Caring for Carcinoid Foundation story

Feature: Caring for Carcinoid Foundation-NET Cancer-neuroendocrine cancer-NET Cancer Awareness Day

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Foundation seeks better NET cancer treatment options

By Phil Devitt

BOSTON — Lauren Erb never knows who’s on the line when she answers the phone, but each call reminds her of her mission. She wants to eradicate a hard-to-detect form of cancer that doesn’t get enough funding or attention.

“The patients and their loved ones keep me going,” she says. “They call all the time. It keeps you motivated. Our patients deserve better treatment options.”

Erb is executive director of the Caring for Carcinoid Foundation, a Boston-based non-profit that raises money for neuroendocrine cancer research. Neuroendocrine tumors can form anywhere in the body, but often take shape in the digestive system. They are often described as slow-growing and are difficult to diagnose and treat. They also can produce excess hormones, sending the body into overdrive with a range of other more noticeable clinical symptoms.

Because so little is known about these cancers and because they are considered rare — the foundation estimates that 100,000 people in the United States are living with neuroendocrine tumors — raising awareness and drumming up support for research can be challenging. CFCF has taken up the challenge every day since 2005, raising more than $6 million for research nationally and internationally. The foundation boasts a website loaded with comprehensive information for patients, caregivers and the medical community. And there is still so much to grasp.

“The more we learn, the more we have to learn,” Erb says.

The foundation receives funding through individual donations and year-round fundraisers across the country — walks, runs, bike rides, dinners, auctions and golf tournaments, to name a few. CFCF empowers people to create their own fundraisers and links them to a website that funnels money raised directly to the cause. CFCF has raised nearly $500,000 from 310 grassroots fundraisers since 2006, according to the site.

“Raising money is a challenge,” CFCF Chief Development Officer Ellen Eisner says. “There are a million non-profits in the U.S. alone, each one trying to grab their own slice of the pie. We’re up against many other compelling causes, each worthy in their own right. Typically, the people who are going to fund our research are people in the neuroendocrine cancer community – patients and their loved ones.  Being a rare cancer, we’re working with a very small subset of the population.”

A key fundraising challenge is educating donors about the importance of scientific research. Without a focused and systematic approach to research, cures and effective treatments will remain elusive, Eisner says.

CFCF was founded by a woman who believes research will make all the difference. Nancy Lindholm was a vibrant 29-year-old Boston tax attorney when she collapsed on the subway. At Massachusetts General Hospital, she was informed of multiple tumors on her liver and given months to live. She learned that the fatigue and severe abdominal pain she had endured for years were caused not by stress, but carcinoid cancer, a neuroendocrine cancer that often originates in the gastrointestinal tract.

Lindholm twice had tubes put into her liver to cut off blood supply to tumors. She participated in two clinical trials, but neither shrank the tumors. Regardless, she beat expectations.

“I am thankful to be alive, but I am greatly disappointed there is no cure,” she says on the CFCF website. “I know the lonely feeling of fighting an incurable cancer that receives little governmental research funding and little pharmaceutical company interest. I also know that greater insight into neuroendocrine cancer will result in greater insight into other cancers such as gastrointestinal and prostate.”

And the research is paying off.

“Over the last five years, we’ve seen an increased pool of talented scientists and clinicians studying these cancers,” Erb says. “Recent scientific breakthroughs bring momentum to our research efforts to rapidly advance new therapies for our patients.”

CFCF simultaneously funds three types of research, Erb says. The first is “basic science” — understanding the cells and pathways that give rise to neuroendocrine cancers. The second is clinical or translational research — taking findings from lab to patient, often by testing the effects of drugs on models. The third is genomics research, which has scientists comparing the DNA of tumor cells with that of normal cells to find out what causes the cancer to develop. The foundation is supporting two genome projects at the moment — one for carcinoid cancer and the other for pancreatic neuroendocrine cancer, Erb says.

“I truly believe this is a hopeful time for patients,” Erb says. “Scientists are making rapid progress each day. Despite all the reasons one could be discouraged, there are many reasons to be hopeful as well.”

This story provided by Walking with Jane. Inc., a 501 (c) (3) non-profit dedicated to eradicating NET cancer. For more information about NET cancer or Carcinoid Syndrome contact walkingwithjane@gmail.com or visit our website at walkingwithjane.org.

 

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