the football team could do to help the little girl and her family where they met and instantly fell in love with little Ava. Since meeting Ava, the Skyline Eagles football team decided to host a dinner at the school which was held on June 2 to benefit Ava and her family. Thank you, Skyline Eagles for your love and support!deseretnews.com.

    Why I Relay

    Kaylee Bickford has written a beautiful essay as to why she participates in Relay for Life. Kaylee states that her older brother, Austin, was diagnosed with stage IV neuroblastoma at the age of 5. Austin relapsed twice and amazingly is still alive today! Please take a moment to read this heartwarming essay of a sister’s love, admiration, and continual support for her older brother. theleafchronicle.com.


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