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updated: 7/16/2014 10:37 AM

Bloomingdale foundation supports families fighting neuroblastoma

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Sometimes, it explodes into your life with symptoms that just can't be brushed aside. Your sweet toddler goes to bed one night seemingly healthy and wakes up the next morning unable to walk down the hall for a hug without falling.

Other times, it sneaks in disguised as something familiar -- a little recurring fever, or maybe some achiness or stomach pain. Maybe your little one just has the flu.

However it arrives, neuroblastoma always threatens the lives of its young victims and tears at the emotions of their families.

A tumor growing on and around developing nerve cells, neuroblastoma is a childhood cancer that strikes, on average, when a child is 2. When it is diagnosed, most often it already has spread beyond the initial tumor to lymph nodes, bone marrow or the liver or other organs. Nearly half of newly diagnosed children are already at Stage 4 of the cancer. Fewer than 40 percent of children with advanced-stage neuroblastoma survive for five years.

While aggressive, neuroblastoma is relatively rare. Of the 13,000 cases of childhood cancer diagnosed annually, 650 to 700 will be neuroblastoma.

With a disease so devastating and so rare, parents often feel isolated and unsure of where to turn for answers and support.

Patricia Tallungan knows the feeling well. Neuroblastoma took her son, Nick, when he was 10 years old. Her experience in trying to navigate tests, treatment, hope and grief led Tallungan to found the Children's Neuroblastoma Cancer Foundation, based in Bloomingdale and dedicated to supporting research, education, awareness and advocacy.

The foundation's 11th annual Parent Education and Medical Conference, running Thursday to Saturday, July 17 to 20, in Oak Brook, invites families worldwide to hear from experts about research, clinical trials, treatments and more.

"It provides our families with the knowledge to help make educated choices about their child's treatment. It fulfills our mission of education," Tallungan said. "Very few, if any, other foundations or organizations provide what we do for their families, including the adult cancer world."

Today, Tallungan tells us more about the foundation's efforts on behalf of children with neuroblastoma.

Q. What is your organization's mission?

A. To find a cure for neuroblastoma cancer through research funding, education and awareness programs.

Q. How do you work toward accomplishing that goal?

A. We have several fundraising events throughout the year as well as have families throughout the country who also do events for us. We fund research at hospitals across the country that specialize in neuroblastoma research.

We have an annual parent education program in the Chicago area. The foundation hosts and underwrites the event. We try to make it as affordable as possible for the families as they struggle with constant medical bills as well as losing incomes to care for their child. We bring together these families with the top neuroblastoma researchers to learn about current clinical trials being offered and current research being conducted. We have psychologists provide help on how to cope with having a child with cancer. We have late-effect specialists also talk about the issues these children may have later in life.

We have funded more than $2 million in research so far.

Q. Who do you serve?

A. We serve families whose children have been diagnosed with neuroblastoma. We serve families here in the United States as well as around the world with the development of our comprehensive Online Parent Handbook on Neuroblastoma and our Parent Education Program Symposium.

Q. When and why did the foundation start? How has it grown?

A. CNCF was started in 2000 after my husband, Milton, and I lost our 10-year-old son, Nick, to neuroblastoma. The lack of awareness, research and education prompted us to help the families who came after us find the resources they need to help make educated decisions about their child's treatment, to fund the desperately needed research, and to increase awareness in our communities about this dreaded disease.

Our reach is worldwide. Families from as far away as Australia attend our parent education program and families in Japan look to our parent handbook as a guide to help them through the journey.

Q. What kind of successes have you had?

A. We have funded more than $2 million in research so far. We work with several former NFL football players at our golf outings. We have worked with the Chicago Cubs and Chicago Blackhawks to participate at our fundraising events. Taylor Swift named the foundation as her charity for the CMT Music Video awards several years ago.

Q. What challenges does the foundation currently face?

A. Since we are a disease-specific organization, it is difficult for people outside of us to think about us. But neuroblastoma is one of 12 different forms of pediatric cancer and one of the deadliest. It strikes mainly infants and toddlers. We as parents and friends and family have to raise our voices and be heard for the little babies who cannot speak on their own. We hope to change this through awareness programs and fundraising events. The lack of awareness is a big challenge.

Less than 1 percent of the funded research from the American Cancer Society goes toward funding pediatric cancer.

Q. What do you wish the community at large knew about the organization? (or, what would surprise most people if they spent a week with the organization?)

A. Neuroblastoma is the most common form of cancer in infants. Its incidence rate is almost double that of leukemia. Many people don't think of little babies or toddlers getting cancer, but they do. And it can strike hard and with a vengeance. Most of the children are in an advanced stage of the disease at diagnosis. Fewer than 40 percent of the high-risk children will survive their disease.

We wish the community would agree to help us raise money and awareness for this disease. I know the bigger picture is for children's cancer in general, but several forms of pediatric cancer have a very high cure rate, like 85 percent to 90 percent. But sadly neuroblastoma does not. We want the funds and the attention to go where the need is and not where the numbers are, at least for a while.

We don't have celebrities who speak on our behalf like adult cancers do. We don't have huge concerts that raise funds and bring awareness. Why? I don't know.

Q. How can readers get involved?

A. Our biggest need is for fundraising events. We need help in organizing, planning and running the events. We need sponsorships, volunteers for those events and people to participate in them. We can always use donations.

Less than 10 percent of the grant requests presented to the National Institutes of Health are ever funded. That is for all diseases. That means that 90 percent do not get funded. That is why private philanthropy is huge to the medical community. They write up 100-page grant proposals for the government and get barely anything in return. We need to be there to help supplement what they don't get from the government. We need to have corporate America stand up and do its part for these kids and their families. Record profits are being made by many and what they could with even a tenth of a percent could go a long way in giving back to their communities and possibly their own employees.

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