Category Archives: Pediatric Cancer

$100,000 donated to support REST study

Alex’s Army is incredibly pleased and humbled to have presented a check to Dr. Jeffrey Dome, MD, PhD, in the amount of $100,000.00 to Children’s National on Thursday, Dec. 29th, 2016.

Dr. Dome is the chief of the Division of Oncology and the Division of Hematology and is also the chair of the Renal Tumor Committee for the Children’s Oncology Group (COG). He oversees clinical trials for Wilms tumors and other childhood kidney cancers in more than 200 children’s hospitals. He holds the Thomas Willson & Lenore Williams McKnew Professorship in Pediatric Oncology and has authored more than 30 articles and textbook chapters on pediatric kidney tumors.

Funding from this grant will support the REST study which is an immunotherapy trial for patients with high-risk solid tumors including Ewing sarcoma, Wilms tumor, Neuroblastoma, Rhabdomyosarcoma, Soft tissue sarcomas, Osteosarcoma, and Adenocarcinoma. The idea behind the study is to harvest T-cells from patients, grow them in a lab, and “train” the cells to target the WT1 protein (and two other proteins called survivin and PRAME). Once the cells are “trained” to target these proteins, they are given back to the patient in hopes of better fighting off the cancerous cells. An impact report will be provided for updates on the study progress.

Witnessing firsthand the harsh effects of chemotherapies on our children, we have great interest in helping to fund less toxic treatments that will reduce long term side effects for pediatric patients. This type of immunotherapy trial was a perfect fit to the type of research Alex’s Army was hoping to support with our 2016 research funding. Our Board voted unanimously on funding this trial and on Thursday members of Alex’s Army traveled to DC on Thursday to meet with Dr. Dome and his team.

This donation was made in memory and honor of our sweet Alex – and too many other children who have had to leave us too soon. This check was ONLY possible because of the ARMY of supporters who this past year have prayed, sponsored, donated, and come alongside our organization to make a difference for children and families impacted by various childhood cancers. We thank everyone who helped make this possible truly from the bottom of our hearts. While this trial came too late for our sweet Alex, who as many of you know passed away in June of this year, we are hopeful and will be prayerful that this treatment will bring researchers a few steps closer to finding cures and that the patients who have the opportunity to enroll in this study will find healing.

It takes an ARMY to fight childhood cancers and TOGETHER we are Alex’s Army!

Alex’s Army is a 501(c)3 non-profit organization whose mission is to raise awareness to the lack of funding for childhood cancers, to provide funding to further research with a focus on Wilms Tumor, and to provide support for the childhood cancer community through faith, hope, and love.

New Data Shows a Child Is Diagnosed With Cancer Every 2 Minutes

According to new research done by WHO’s International Agency for Research on Cancer (IARC), about 215,000 children worldwide — from infants to 14-year-olds — are newly diagnosed with childhood cancer each year.

That’s a big jump from their last study, which showed about 165,000 new cases of childhood cancer each year.

On top of that, the new study found that 85,000 adolescents — from 15-year-olds to 19-year-olds — are being diagnosed each year, bringing the overall incidence of childhood cancer to 300,000 kids per year.

But what do these new numbers really mean?

They mean that every two minutes a child is diagnosed with cancer.

They mean that childhood cancer research — and more funding for it — is more crucial than ever before.

Read more…

Finding A Cure Wouldn’t Mean We’ve Defeated Cancer

When President Barack Obama announced the $1 billion moonshot initiative in February, he appointed Vice President Joe Biden, whose 46-year-old son Beau died of brain cancer last year, to be the project’s steward.

“Right now, only 5 percent of cancer patients in the U.S. end up in a clinical trial,” Biden wrote in Medium in January. “The science, data, and research results are trapped in silos, preventing faster progress and greater reach to patients. It’s not just about developing game-changing treatments  —  it’s about delivering them to those who need them.”

Wednesday’s National Cancer Moonshot Summit, which harkens back to Richard Nixon’s 1971 “war on cancer,” is a national day of action led by Biden to crowdsource strategies for accelerating cancer-curing research from more than 350 scientists, oncologists, data and tech experts, patients, families and advocates across the country.

While the summit is a first step toward the moonshot’s expressed goal of doubling the current rate of progress toward a cure for cancer, there has been noticeably little discussion among politicians, advocacy groups and other stakeholders of what curing cancer actually means.

A spokeswoman for Biden said that the summit incorporated a discussion on survivorship, but declined to comment on the record about specific ways the moonshot would address the issue.

Critics called the initiative oversimplified, and emphasized that because cancer is many diseases, not just one, it’s unrealistic to push for a single cure. Others pushed back on the initiative’s meager budget.

“Let’s be honest,” Ezekiel Emanuel, oncologist and chair of the University of Pennsylvania’s Department of Medical Ethics and Health Policy, told STAT. “There’s not that much money in the moonshot. I just don’t think it is going to have that big an impact.”

Later in January, the vice president added, “I said I believe that we need an absolute national commitment to end cancer as we know,” he said. “I’m not naive, I didn’t think we could ‘end cancer.’ I’m not looking for a silver bullet. There is none.”

Survival is also more complicated than being cancer-free, a concern that’s rarely included in well-meaning, but oversimplified political initiatives and awareness months. Survivors’ stories, particularly those of childhood survivors who have had the longest tenure with cancer and its side effects, could help broaden the focus of the moonshot aims by highlighting their experiences of what life after cancer is like.

Read full article (huffingtonpost)

This sweet 7-year-old gave his hair to cancer patients, then life took a devastating turn

Seven-year-old Vinny Desautels learned about cancer for the first time because his mother, Amanda Azevedo, was helping survivors of the disease get ready for a gala. She is a hair stylist who volunteered with a local lymphoma foundation, doing the hair of former cancer patients before they arrived at an annual benefit event.

As Azevedo was leaving one year, Vinny asked, “Hey Mom, what are you doing?”

She explained to her youngest son, as best as she could, the ruthlessness of cancer. Fighting the disease often meant losing your hair, Azevedo said, and this was a tough outcome, particularly for young women. She was just doing something small to help.

Hearing this, Vinny wanted to help, too. “Can I grow my hair out?” he asked.

For the next two years, the Roseville, Calif., kid with a toothy grin sported long brown locks that invited teasing on the playground. “He was mistaken for a girl many times,” his father, Jason Desautels, chuckled in a phone interview with The Washington Post late Monday. “He always took it like a champion.”

Read full story here.

 

Buster and Kristen Posey join fight against pediatric cancer

The Poseys plan to help raise money and awareness for pediatric cancer research and will appear together at a Wednesday news conference at AT&T Park to announce the focus of their philanthropic efforts.

“Kristen and I have been blessed with two healthy kids and the opportunity to contribute to the community in a meaningful way,” Posey said in a statement.

The Poseys plan to focus on awareness, fundraising and patient/family support, and will work with the Giants to organize activities and host events at the ballpark.

“We were shocked to learn that only about 4 percent of cancer funds raised throughout the country are dedicated to pediatric cancer research,” Posey said, “and we felt compelled to lend our voices to this important cause.

“Our hope is that by working with the doctors, patients and their families, we can raise significant awareness and funds for pediatric cancer research and treatment.”

The Poseys will partner with ESPN broadcaster Dick Vitale, an advocate in the fight against pediatric cancer, for a Sept. 14 fundraiser at the ballpark that will benefit the V Foundation and Bay Area pediatric cancer programs.

The Poseys will host another event Sept. 17, the Giants’ Pediatric Cancer Awareness Day.

On Wednesday, New Era will unveil the Buster Posey Pediatric Cancer Awareness 9FORTY cap, the proceeds of which go to support research and treatment. The cap features the gold ribbon for Pediatric Cancer Awareness and the Giants’ logo.

Once a month, the Poseys will host patients receiving treatment at Bay Area hospitals and their families, who’ll be invited to a game as well as a pregame visit with the Poseys.

Original article

Childhood Cancer Survivors Tend To Have Lower Quality-Of-Life Scores

Battling cancer takes a lot out of a person’s health and overall well being. A new study shows that adults who have survived cancer during childhood feel older than their age, and generally have lower quality-of-life scores when it comes to health.
Dr. Lisa Diller, chief medical officer of Dana-Farber/Boston Children’s Cancer and Blood Disorders Center, is the senior author on the study. She says, “Our findings indicate survivors’ accelerated aging, and also helps us understand the health-related risks associated with having had cancer as a child.” Diller adds, “What’s encouraging is that the lower quality-of-life scores are associated with chronic disease after treatment, not with a history of pediatric cancer itself.”

As per UPI’s report, the research team gathered data from pediatric cancer survivors in the USA. Overall quality-of-life scores in relation to health were found to be similar among the age demographics of 18-29 years old and 40 years old.

Patients who had experienced more chronic health problems after surviving cancer tended to have lower quality-of-life scores. Referencing another study on childhood cancer survivors, Diller and her team found that only 20% of 7,000 respondents had no chronic conditions.

Studies have shown that cancer survivors are at high risk for heart disease, other forms of cancer, infertility, lung problems, autoimmune diseases, and other similar chronic conditions. These risks are primarily associated with cancer treatment methods such as radiation, chemotherapy and surgery.

Diller goes on to explain that her team’s findings provide a concrete comparison between adults who have survived pediatric cancer and the general population, in terms of quality of life.

Original article