Events Blog

  • 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:

    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!

    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

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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,

    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!

    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 to find out

    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

    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:

    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!

    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

    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.”

    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!

    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

    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

    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!

    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!

    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:

    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

    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

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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:, and donations can be made via: Please keep Eddie in your thoughts and

    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!

    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:

    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 for more information on this and other fundraisers hosted by Team 4

    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:

    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!

    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

    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:

    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:

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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

    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 and donations can be made at

    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!

    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

    ‘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!

    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!

    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

    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:

    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

    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 or you can donate by text by simply texting SUMM95 and your amount between £1-£10 to

    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:

    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!

    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.

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  • 28 May

    This Week in Neuroblastoma – 05-27-14

    photo 4

    This is a very tough week. Two children have died from neuroblastoma this week alone and another child, who is very close to our hearts had scan results come back showing a few isolated neuroblastoma cells in his marrow. This is absolutely gut-wrenching, and shows we need to fight hard still for these children. Our thoughts and prayers are with all these families facing the unthinkable.

    Here’s this week’s links…

    Kids – Why We Fight

    Penelope’s Neuroblastoma Fight

    With an extremely heavy heart we must share that another neuroblastoma fighter has died. Penelope Davis was diagnosed with stage IV neuroblastoma on January 22, 2014, when she was just 11 months old. On May 22, 2014, Penelope suffered kidney failure just two days after she had surgery on her tumor and on May 26, 2014, Penelope passed away. Please keep the Davis family in your

    Reece Puddington dies of cancer aged 11

    Our thoughts and prayers are with the Puddington family after hearing that their 11 year old son, Reece died after a 6 year battle with neuroblastoma. All throughout Reece’s battle he helped raise awareness of his condition and funds to help other terminally ill children enjoy time with their

    Caden Shrauger

    Caden Shrauger is very near and dear to our hearts and it completely grieves us to hear that Caden’s CT and MIBG scans are clear, however, doctors found a few isolated neuroblastoma cells in Caden’s marrow. What’s even worse is that there is no protocol in the situation Caden is currently facing and his parents are forced to make a decision as to what to do next for treatment. Currently, his family is asking for prayers for guidance and wisdom as to what the best choice would be for Caden. To follow Caden’s progress, please visit his CaringBridge page at:

    ‘She’s our warrior princess’: Girl, 3, who has spent half her life battling aggressive form of cancer is finally given the all-clear

    Anya Bentham, 3, was diagnosed with neuroblastoma when she was 10 months old. After a long and frightful battle, Anya’s doctors declared her NED! “Doctors and nurses told us later that they didn’t expect her to survive more than a few weeks after her initial diagnosis” said Anya’s mom Naomi Stanley. This is such great news!

    Non-Profits / Events / News

    Black Diamond Police name Howie Koch as Chief for a Day

    Black Diamond Police Department has reached out to a chronically ill child within the City of Black Diamond in order to not only give the child a day that focuses on their dreams, not their illness, but also to heap blessings on the child and family through a program called Chief for a Day. This year 3 year old Howard “Howie” Koch was chosen. Howie was diagnosed with Stage 4 Neuroblastoma in December 2013, at the age of just 2 years old. Along with making Howie Chief for a day, the Black Diamond Police Department also is actively requesting donations in the form of gas cards, toys for both Howie and brother Mason, gift certificates, and/or any monetary donations. You can follow Howie’s progress on Facebook at:

    Cash will be raised in Sam Shaw’s name to aid others

    5 year old Sam Shaw will continue to raise cash in his name to help other youngsters suffering from neuroblastoma even though doctor’s revealed that after 16 months of treatment Sam is NED! The money received goes to the Neuroblastoma Children’s Cancer Alliance and will be held in the case that Sam should need further treatment; if not, the money will go to families in need. To donate, visit www.just

    FUNd Run set for June 5 at Veterans Park School in Ludlow in honor of Avery McAvoy

    Veterans Park School will hold a FUNd Run in honor of Avery McAvoy June 5 at the school. Avery is a one-year-old girl recently diagnosed with Neuroblastoma. Groups of students and staff will be running/walking in honor of Avery. We hope there is a huge turnout for this event!

    Three day music festival at Golborne pub in aid of Braiden Lee Prescott appeal

    A Goldborne pub is staging a three day music festival in aid of Braiden Lee Prescott who is fighting neuroblastoma. Admission is free with money being raised through a raffle for prizes donated by local businesses.

    A Big Place That Saves the Lives of Little People

    Ariana Paxton is a five year old little girl from Idaho who has been diagnosed with stage 4 high-risk Neuroblastoma. Because Ariana’s immune system is so weak she must be held in isolation. Ariana can’t leave her room to do activities, art teacher Susan Micholson goes to her as does her music therapy teacher. Ariana’s latest scans say she is cancer free and next month the Make-A-Wish Foundation is sending her to the happiest place on earth! Disney World where she is excited to meet Aurora from Sleeping Beauty and

    BLOOD DRIVE: Honoring Princess Camryn

    ”Princess” Camryn Storbeck died earlier this month after a courageous 3 ½ year battle with neuroblastoma. In honor and memory of this real-life princess, former staff, teachers and friends of Camryn will be holding a blood drive Tuesday, May 27th at Crestview Elementary School from 1 to 6 p.m. If you live near Clive, Iowa, you can schedule your appointment at

    INBRACED awards $400,000 grant to launch an international neuroblastoma clinical trial

    Solving Kids’ Cancer, the Neuroblastoma Children’s Cancer Alliance (NCCA UK), and Joining Against Cancer in Kids (J-A-C-K) awarded its first grant through their INBRACED (International Neuroblastoma Research and Collaboration for Effective Delivery) initiative, which aims to improve access of promising clinical trials for children with high-risk neuroblastoma in North America, the UK and in Europe. The grant amount of $400,000 will create a new immunotherapy treatment option in the U.S., UK, and in Spain, for children with relapsed or refractory disease. The initial phases of these trails have already shown some promising results in kids battling neuroblastoma in the US. This is great news!

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  • 22 May

    This Week in Neuroblastoma – 05-22-14

    ”If we don’t stand up for children, then we don’t stand for much” ~ Marian Wright Edelman

    Here’s this week’s links…

    Kids – Why We Fight

    Raising Hope for Raygan

    Six rounds of chemotherapy, a stem cell harvest, a bone marrow transplant and 20 days of radiation all endured in the first two years of Raygan’s life after being diagnosed with neuroblastoma. Raygan may need to travel for more treatment which will require extra funding which is why Raygan’s family will be holding a fundraiser on July 20. In addition to raising money for Raygan’s medical bills, money will go toward the Children’s Hospital at UVa. To help with the event or get more information, people can email

    Merryn’s the one that drags us all out of bed in the morning’ – Dad

    Friends, family, and completely strangers have poured out their hearts to support Merryn who is battling Stage IV neuroblastoma. “People have been so kind and brilliant,” says Merryn’s father Michael. “All over. In Derry and down here and all over Ireland and in the UK. It’s been a great help.” There are several fundraising events planned over the coming months. For example, on June 2nd nearly 300 women plan to donate their proceeds from the 10K women’s mini-marathon in Dublin to the Merryn Fund. Then on June 14 and 15, volunteers will be taking part in the Hell and Back endurance event in Bray, for Merryn. To get involved in fundraising for the Merryn Lacy fund visit the fund’s website, and its Facebook page,

    Wee Oscar’s legacy raises over £600,000 for charity

    Brave five-year-old Oscar passed away on May 8 after battling childhood cancer neuroblastoma for two-and-a-half-years. Since his death, donations have continued to pour in on the Justgiving pages set up to support the youngster’s fight against the aggressive disease and has raised well over £600,000. The money raised not only went to Oscar Knox Neuroblastoma Children’s Cancer Alliance (NCCA), but also went to Northern Ireland Children’s Hospice and the Haematology Unit at The Royal Belfast Hospital for Sick Children. Keep up the good fight!

    Boy who survived neuroblastoma now skiing in major competitions

    Kieran Troup, 14, was diagnosed with neuroblastoma when he was just 10 months old, and spent most of the first two years of his life in hospital. Today, Kieran is now skiing competitively for Scotland! How cool is that?!

    Non-Profits / Events / News

    Run 2 Cure Neuroblastoma

    Little Evie was diagnosed with neuroblastoma in 2013 when she was just 2 years old. Recently, Evie received some great news- she is NED! Evie is now entering in the final round of treatment known as immunotherapy. The Run 2 Cure Neuroblastoma Fun Run will be held on June 22, 2014, in Australia and will benefit children like Evie who are battling neuroblastoma. You can learn more about Evie by reading her Facebook page “Pray for Evie.”

    Local four-year-old’s fight against cancer

    Desirae Cechin, 4, was diagnosed with neuroblastoma on April 16, 2014. This diagnosis completely blindsided and devastated Desirae’s family. However, Desirae and her family are determined to fight. This is just the beginning of a very long and very trying time for Desirae. Please keep her in your thoughts and prayers. For more information on how you can help Desi in her fight against cancer, visit her event page on Facebook “Believing for Desi”.

    Marcus Hook Elementary students set to host Alex’s Lemonade Stand

    Fourth graders at Marcus Hook Elementary hosted their annual Alex’s Lemonade Stand fundraising event to learn more about Alex Scott’s heartbreaking battle with neuroblastoma that she lost at age 8. All donations will be sent directly to Alex’s Lemonade Stand. Online donations are also welcome on the Marcus Hook Elementary donation page:

    Parent makes G.I. Joe tribute — with ’80s voice actors

    In 2009 Armand was diagnosed with stage-4 neuroblastoma cancer when he was just 2 years old. Not long thereafter, his younger sister Autumn-Rose Pogue was born with a serious vision impairment. Their father Paul decided to create a G.I. Joe-themed tribute to them using voice actors from the original ’80s cartoon to do the narration. Be sure to check out the awesome video!

    Experimental Antibody Shows Potential Fighting Childhood Neuroblastoma

    Researchers from the St. Jude Children’s Research Hospital reported that its investigational monoclonal antibody hu14.18K322A shrank tumors and halted disease progression in 15 children with advanced neuroblastoma enrolled in a safety study. Trial participants received one of nine different doses of the antibody and received an infusion of hu14.18K322A once daily for four days. Of the 31 who underwent two or more treatment rounds, nine patients saw the disease stabilize, two patients saw a reduction in tumor size, and four patients did not report any tumors. This is fantastic news and we look forward to hear more about the outcomes of these young patients!

    TET1-Mediated Hydroxymethylation Facilitates Hypoxic Gene Induction in Neuroblastoma

    Here’s an article for all of you in the medical field or understand medical terminology. This article discuss how cells respond to hypoxia by inducing a transcriptional program regulated in part by oxygen-dependent dioxygenases that require Fe(II) and α-ketoglutarate. The research outlined in this article establishes that the TET1-mediated 5-hmC changes as an important epigenetic component of the hypoxic

    Lifetime Achievement Award Honors CHOP Expert Garrett Brodeur for Career Work in Neuroblastoma

    The Advances in Neuroblastoma Research Association (ANRA) is awarding its highest honor on pediatric oncologist Garrett M. Brodeur, M.D., of the Cancer Center at The Children’s Hospital of Philadelphia (CHOP). Brodeur will receive the ANRA Lifetime Achievement Award at the association’s international meeting in Cologne, Germany. The Award singles out a researcher who has achieved worldwide scientific prominence in investigating neuroblastoma over the course of a career. Congratulations Dr. Brodeur!

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  • 19 May

    This Week in Neuroblastoma – 05-16-14

    This week is packed with numerous promising trials that have shown extraordinary results. Such research and trials are desperately needed, especially for neuroblastoma patients like 2 year old Keagen Thill, 5 year old Molly McNally, 4 ½ year old Lulu Demetriou, and 6 year old Sammy Nahorny. We remain optimistic that a cure is in the future!

    Here’s this week’s links…

    Kids – Why We Fight

    Keagen’s Fight Against Neuroblastoma

    Keagen Thill, 2, was diagnosed with stage 4 Neuroblastoma on 6 June 2012. The tumor started in his left adreneal gland and spread to his right adrenal gland wrapping itself around and through his spine paralyzing his left leg. Keagen had scans this past week which dreadfully revealed that he has relapsed. Please keep Keagen and his family in your prayers as they prepare for PET scans and a biopsy. You can follow Keagen’s journey via Facebook at “Keagen’s Fight Against Neuroblastoma.”

    Brave Molly battling the ‘bold boy in her tummy’, as she calls her cancer

    Molly McNally, 5, is battling neuroblastoma, or the ‘bold boy in her tummy’ as she refers to it. “Neuroblastoma Stage 4 is unfortunately the worst type, the most aggressive and it is hard to treat. But Molly keeps us going and she is receiving the best treatment available from the doctors and staff at Crumlin and at Our Lady’s in Drogheda. However, we need to make contingency plans in case she needs to get treatments outside the HSE system,” said Emma, Molly’s mom. Molly has her own Facebook page “Molly McNally Miracle Trust” and her own webpage with further details about fundraising events can be found at

    Lulu is mum’s little miracle

    Lulu Demetriou, 4 ½, was diagnosed with neuroblastoma when she was only 8 months old. Lulu has endured 12 rounds of chemotherapy, 14 rounds of radiotherapy and a stem cell transplant. Unfortunately, doctors told Lulu that they have exhausted all proven treatment options and her parents live in hope that researchers somewhere in the world will develop a clinical drug trial that could improve her chances of survival. Please keep Lulu in your prayers.

    He Fights Like a Superhero, but He’s Just a 6 Year Old Kid

    He may not have superhero powers, but 6 year old neuroblastoma fighter Sammy Nahorny sure fights like a superhero. A tumor was found above Sammy’s left kidney which spread to lymph nodes and bone marrow. Sammy went through high dose radiation in Chicago, mostly alone as treatments made him radioactive, too dangerous to touch. A non-profit called Sammy’s Superheroes was set up to help fund Sammy’s treatments as well as other superheroes fighting neuroblastoma. To learn more about Sammy’s Superheroes, please visit

    Non-Profits / Events / News

    Cushendall cancer patient donates fund to charity

    Nicola McCurry, 26, from Cushendall has been suffering from neuroblastoma since she was 6 years old. Nicola relapsed in 2009 and was told last summer that there were no further treatments available for her. Since that terminal diagnosis, Nicola decided to donate £40,000 raised for her to help others suffering from the same cancer. Nicola said, “On learning that I am not suitable for further treatment I wanted to tell all the people who have fundraised for me and kept me in their thoughts and prayers and that I am extremely touched and grateful for everything.” How incredibly generous is this beautiful young lady?!

    R&D Alliance Formed To Develop Cancer Treatments For Children

    Children cancer advocates and researchers in Australia and the U.S. have entered into a partnership, forming the Children’s Oncology Drug Alliance (CODA), a research and development alliance that will facilitate drug development for children with neuroblastoma. This new partnership will attempt to expedite development of an innovative new therapeutic approach to neuroblastoma. We are extremely excited about this new alliance and the potential for the development of a cure for neuroblastoma!

    $2.437M Grant to Fund NY Genome Center Pediatric Cancer Research Effort

    The New York Genome Center (NYGC) launched a multi-institutional research effort aimed at fighting pediatric leukemia and neuroblastoma funded by a two-year, $2.437 million grant from The Sohn Conference Foundation, both institutions said today. NYGC will also conduct genome sequencing and computational analysis for the research effort. These efforts will attempt to identify and analyze why some children’s tumors respond readily to treatment while others do not. The results of these studies will be able to more effectively and accurately treat leukemia and neuroblastoma treatments. Just one step closer to a cure!

    Experimental antibody shows early promise for treatment of childhood tumor

    St. Jude Children’s Hospital conducted clinical trials of the monoclonal antibody hu14.18K322A. The results were astonishing! Tumors shrank or disappeared and disease progression was temporarily halted in 15 children with advanced neuroblastoma. Because of these results, St Jude will be expanding their trials to include newly diagnosed patients. We are eager to continuing following this research as it has shown extremely positive results!

    Promising High-Dose Radiation Therapy for Neuroblastoma Now Offered in Illinois

    The University of Chicago Medicine Comer Children’s Hospital has become the first in Illinois to offer pioneering, targeted, high-dose, intravenous radiation therapy for relapsed neuroblastoma and other difficult-to-treat cancers. There are only about 12 hospitals nationwide that are equipped to administer metaiodobenzylguanidine or MIBG. MIBG is a molecule that is internalized by neuroblastoma cells. When combined with radioactive iodine and administered to patients intravenously, MIBG can target and kill tumor cells while sparing healthy tissue. MIGB does not cure neuroblastoma, however it is a promising next step in a complex treatment plan for high-risk patients. For more information on neuroblastoma care and research at Comer Children’s Hospital visit

    Washington educators get all wet for fundraiser

    Washington Jr. High teachers ‘Plunge for Eli’ and raised over $50,000 for Green Bay toddler, Eli Kupsky, who was diagnosed with neuroblastoma one month after he was born. In August of last year, Eli’s mother, Cammie, found a lump on the infant’s leg while changing his diaper — a lump that was later found to be one of 15 tumors on Eli’s body. After initial treatments failed to prohibit tumor growth, Eli was transferred to to a neuroblastoma specialty clinic in New York. Eli’s family remains optimistic that this treatment will be successful. For more information about Eli, or to make a donation, visit

    Hair-raising idea to raise cash for cancer charity

    A charity haircut event was held in memory of eight-year-old Jesson Wragg, who died from neuroblastoma in 2007. Funds raised from this event were donated to the Neuroblastoma Society. Jesson’s mother, Helen, who herself suffered from ovarian cancer and underwent a hysterectomy, said, “Apart from the fund-raising aspect, we also want to raise people’s awareness of what neuroblastoma is and how it affects everyone involved with the children who suffer from it.” We hope the event was a great success!

    Manziel invites 6-year-old fan to NFL Draft

    Charlie Dina, 6, was diagnosed with neuroblastoma in 2012. Shortly after diagnosis, Johnny Football learned of Charlie’s fight with cancer and started to wear a yellow wristband with the words “Charlie’s Angels” on it. For the past year and half, the two have been inseparable. Charlie goes to games and the friendship has helped the Dina family turn Charlie’s Angels into an official charity. This week, Charlie and his parents are in New York City as guests of Johnny to attend the NFL Draft. To learn more about Charlie, please visit his Facebook page at “Charlie’s Angels 413.”

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  • 8 May

    This Week in Neuroblastoma – 05-08-14

    Hazel Hammersley mother sums up this week’s articles and speaks for all of us when she says, “We have been absolutely humbled and surprised by the outpouring of love and support from the online community and can only hope and pray that this brings awareness to Neuroblastoma and the Childhood Cancer Community.”

    Here’s this week’s links…

    Kids – Why We Fight

    Baby Macie Allen’s cancer tests clear, to relief of family

    Macie Allen, 6 months old, was diagnosed with neuroblastoma when she was only 20 days old. Baby Macie underwent 2 months of intensive treatment and just recently Macie’s family was blessed with the news that the tumors on her liver have disappeared! Upon further testing, doctors shared that Macie’s cancer has not returned. Fundraising for Macie is continuing, should she relapse in the future and need treatment abroad. Hull man Shaun Gowan is taking part in a sponsored slim to raise funds, while Helen and family friend Jackie Beaumont are planning to take part in a sponsored sky dive later this year. We are praying for you Macie! Keep fighting, little warrior!

    Five year-old Molly McNally’s Fight against Neuroblastoma

    Please take 5 minutes and watch this beautiful video that details 5 year old Molly McNally’s battle against neuroblastoma. This is the painful world in which neuroblastoma families endure on a daily basis. Molly has her own Facebook page “Molly McNally Miracle Trust” and her own webpage with further details about fundraising events can be found at

    Girl thrown hospital pizza party by Reddit readers is now ‘cancer free’

    The little 2 year old neuroblastoma fighter who captured the world’s heart by simply asking for pizza via her hospital room window is now cancer free! Hazel Hammersley was diagnosed with stage 3 neuroblastoma in April 2013. After a year of treatment, Hazel has beaten the disease, she said, writing underneath the photo: “God has blessed our daughter with a body free of the beast we call Neuroblastoma”. Such amazing news! We are so proud of you, Hazelnut!

    Non-Profits / Events / News

    Deputy police chief known for community involvement retiring in Gurnee

    Gurnee Deputy Police Chief James Caldwell, known for his participation in a variety of community service endeavors, is retiring from his longtime village career. He became an active community member through helping to launch the Jon Callaghan Memorial Turkey Trot benefiting various charities and neuroblastoma research, volunteering at the Gurnee Park District’s annual Fall Fest and other projects. Jon died from neuroblastoma in 1997. Thank you Deputy Police Chief Caldwell for your commitment to protecting and serving the community as well as supporting neuroblastoma

    Benefit set for Baby Kohen Wright

    Kohen Wright, 6 months, was born with neuroblastoma. A benefit was held for baby Kohen on May 4th at the D&N Event Center. Big Al Raby of Lexington performed for the benefit and a silent auction was held to raise money to cover some of Kohen’s medical expenses. You can make a financial contribution by sending a check to: Kohen Wright, personal account, c/o First National Bank, 201 N. Dewey, North Platte, NE

    Minster schoolboy Oliver Smith has fund for neuroblastoma treatment boosted by car show at Little Groves in Leysdown and Kent New Look stores

    A fund has been set up to help 5 year old Oliver Smith who is battling neuroblastoma. The Oliver Smith Appeal is striving to raise £500,000 in case Oliver should relapse and need further treatment abroad. Fashion chain New Look as well as Kent stores are supporting and fundraising for the Oliver Smith Appeal. To learn more about Oliver and the Oliver Smith Appeal, please visit their Facebook page at: “Help Oliver Smith Beat Neuroblastoma.”

    MicroRNAs define distinct human neuroblastoma cell phenotypes and regulate their differentiation and tumorigenicit

    A new neuroblastoma study just came out which studied the role of MicroRNAs in neuroblastoma cells. Results of this study revealed that unsupervised hierarchical clustering of miRNA microarray data segregated neuroblastic and non-neuronal cell lines and showed that specific miRNAs define each phenotype. This study could possibly assess a patient’s survival rate and establish specific treatment protocols depending upon their MicroRNAs interaction with neuroblastoma cells. This is just more exciting and promising news!

    Wilkinsons reunite Saturday night for a cause

    The family of James Birrell, who lost his battle to neuroblastoma, are celebrating the 13th year of the globally recognized organization The James Fund, with the reunion of country music and juno award-winning group, The Wilkinsons. The James Fund was created in honor of James and is dedicated to raising awareness about neuroblastoma and the importance of its cure for our children. The James Fund also helps to educate families, as well as facilitate research in order to generate a potential cure. You can learn more about the James Fund, including upcoming events by visiting

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  • 1 May

    This Week in Neuroblastoma – 05-01-14

    As we come home rejuvenated and optimistic from the NMTRC Symposium about all the new Neuroblastoma research occurring, we still are faced with children dying, relapsing, or being diagnosed everyday with this horrible monster. We fully believe that a cure is in the future, but until then we will continue to raise awareness and funding for every child and family battling this disease.

    Here’s this week’s links…

    Kids – Why We Fight

    Nineteen year old with Scott County ties succumbs to neuroblastoma

    Jordyn Conner, 19, has died from neuroblastoma. Jordyn will always be remembered for making Easter brighter for patients at the Kentucky Children’s Hospital. “Jordyn has earned her wings and has gone home to be with the Lord. Thank you all for your prayers and support,” according to the Facebook page, Team Jordyn. Our hearts break to hear about another innocent child losing their battle to neuroblastoma. Our prayers go out to the Conner

    Brave Merryn continues her illness battle

    In August 2013, five year old Merryn Lacy was diagnosed with Stage IV Neuroblastoma. Three weeks ago, Merryn had a tumor removed from her right kidney in a three-hour operation after receiving 8 months of chemotherapy. According to Merryn’s father Michael, Merryn was up and dancing just 48 hours after her operation! Michael describes Merryn as very social and said the worst thing about her stays in hospital is that she can’t get to go out to play with her friends. “She loves One Direction and has started dance classes,” he said. “She also loves arts and crafts, painting and coloring, and is very creative. Our aims is to keep life as normal as possible for her while she continues her battle against her illness.” For more information on Merryn’s brave battle and to make a donation to her fund, visit .

    Charlie Grantham’s cancer op delayed

    An extremely vital operation for 2 year old Charlie Grantham has been delayed indefinitely after his sister came down with the chicken pox. Charlie was diagnosed with neuroblastoma in November 2013 and was suppose to be having a large tumor removed from his abdomen. Charlie’s mom Chrissy said, “I have no idea when it will be rearranged, but I can’t see it being that long because they want to get it done and get him on a high dose of chemotherapy.” We hope you are cleared for surgery quickly, Charlie!

    Brave Oscar Knox has shown us we can be so much more

    “I don’t want to be a boy anymore. I don’t want to be me” were the words of 5 year old neuroblastoma fighter Oscar Knox. Oscar was recently placed on hospice care after doctors revealed that his cancer has become unresponsive to treatment and continues to spread rapidly. Many have been inspired by this young child’s courageous battle and have changed their perspective on life because of him. Please keep Oscar in your thoughts and prayers.

    Non-Profits / Events / News

    Long Eaton concert is music to the ears of toddler with rare cancer

    The family of a 3 year old Long Eaton little girl who has been battling cancer are planning to hold a concert to pay for her cancer treatment abroad. Sienna Riley was diagnosed with Stage IV neuroblastoma when she was just 20 months old. The Sienna Showcase on May 17th will feature songs and routines from films and musicals as well as comedy sketches and a charity raffle. To donate to the Sienna Riley appeal, visit

    Marathon run in memory of Lexy

    40,000 runners laced up their kicks and hit the pavement for 26.1 miles in memory of Alexander “Lexy” Strong who died from neuroblastoma in January 2013 at the age of 7. The event raised £2000 and will go to the Neuroblastoma Society. What a wonderful tribute to Lexy!

    Inspirations: Help Chloe Ferris sing again

    Like every other 5 year old girl, Chloe Ferris loves to sing, dance, and ride on her scooter; she wants to be a ballerina when she grows up. However, unlike other 5 year old girls, Chloe is facing a grueling battle against neuroblastoma which has made her extremely ill and has robbed her of her ability to walk. With six older brothers, three older sisters and loving parents Rebecca and Wayne, Chloe has an abundance of support and her family has just one wish right now,that Chloe will be able to sing again. Family friends have already been fundraising for a dream cottage for Chloe to play in when she can’t be around other children. Chloe, we are all praying that you will sing once again!

    Va. students remember cancer-stricken classmate with Coins for Cody

    “His smile — the smile that could light up the classroom. No matter what kind of day he was having, he would come into the classroom and he was happy to be there,” said Cody Johnson’s former Kindergarten teacher Barbara Colley. Cody Johnson was only 6 years old when he died in 2009 from neuroblastoma. Since his passing, classmates have kept Cody’s memory alive by establishing Coins for Cody. Every dime of it will be donated to neuroblastoma research. Coins for Cody is just one part of the Cody’s Crew Foundation. To learn more about the Cody’s Crew Foundation, visit:

    Support floods in for brave five-year-old cancer sufferer

    We shared the upsetting news last week that 5 year old Summer Allen has relapsed neuroblastoma. Since her family’s announcement, friends, family, and complete strangers have poured out their support to Summer. Her family has been told that NHS limitations mean she may have to travel abroad for life-saving medical support – at a cost of around £500,000 – meaning relatives are stepping up fundraising efforts for the Summer Allen Appeal, which is backed by the Families Against Neuroblastoma charity. Summer’s family is completely humbled by this flood of support for their daughter. “We are just so grateful for all the people who are in our lives, to every single person who wishes her well,” says Summer’s mother Sarah. To learn more about Summer and to donate to her appeal, please visit her Facebook page at

    Video, e-mag and stories from our Pride of Hartlepool awards

    The Pride of Hartlepool awards honoured the town’s most courageous and most inspiring people – and leading the way were four children of courage: Bradley Lowery (2), Saphere-Jae Espley (3), Callum Smith (2), and Lucy Wood (10). One of the four children who were honored is currently battling neuroblastoma. Bradley Lowery’s family established the Bradley Lowery’s Neuroblastoma Fight Group to raise funding in the case that Bradley should relapse. Bradley’s foundation has also raised thousands of pounds for another Children of Courage winner. Congratulations to all the winners!

    Boy mostly alone in hospital room during unique cancer treatment

    A 6 year old boy lays secluded in a hospital room away from his family, friends, favorite blanket and stuffed animals. Last week, Sammy Nahorny became the first patient at Comer Children’s Hospital to undergo high-dose radiation therapy for neuroblastoma called MIBG. Erin and Chris Nahorny interacted with their son primarily through a closed-circuit TV monitoring system and walkie-talkies and will have to continue to do so until Sammy’s radioactivity levels to drop closer to normal. The Nahornys created a foundation called Sammy’s Superheroes to increase awareness and funding for pediatric cancers. To learn more, please visit:

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  • 28 Apr

    2014 NMTRC Symposium in Grand Rapids, MI


    Each year, the NMTRC (Neuroblastoma & Medulloblastoma Translational Research Consortium – holds a conference discussing the advances made in neuroblastoma research in the past year, and the direction their group is focusing on for the future. This is our 4th year attending (we also wrote about the 2012 and 2013 events).

    This year, over 120 physicians, researchers, parents, and non-profit managers gathered in Grand Rapids, Michigan as a powerhouse of focus on curing neuroblastoma. The discussions this year revolve around personalized antibody treatment, sequencing and molecularly guided therapy, and preventing neuroblastoma relapse.

    A powerful opening from Jude Sibley began the conference. Her amazing daughter, Lily-Mae, was one of 7 kids in Ireland who will get neuroblastoma each year. Irish hospitals have no clinical trials for neuroblastoma, and when she was diagnosed the doctors told Jude her daughter had 3-5 weeks to live. That was in 2012, and today Lily-Mae is still dancing with her family. Jude and Lily-Mae’s dad Leighton found the DFMO trial being ran by the NMRTC, which has incredibly promising results in preventing relapse, and travel from Ireland to Michigan every 3 months to participate. “Our kids need to get on with the business of living. It is us who worry,” said Jude. With a current 70% chance of relapse after neuroblastoma remission, and no cure for relapse, preventing relapse is a huge win.


    The symposium has a wealth of medical minds present from all over the country. Lynne P. Yao, MD, the Associate Director, Office of New Drugs, Pediatric and Maternal Health Staff for the FDA joined us via WebEx, and Greg Reaman, MD, Associate Director of Oncology Sciences with the FDA also spoke, and are excited about what the NMTRC is doing. You can download the full program here (pdf).

    Dr Giselle Sholler, chair of the NMTRC, shared results of the DFMO trial Because of Ezra is helping to fund. The results are extremely promising, and will be publicly available soon.

    Conferences like the NMTRC Symposium are great for a variety of reasons. As parents of a child who died of neuroblastoma, Robyn and I find a great value in spending time with other parents who’ve shared our experiences in some way. There is a common bond which allows us to laugh and cry easily while talking about our children and cancer. The researchers at the conference are warm and passionate, discussing new ideas and the details of current studies at length both with parents and physicians. Many innovative ideas spring from the conversations held over lunch, dinner, and throughout the day’s presentations.

    There’s still another day and a half of the conference left. August Calhoun, the VP/GM of Dell Healthcare and Life Sciences will be talking about Dell’s vision for the future of medicine. Dell has been an amazing supporter of childhood cancer research and the NMTRC as well.

    We’re motivated to continue toward a cure for neuroblastoma. The annual growth in this conference, along with other neuroblastoma-focused conferences, is powerful to see, and gives us so much hope. We can beat this, together. Thanks for all your support.

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