Here’s this week’s links…

Kids – Why We Fight

Wyatt Glastetter

2-year-old Wyatt Glastetter of Jackson, MO has been battling NB since he was 18 months old. After a misdiagnoses from doctors and an inexplicably broken femur, a radiologist discovered a mass sitting on Wyatt’s adrenal gland. Wyatt’s mother, Stacy Glastetter, has been his biggest advocate. Now, the “Student Santas”, an organization that raises money all year to provide Christmas gifts for area children, is getting behind Wyatt’s cause. They are selling tickets to the St. Louis Cardinals game against the Rangers on Friday, June 21st. kfvs12.com.

Non-Profits / Events / News

Charity Dinner for Sam Shaw

We introduced you to Sham Shaw a few months ago. The resilient four-year-old is still undergoing treatment for NB and his parents are working to raise £250,000 needed for medical expenses. A charity dinner has been organized to help their efforts. There will be a three-course meal, live entertainment, raffle and silent auction. It sounds like a lot of fun! lancashiretelegraph.co.uk.

Successful Surgery for Fraja Simpson

Remember Fraja Simpson, from last week? She underwent high-risk surgery to remove her aggressive neuroblastoma tumor. Thanks to the unique way her body responded to the tumor, (the tumor pusher her organs out of the way instead of absorbing them), doctors were able to remove the tumor in one piece! She was already up and joking with nurses just hours after her surgery. She has also named her scar Sally. Fraja says that “Sally is there to protect her and will be her friend for life now.” thenorthernecho.co.uk.

Knox Family Moves Forward

Oscar Knox was given the all-clear last month after a year of treatment to rid him of Neuroblastoma. His family was elated with the news and is doing their best to return to a “relatively normal” life. The Knox family explained on their Facebook page that, because of the 50% relapse rate with neuroblastoma, they are going to hold on to the remaining £350k in Oscar’s fund. After five years, if Oscar is still happy and healthy, the money will be released to the Neuroblastoma Children’s Cancer Alliance general fund to help other kids. u.tv.

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We are crushed to say good-bye to Oliver Zane Emerson this week.

Others are raising money to continue their fights. A few football stars are also doing some great things to help spread awareness.

Here’s this week’s links…

Kids – Why We Fight

Charlie Dina

Charlie is a normal 4 year old in most ways. He loves Legos, Star Wars, super heroes and the Texas Aggies. But unlike most four year olds, Charlie is battling neuroblastoma. He has undergone surgery to remove one of his kidneys, experienced cardiac arrest while receiving chemo and endured a stem cell transplant. Charlie’s family has created Charlie’s Angels, a network of support for the entire Dina family. They’ve gained the attention of several celebrities, including local celeb Johnny Football (Johnny Manziel) from Texas A&M, who now proudly sports a Charlie’s Angels wristband. Charlie is now undergoing scans to see how his cancer is responding to treatment. blog.parkersu.com.

Joseph Charles

Five-year-old Joseph Charles has spent over 120 days of his life in the hospital since his neuroblastoma diagnosis 3 years ago. Called Joe Joe by family, Joseph shocked the Make-A-Wish coordinator with his unusual wish; he wanted to be a farmer. Joe Joe’s wish was made a reality when it was arranged for him to spend a day gathering eggs, holding piglets and fishing. cattlenetwork.com.

Oliver Zane Emerson

With heavy hearts we say good-bye to Oliver Zane Emerson. Oliver passed away at age 6 in his home on Tuesday, May 7th. Oliver fought neuroblastoma for almost three years. He loved Legos and sword fighting, and his deep faith in God inspired many during his battle. m.hollandsentinel.com.

Non-Profits / Events / News

Allie & Friends Golf Classic

Monday, May 6th, former Indianpolis Colt Ryan Diem hosted a charity golf tournament for Allie & Friends. Allie & Friends is named after Allie Neff, who sadly passed away from neuroblastoma. Joining Ryan at the golf outing were former Chicago Bears Dan Hampton and Glen Kozlowski. nwherald.com.

Fundraiser for Fraja Simpson

Family friends are working hard to organize a fundraiser for five-year-old Fraja Simpson, who has been diagnosed with neuroblastoma with MYCN amplification. Because the treatment she may need is not available in the UK, her parents have launched an appeal to raise the £500,000 needed to bring her to America for treatment. Read on to see how you may be able to help if you’re in the area! thisissouthwales.co.uk.

Mayor of Bedale honors Fraja

Remember Fraja Simpson? (Come on, it was just one link ago!) Mayor Amanda Coates of Bedale invited Fraja to be an honored guest at a recent charity fair organized by Emergency Animal Rescue Support. The organizers of the fair have made a donation to the appeal started to bring Fraja to the states for treatment. thenorthernecho.co.uk.

Genie Grants Liam’s Wish

After losing his father to cancer, Joshua Dawson set out on a mission to bring joy to those diagnosed with the disease. He dresses up like a genie and grants their wishes, how cool is that? Last week he made Liam Myrick’s wish come true. He accompanied four-year-old Liam and his family to the St. Louis Zoo and took him on a helicopter ride. fox2now.com.

Turn Skem Pink for Millie-Moo Walk

Millie Heaton is only 22 months old and is undergoing intensive chemotherapy after being diagnosed with neurbolastoma earlier this year. Her parents hope that Millie will be able to have immunotherapy treatment in America and are working hard to try and raise the money to get her to the US. They put a small dent in the amount needed recently, raising £1,077 through a charity walk. Their next event will be a Fun Day at the Derby Arms organized by Milly’s 14-year-old cousin. osadvertiser.co.uk.

Launch of the Global Neuroblastoma Network (GNN) Website

The Global Neuroblastoma Network (GNN) has officially launched its website! The GNN is an initiative that includes several institutions and professionals who are striving to improve treatment for children with neurbolastoma and establish a global network for neuroblastoma research and care. The website will promote interaction among professionals through knowledge-sharing group pages. Check it out! cure2children.org.

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The NMTRC (Neuroblastoma & Medulloblastoma Translational Research Consortium) is a group of 18 universities and children’s hospitals headquartered in Grand Rapids, MI which offer a nationwide network of childhood cancer clinical trials. The group is chaired by Dr Giselle Sholler. These trials are based on the research from a group of closely collaborating investigators who are linked with laboratory programs developing novel therapies for high-risk neuroblastoma and medulloblastoma.

They’re one of the groups Because of Ezra supports financially under our mission of funding relevant, patient-affecting research into a cure for neuroblastoma. The NMTRC hosts an annual symposium, where the members meet to discuss the previous year’s work and future directions. The 2013 symposium was this past Monday and Tuesday (May 6-7) at the Wyndham hotel in Lake Buena Vista, Orlando, FL. Video will be on YouTube within the next week or two (and we’ll mention when it is), but we wanted to share some of the experiences here first. You can watch the entire conference on YouTube if you’d like, separated by discussion.

The NMTRC is unique in the level of community between the physicians, scientists, and families (both in treatment, out of treatment, and those running foundations). We largely attend the same presentations, dinners, and have structured open conversations about the work being done. The depth of collaboration is refreshing and inspiring. When you have parents whose children are ON a trial participating in the same conversations as the scientists who proposed the trial, the organizations funding it, and the physicians carrying them out… it’s an incredibly effective synergy.

The work being done is truly remarkable – the first ever FDA approved personalized medicine trial for pediatric cancer, preventative trials to reduce the rate of relapse (in this case with a drug called DFMO), immunotherapy, and more. One of the most interesting presentations was by David Krag, MD, who is the SD Ireland Professor of Surgery at the University of Vermont (yes, he said, surgeons do science, too!). Titled Personalized Antibody – Timeline to Clinical Impact, Dr Krag discussed an exciting method of harnessing the body’s own immune system to create personalized antibodies specifically for an individual’s neuroblastoma tumor. It should be going to trial this year.

Personalized medicine is a concept at the core of what the NMTRC is doing. It has the huge benefit of being much less toxic (and much more targeted) than the standard chemotherapy regimens currently prescribed for neuroblastoma. These current standards are not effective (survival rates for stage 4 neuroblastoma hover at 40%, with relapsed neuroblastoma still having no known cure), and include rounds of treatment with what physicians call “kitchen sink chemo.” Partnerships between the NMTRC and the Translational Genomics Research Institue and Dell have pushed forward much of this work by analyzing individual patient’s tumors to find treatment options specific to their disease.

We got to spend some great time with non-profits also working toward a cure for neuroblastoma – and families who are battling it now. Some of the children represented included Will Lacey, Melina Riniolo, Brooke Hester, Saoirse Fitzgerald, Abigail Goss, Daxton Blanford, Chase Ringler - and there were even more. These children are each reasons we fight, and reasons why continuing the battle against neuroblastoma is so very important. Neuroblastoma CAN and WILL be beaten – and it is going to take time, passion, awareness, and funding. We are so, so, so, so grateful to have your support in making this a reality.

Here’s this week’s links…

Kids – Why We Fight

Ryan Wright

18-month-old Ryan Wright is fighting for his life. Suffering from a neuroblatoma relapse, doctors have given Ryan only weeks to live, and his family is desperate to raise the £500,000 needed to get him to New York for surgery to remove a brain tumor. To help raise money, 21-year-old Ev Boothby has put together an urgent concert. The show, which took place last night, had 12 acts including magic, music, comedy sketches, dancing, and a guest appearance from Norfolk comedian Pat Nearney. Ev is hoping that enough money will be raised to make a dent in what is needed for Ryan to get treatment. We’re praying for you and your family, Ryan. eveningnews24.co.uk.

Oscar Knox

Great news; Wee Oscar Knox has been given the ALL CLEAR! Oscar’s family tweeted on April 22nd: “Today we got the most unbelievable news, NO cancer can be found in Oscar’s body. HE DID IT!!!!” Four-year-old Oscar captured the hearts of thousands, both in his hometown of Mallusk, Ireland and beyond, while battling neuroblastoma. We’re so glad to hear that he is doing well. belfasttelegraph.co.uk.

Non-Profits / Events / News

Dad Completes Marathon in Memory of Son

Chris Noble and his wife, Sarah, should be getting their son Alex ready to start school this year. Instead, Chris is preparing himself to complete Maggie’s Monster Bike and Hike in Alex’s honor. Alex Noble passed away after battling neurbolastoma in 2010. The Noble’s are making the most of their grief by raising money for Maggie’s Centres, which proved support for people affected by cancer and have provided much needed support for Chris and his family. Maggie’s Monster Bike and Hike includes a 31 mile cycle and 41 mile hike between Fort William and Inverness in 24 hours. Remembering his son, Chris says, “He lived to the full and his life has inspired me to take part in a series of challenges, the last of which will finish the day before his fifth birthday.” peeblesshirenews.com.

Toxicity Study

Changes in treatment for high-risk neuroblastoma patients are on the horizon. According to a recent study, the United States stem cell transplant regimen is more toxic than the equally effective regimen being used in Europe and Egypt. This study was presented at the 26th annual meeting of the American Society of Pediatric Hematology Oncology in Miami April 24-27th. The two regimens are being evaluated and the COG is considering switching approaches, which could lead to less liver and kidney toxicity and lower changes of bloodstream infections. esciencenews.com.

First National Clinical Trial for Incurable Children’s Cancer

The first national clinical trial ever approved to study all incurable children’s cancers is underway at Van Andel Institute in Michigan – and we fund a part of it! 25 percent of the 10 thousand pediatric cancer diagnoses each year are considered incurable. This new study will analyze the molecular makeup and genetic mutations of each individual tumor and aid in developing a personal treatment plan for each patient. The study is not using experimental drugs, but instead using the analysis of the tumors to determine which off the 200 drugs already available would be most effective. Three-year-old Abigail Goss, a neuroblastoma patient, was the first child to enroll in the new trial. Her mother has high hopes for the study saying, “If you can test the individual tumor and base a treatment plan on the individual tumor, you are not just throwing darts in the darkness, you at least have a flashlight.” Read more about the ins and outs of the trial here. mlive.com.

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Kids – Why We Fight

Ava Jorgensen

Last November, five-year-old Ava Jorgensen started preschool. The very next day, her life changed forever. Ava had been suffering from silent seizures, spacing out and biting. Her school noticed the odd behavior and notified her parents. An emergency ultrasound revealed a grapefruit sized mass in Ava’s stomach; she was diagnosed with stage 3 neuroblastoma. Ava’s family was not prepared for the diagnoses. After tons of tests, scans, surgery and 5 rounds of chemo, the Jorgensen family is hopeful that Ava will recover. She still has a lot more treatment and a long road ahead of her. Tonne, Ava’s mom, is a single mother of 5 children and Ava’s mounting medical bills are taking a toll on her. Family and friends are throwing a benefit to help with the costs on May 11 at 115 Bourbon Street, 3359 W. 115th St., Merrionette Park. We’re praying for you, Ava! southtownstar.suntimes.com.

Non-Profits / Events / News

Soccer for Sam

Former Blackburn Rovers midfielder, Mark Patterson, has organized a charity football match for Sam Shaw. (We introduced you to Sam last month) The match will take place Monday, May 6th at the Anchor Ground at 10:30 am. Money raised will go towards the £250,000 needed for Sam’s immunotherapy, an essential part of his treatment for neuroblastoma. lancashiretelegraph.co.uk.

TinySuperheroes

TinySuperheroes may be the name of her organization, but there is nothing “tiny” about what Robyn Rosenberger does for children in need. After reading about Brenna, a young girl whose mother blogs about her severe skin disorder called Herlequin Ichtyosis, Robyn sent her a cape to help her fight her battles. It snowballed from there. Now, through her Facebook Page, Robyn urges people to sponsor little superheroes who don’t yet have capes. She also posts pictures of superheroes in their capes from across the world. nydailynews.com.

Fundraiser for Sam

Speaking of superheroes, Sam Shaw’s supporters are at it again! If Sam’s supporters keep up their awesome work, he will be in the US for immunotherapy in no time! Friday, a family friendly event was organized to help raise money for Sam’s treatment. There was a DJ, band, magician, raffles and lots of fun to be had. We can’t wait to hear how much money was raised! lancashiretelegraph.co.uk.

COG 2013 Blueprint for Neuroblastoma Research

Want to know more about the heterogeneity of neuroblastoma? Want to learn what heterogeneity means? Take a look at this summary of the Children’s Oncology Group (COG) Neuroblastoma Committee’s article documenting the important current and future research being done to further understand NB. neuroblastoma.ca.

Ezra was diagnosed with stage 4 neuroblastoma on October 4th, 2009 at the age of 13 months.

The day before Ezra’s 2nd birthday the Matthews family discovered he’d relapsed already, less than 4 months out of stem cell transplant. This meant his neuroblastoma was very aggressive, and there was no current cure. They were slated to start a trial using a drug called Nifurtimox, but Ezra’s condition began deteriorating rapidly, and he was unable to qualify for the trial – literally less than an hour before he was about to get the first pill.

On November 8th, at 2:50am, Ezra passed on. The neuroblastoma had kept growing, and although they did one last round of chemo in Orlando, it didn’t stop, and early early on a Monday morning Kyle and Robyn lay in his bed with him and held him as he died. We miss him.

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Kids – Why We Fight

Braiden Prescott

Three-year-old Braiden is undergoing his second round of chemo after a few minor set backs. His parents delayed his treatment twice, since Braiden was suffering from some pretty bad side effects of the chemo, but they’ve decided that chemotherapy is best for him right now. So far, he’s handling treatment pretty well this go around. His fighting spirit also inspired his cousin, Natalie Prescott, to run her first half marathon in his honor. wigantoday.net.

Amelia-Mae

Amelia-Mae is two years old, and she’s fighting for her life. She’s been diagnosed with stage 4 high-risk neuroblastoma, and a recent MRI revealed several lesions and an inoperable tumor on the back of her brain. Amelia-Mae’s parents fear that they may lose her if they do not raise the £250,000 needed for immunotherapy treatment in the US. They are making a desperate appeal to all businesses and individuals to aid in their fight against NB. dailypost.co.uk.

Non-Profits / Events / News

Annual Neuroblastoma Handbag Sale

Inspired by a family member with neuroblastoma, a group of four women are coming together once again to host their annual Handbag Sale for Neuroblastoma. Last year’s efforts raised $8,332 and this year they’re looking to raise much more. Donations of new or gently used handbags are still being gathered. There will also be a raffle that includes two tickets to an appearance by Oprah Winfrey! Good luck ladies! paherald.sk.ca.

Genetic Biomarker May Help Identify Neuroblastomas Vulnerable to New Drugs

BET bromodomain inhibitors are a new class of drugs that researchers are hoping may offer new treatment options for patients with certain cancers. An irregularity found in many NB cells may help indicate if a neuroblastoma tumor will respond the the new anti-cancer drugs. If successful, the BET bromodomain inhibitors could have anti-tumor effects and prolong survival for patients. medicalxpress.com.

Man Gets Waxed for Neuroblastoma

Daniel Sumner is waxing his chest in attempts to raise money for Sam Shaw. Sam, who is four-years-old, is batting neuroblastoma and currently undergoing treatment. Becky Sumner, Daniel’s wife, follows Sam’s story closely. She is hosting the chest waxing event at her salon. lancashiretelegraph.co.uk.

Pajama Walk for Sam

It is inspiring to see all of the love and support surrounding Sam Shaw (who we mentioned in the above link). Sam’s cousin, Chloe Kenyon, just completed a walk to Darwen Tower in her pajamas to raise money for more vital treatments for Sam. Chloe recently went through her own surgery in January to have metal bars inserted in her spine to straighten it. Although the walk took a toll her on own strength, she completed it for Sam, raising almost £1,000. Congratulations, Chloe! lancashiretelegraph.co.uk.

Car Boot Sale for Sam

We told you Sam was feeling the love!! Saturday, April 28th, a car boot sale will take place in Pole Lane. Crystal Maitz, who is hosting the event, hopes that they will raise a nice chunk of money to donate towards Sam’s immunotherapy treatments, which could raise his survival rate by 20%. lancashiretelegraph.co.uk.

Neuroblastoma Expert to Lead Pediatric Dream Team

Dr. John M. Maris, MD is proud to co-chair the SU2C-St. Baldrick’s Foundation Immunogenetics Dream Team. Dr. Maris has had an interest in neuroblastoma since before he started medical school, and since starting his career, has been dedicated to finding a cure. Dr. Maris has led a team of scientists and clinicians since 2007 as the director of the Center for Childhood Cancer Research at Children’s Hospital of Philadelphia. Now, as the co-leader of the Pediatric Cancer Dream Team, Dr. Maris is hoping to discover new ways to help children with cancer fight back against the disease. The Dream Team is slated to start their first clinical trials in 2014. stbaldricks.org.

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On April 1, 2011, it was official: 2 ½-year-old Malia Dakota Jusczyk’s carefree life of Disney World and pony rides, soccer practice and swimming pools, came to a grinding halt. A CT scan revealed that Malia’s recent “tummy aches” were caused by a large tumor lodged in her abdomen. The solid mass wrapped around major blood vessels and pushed against her kidney and aorta.

A biopsy confirmed that Malia has a very aggressive childhood cancer known as stage IV (high risk) neuroblastoma. The cancer had metastasized into her bones and bone marrow (cranium, humerus, and femur). Immediately after the debilitating diagnosis, Malia’s parents, Megan and Glen, left Orlando, Florida in order to provide their daughter with the best treatment currently available to her at the Children’s Hospital/Dana-Farber Jimmy Fund Clinic in Boston, Massachusetts.

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Kids – Why We Fight

Johnny Losurdo

Johnny Losurdo was 4 weeks old when he was diagnosed with stage IV neuroblastoma. We could tell you his story, be he tells it much better! His essay won first place in the Teens Living with a Cancer Diagnosis category at the 4th annual Gilda’s Club chicago Teen Essay Award Reception. Congratulations, Johnny! suntimes.com.

Non-Profits / Events / News

Mother Raises Over Half a Million Dollars in Her Daughter’s Memory

Lucy Jones lost her 9 month old daughter, Sienna Hoffman, to neuroblastoma in 2010. Since then, Lucy has been dedicated to raising money to help fund neuroblastoma research. She has raised over $550,000 through her efforts – and she’s not done. She recently hosted the fourth annual fundraiser in Sienna’s name. heraldsun.com.au.

Running for Mollie

Emily Hall isn’t just raising money, she’s running for it! She laced up her first pair of running shoes recently and is planning to run in honor of 4 year old NB patient, Mollie Matthews. Emily is hoping to raise at least £10,000 by competing in this year’s London Marathon. Good luck, Emily! derbyshiretimes.co.uk.

Ninth annual McFlury Run/Walk

Onalaska High School’s Ninth Annual McFlury Run/Walk is taking place this weekend, 4/6/13. This year’s benefactor will be 4 year old Collin Anderson, who is going through treatment for neuroblastoma. Collin was an easy choice for the students at Onalaska High, as Collin’s mother is an alumni of the high school. Onalaska High students are eager to raise money to help with the Collin’s staggering medical costs. lacrossetribune.com.

Friendship Fuels Funding

At 8 years old, Alexa Sankary lost her best friend, 7 year old Michael Mancuso to neuroblastoma. She was by his side all through treatments, brightening his day with talk of driving cars and going to college one day. When Michael died, Alexa decided to carry on his memory by starting a 5k to raise money for research. This year The Blast 5k Run & Walk took place for the 6th time, raising more than $50,000. star-telegram.com.

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Kids – Why We Fight

Kevin Cordasco

Kevin Cordasco, 16, has sadly lost his battle with neuroblastoma. You may remember us telling you about Kevin a few months back, when he was named the honorary mayor of Calabasas. Kevin was diagnosed with NB when he was 9 years old. He fought through bone marrow transplants, surgeries, experimental drugs, chemo, radiation and several relapses – never losing his positive spirit and outlook on life. He inspired hundreds, teaching them how to “live life to its fullest and be kind to one another”, according to Calabasas Mayor Mary Sue Maurer. Our thoughts and prayers are with Kevin’s mother, father and brother. calabasas.patch.com.

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