A Scottsdale philanthropist has donated $50,000 to the Phoenix-based Translational Genomics Research Institute and the Van Andel Research Institute in Grand Rapids, Mich., to begin a study on a rare form of ovarian cancer.

Foster Friess, the founder of Brandywine Funds and who has homes in Scottsdale and Jackson, Wyo., has previously given $300,000 for ovarian cancer research. his latest donation is in memory of Taryn Ritchey, the daughter of his personal assistant, Jody Jost of Cave Creek.

Ritchey, 22, died in 2007 of small-cell carcinoma of the ovary. the cancer strikes fewer than 250 women per year.

“Taryn’s dying wish was to be able to help other young women so they won’t have to go through what she went through,” Jost said in a statement.

Tom Benford of Peoria plans to donate to the project a portion of the proceeds from sales of his new book, “Standing Tall,” inspired by his daughter, Andrea Benford Theis, 31, who died of SCCO in 2006.

TGen’s head of breast and ovarian cancer research, Dr. Heather Cunliffe, said SCCO has been tagged a silent killer because the symptoms, such as abdominal pain and nausea, are vague and easily misdiagnosed.

Also, doctors may consider ovarian cancer as a possible cause of such symptoms in women who have completed menopause because that’s when most ovarian cancers typically strike, she said.

But SCCO is unusual in that it emerges in much younger victims; the average age of diagnosis is 24. This means doctors are less likely to consider ovarian cancer as a cause until it has spread.

Even if doctors do catch it in its early stage, SCCO is resistant to chemotherapy and fast-spreading, Cunliffe said.

“Almost all patients die within one to two years,” she said.

Cunliffe said she has been wanting to study SCCO to identify a potential genetic commonality in tumors that could lead researchers to create a successful treatment.

“I was contacted by the loved ones of women who have been lost to SCCO to ask if there is anyone anywhere doing any research on SCCO,” she said. “The answer is: no.”

To obtain samples of tumors from SCOO victims and patients who have been recently diagnosed, TGen and VARI researchers created a secure website, tgen.org/scco, where families or patients can download forms to take to physicians to fill out so they may produce a tumor tissue sample and ship it to the institutes’ labs.

Cunliffe said researchers do not know the women’s identities. Tissue samples are assigned a number.

Cunliffe is the principal investigator. she is working with researchers Dr. Brian Haab, head of VARI’s Laboratory of Cancer Immunodiagnostics; Dr. Kyle Furge, head of VARI’s Laboratory of Computational Biology; and Dr. Jeffrey Trent, president and research director of both TGen and VARI, who also leads an active cancer research laboratory.

International businessman and philanthropist Foster Friess has donated $50,000 to help launch a study of small cell carcinoma of the ovary (SCCO) by the Translational Genomics Research Institute (TGen) and the Van Andel Research Institute (VARI).

Friess made the donation in memory of Taryn Ritchey, 22, who in 2007 succumbed to SCCO, a rare and extremely aggressive cancer that strikes women in the prime of life.

“Taryn’s dying wish was to be able to help other young women so they won’t have to go through what she went through,” said her mother, Judy Jost of Cave Creek, Ariz., who works as a personal assistant to Friess.

Friess, who splits his time between Jackson, Wyo., and Scottsdale, Ariz., previously donated $300,000 to TGen for ovarian cancer research.

In addition, Tom Benford of Peoria, Ariz. – whose daughter Andrea Benford Theis, 31, died of SCCO in 2006 – plans to donate a portion of the proceeds from sales of his new book, Standing Tall, to the research project. Inspired by Andrea’s illness, the book is about what it takes to get through any kind of life-changing crisis.

Benford, part of a growing network of families affected by SCCO, said he hopes the new TGen-VARI study will draw information from the death of his daughter and other victims of SCCO that could lead to effective treatments for this disease. “These are young women, most of whom have lost their lives. Now, their tumor samples can contribute to this new study. I feel blessed that my daughter is part of it.”

SCCO primarily affects adolescent girls and young women, ranging from age 9 to 43. The average age for onset of the disease is only 24. The chance of survival is extremely poor, even when the disease is diagnosed at an early stage.

SCCO tumors are very rare, accounting for less than 1 percent of all ovarian cancers diagnosed. The cause and progression of the disease is not understood, and in almost all cases it has proven resistant to conventional treatments.

“The loved ones of women taken by this rare disease have recently come to both TGen and VARI looking for answers based on new research evidence. unfortunately, very little is known about SCCO. We intend with this new study to discover the genetic and molecular underpinnings of this disease and find new and effective ways to treat it,” said Dr. Heather Cunliffe, head of TGen’s Breast and Ovarian Cancer Research Unit and the study’s Principal Investigator.

Other investigators include: Dr. Brian Haab, head of VARI’s Laboratory of Cancer Immunodiagnostics; Dr. Kyle Furge, head of VARI’s Laboratory of Computational Biology; and Dr. Jeffrey Trent, President and Research Director of both TGen and VARI, who also leads an active cancer research laboratory.

“besides studying the most common diseases that afflict humanity, TGen and VARI specialize in rare, or orphan, cancers. We can use our advanced genomic technologies to better examine the origins of rare cancers like SCCO, and give patients hope for better outcomes in the future,” Dr. Trent said.

The first goal of the study is to collect SCCO tumor and blood samples.

TGen and VARI researchers will examine tumors and blood samples using advanced genomic approaches. They will attempt to understand the molecular forces that likely drive onset, rapid progression and drug-resistant nature of this disease. Researchers also will study how SCCO differs from more common forms of ovarian cancer.

Symptoms of ovarian cancer include bloating, pelvic or abdominal pain, trouble eating or feeling full quickly, the need to urinate urgently and often. SCCO patients commonly also experience symptoms of nausea, vomiting and fatigue. Ovarian cancer is not detectable through routine Pap smears. There currently is insufficient molecular evidence to propose an effective targeted treatment.

SCCO tumors range about 2-10 inches in length, and average about 6 inches. The tumor cells grow extremely fast. currently, the surgical removal of both ovaries and the uterus is the standard treatment in the early-stage SCCO patients. For the higher stage or recurrent tumors, multi-agent chemotherapy and radiotherapy show some improvement in survival. Despite aggressive chemotherapeutic treatment regimens, nearly 3 in 4 SCCO patients succumb to their disease within 1-2 years of diagnosis.

Source: Steve Yozwiak The Translational Genomics Research Institute

Source: medicalnewstoday.com/articles/208700.php