Baby V. Fund Inspires Others to Make a Difference

When Vincenza was 9 months old, her parents knew something was wrong. She was experiencing flu-like symptoms, but nothing seemed to help. One day, her abdomen became severely distended and she was rushed to the hospital. After many tests, doctors informed her family that Vincenza had stage I hepatoblastoma, and that they had to start treatment immediately. With very few options available, her family decided to move forward with surgery. During the procedure, Vincenza’s tumor ruptured and her cancer diagnosis was elevated to stage 3. A better treatment was needed, and her parents eventually found a unique form of chemotherapy being studied at Memorial Sloan Kettering hospital in NY.

Disappointed by the lack of options available because Vincenza’s cancer was rare, and very little research was being funded, Tim decided to start the Baby V. Fund at CureSearch. The fund raises money to advance research on liver tumors and improve treatments, as well as giving the people around them a way to make a difference.

“I chose direct funding from our efforts to CureSearch because it became apparent to me that it is one of the few organizations addressing rare cancers and seeking to improve treatments for children. It is important to our family to ensure no one has to lose their child to cancer.”

Vincenza responded well to treatment and is now cancer free, but she and her family know that sometimes others are not so fortunate. Now 9-years-old, Vincenza is a spit fire who is passionate about her foundation’s cause. She tells everyone about the importance of funding children’s cancer research. Though Vincenza has been marked by cancer permanently, she doesn’t let it stop her from enjoying life. She and her family want others to be given the opportunity to live the life they dream of.

Tell us your story and how you are fighting back against children’s cancer by commenting below.

Children with Cancer Take to Capitol Hill

Patients, survivors, and families ask Congress to help children battle cancer

advocacy-web-2More than 150 childhood cancer patients, survivors, and their families were on Capitol Hill on Tuesday, June 18 to ask Congress to continue to support initiatives that can improve research, treatment and outcomes for children with cancer. As part of the second annual Childhood Cancer Action Day event, the Alliance for Childhood Cancer – of which CureSearch is a member – coordinated this day in an effort to advance important legislation that will benefit the 13,500 children newly diagnosed with cancer each year and the 360,000 survivors of childhood cancer in the U.S.

“Families from 31 states, each of whom is armed with deeply personal experiences that inspired them to travel to Washington, came to town to ensure that Congress understands the importance of supporting children with cancer and their families,” said Karen McKinley, PsyD, LCSW, co-chair of the Alliance for Childhood Cancer. In all, advocates ranging in age from 4-70 met with their Congressional Representatives and asked them to support the following bills:

  • H.R. 460, Patients Access to Treatments Act
    This legislation would require insurers to charge no more than what they currently charge for non-specialty tier brand drugs. For example, if an insurer is currently charging $30 for non-specialty tier brand drugs, and 50% of the price of a specialty drug (e.g. for a $7,000 drug like Gleevec, $3,500 patient out of pocket), HR 460 would require the insurer to charge no more than $30 for specialty drugs.
  • Caroline Pryce Walker Conquer Childhood Cancer Reauthorization Act
    Developed by Senator Jack Reed (D-RI) and Rep. Chris Van Hollen (D-MD), this bill would expand research of childhood cancers, improve efforts to identify and track childhood cancer incidences, and identify opportunities to expand the development and research of therapeutics necessary to treat children with cancer.
  • H.R. 2058, Childhood Cancer Survivors’ Quality of Life Act
    Introduced in the House by Rep. Jackie Speier (D-CA) on May 20, 2013, this legislation will provide resources for research and survivorship programs to improve the quality of life for all childhood cancer survivors, increase access to the long-term comprehensive health care services they need, and enhance understanding of the late effects of their childhood diseases and cancer treatments.

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Local Supermarkets Raise $19,000 for Children’s Cancer Research

No Frills Supermarket and Bag n Save continue tradition of helping in the community

No Frills Supermarket and Bag n Save are local icons in Omaha, Nebraska. This family owned company has a long traditional of helping those in need; they were thrilled to support the CureSearch Walk again this year.

In 2012, the company raised $10,000 through the sale of CureCards, $1 paper cards that act as a visual reminder of those affected by cancer, at 10 of their local stores. This year, they expanded their support to 31 stores, raising $19,200 to help fund innovative and targeted research aimed at advancing treatments and the search for cures.

The employees became personally involved in the campaign, often reminding fellow employees to ask customers to make a donation. Walk committee members acted as secret shoppers, visiting the stores with prizes for employees who asked them to make a donation to CureSearch.

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Day in the Life: Robin and Liz

Robin and LizRobin and Liz are social workers at the St. Christopher’s Children’s Hospital in Philadelphia, PA. They were lead to social work through different paths, but neither can imagine doing anything else. They believe that every patient is a unique chance to make a difference. CureSearch recently caught up with Robin and Liz to learn more about their role, and what led them to this profession.



Q: What led you to becoming Social Workers?

Robin: Both of my parents worked in the health care industry which gave me the opportunity to volunteer in a hospital. From a very young age, I would read case studies and became very interested in how families interacted and coped. I also was able to shadow social workers, and decided after that to become one.

Liz: In 1989 I had a daughter who was born a conjoined twin. A social worker helped me to deal with the stress of the diagnosis. I was so touched by her care that I knew this was what I wanted to do.

Q:What is an average day like for you at the hospital?

Robin and Liz: We work as a team to provide support and direction to patients and their families. A big part of our job is to change the way that a patient copes with a situation. We connect families with resources, whether it is organizations outside of the hospital, or information on treatment. Most of the day is spent talking to patients, trying to understand how they are feeling and finding ways  to help.

Q:What is your least favorite part of being a social worker?

Robin: Poor communication.

Liz: I agree with Robin. Poor communication can derail a treatment plan. We are constantly working to provide the best possible care, but if communication isn’t there, that is hard to do.

Robin: We believe that this job requires a team effort. Since we all function as a team, we all need to talk to each other to do our job.

Q:What is your favorite part of being a social worker?

Liz: When people trust you. That is huge. We work to provide a safe and trusting atmosphere, when that happens, people confide in you and you can really help them. We help them realize their fears and troubles, and help them overcome those. I love hearing families open up about the issues that they are facing.

Meet the Children: Carmello

Carmello 1

When Jasmin’s son, Carmello was two he started having breathing spells, where he held his breath for long stretches of time. Concerned, Jasmin took him to the doctor, who explained that they were just temper tantrums, and that he would eventually grow out of them.

Months later, the breathing spells returned. Jasmin took notes during each episode and shared them with Carmello’s doctor, who directed to them to a neurologist. After several tests, they were sent home without answers. Carmello continued to have breathing spells, became lethargic, bruised easily, lost weight and spiked high fevers. His doctors insisted it was a viral infection, but Jasmin knew something more was going on. Finally, they ran a blood test and found that Carmello had leukemia.

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Childhood Cancer’s Health Woes Persist for Years


June 11, 2013 (Wall Street Journal) — As advances in treating pediatric cancers allow more and more patients to live into adulthood, doctors are increasingly concerned about the long-term health effects of the very treatments that saved them as children.

Researchers found, in a large study of adult survivors of childhood cancer, that more than 95% suffered from a chronic health condition by the age of 45, including pulmonary, hearing, cardiac and other problems related either to their cancer or the cancer treatment.

Many serious health conditions went undiagnosed until the participants joined the study, the researchers found, raising questions about whether survivors are receiving proper follow-up care given their higher risks for certain health problems later in life.

“Doctors may not be thinking about a heart-valve disorder in someone in his 30s, but if you had radiation to your chest at 10, this is something to think about,” said Melissa M. Hudson, principal investigator and one of the authors of the study, which was published in JAMA.

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Omaha CureSearch Walker Honors Son

Marcy Grimm

Marcy Grimm, Omaha CureSearch Walk committee member, has been involved since the beginning and has watched the Walk grow. She and her fellow committee members, proud to see how the Walk has grown, are dedicated to honoring and remembering all those affected by children’s cancer.

On Saturday, June 1 thousands of walkers gathered together to celebrate the 8th Omaha CureSearch Walk. Fifty six teams worked together to raise more than $175,000 which tipped the event over the $1 million mark in its history. The funds these teams raised will support CureSearch’s mission to fund innovative and targeted research.

Marcy’s connection to children’s cancer is through her son, Ethan, who was diagnosed with a brain tumor in 1999 when heOmaha2013 was five. Ethan went through multiple rounds of chemoth erapy, a stem cell transplant, and various other treatments, but relapsed within a year of diagnosis. In 2005, Ethan was also diagnosed with leukemia, a side effect of the treatment he received for his brain tumor. Ethan amazed doctors when he survived the leukemia. Unfortunately, the brain tumor began to grow again a year later, and took his life in 2008. Because of her son’s experience, and that he did not survive; Marcy is driven to help find a cure for the 36 children diagnosed with cancer every day.

This year, as Marcy stood at the Walk, she stood among more than 1,000 people and sponsors, all committed to finding a cure for all children diagnosed with cancer. Sponsor No Frills Supermarket returned to support the 2013 Walk after raising $10,000 in 2012. This year, they expanded their involvement through their pin-up campaign, aimed at raising awareness and funds in the Omaha community. Even though the weather threatened to put a damper of the day’s events, it didn’t. Walkers enjoyed entertainment from clowns, magicians, PGA golf swing challenges, a visit from a fire truck, food and more.

To find a local CureSearch walk near you, visit and show your dedication to the fight against children’s cancer.