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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