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A Quad Cities organization that began with a daughter’s promise to her dying mother now has reached tens of thousands of people across the country with its message of educating people about ovarian cancer – often called the “silent killer” of women. That daughter – Jodie Shagrin Kavensky – is the powerful and passionate voice behind the NormaLeah Ovarian Cancer Initiative. A virtual walking encyclopedia of facts about the latest research on the disease that is projected to strike almost 20,000 U.S. women this year, she will pivot quickly at any moment to give a hug or make a phone call to survivors and their families. While September is Ovarian Cancer Awareness Month, NormaLeah’s work is a year-round relentless effort of early detection education, patient support services and research funding for ovarian cancer – the disease that took the lives of her mother, Norma Yecies Shagrin, in 2008, and her aunt, Leah Yecies Hantman, in 1998. Ms. Kavensky said she told her mother, “I promise you someday I will become the voice of all of those who have been silenced by this disease.” A teal-framed girlhood photo of sisters Norma and Leah hangs near the front door of the organization’s Rock Island office, which is an explosion of teal (ovarian cancer’s awareness color). Ms. Kavensky points to a stack of packages prepared to go out to locations throughout the United States. In the packages are NormaLeah’s “BEAT the Big O,” or BEAT cards, which list symptoms that women should be aware of as possible signs of ovarian cancer. The cards have a strip of adhesive on the back, with encouragement to mount the card on a dressing or bathroom mirror. Ms. Kavensky estimates that a half-million of the cards have been distributed since 2011. Recently, NormaLeah sent 2,500 cards to the Sigma Alpha Omega sorority at Clemson University in South Carolina. The Christian sorority, with chapters at 34 colleges and universities, has targeted ovarian cancer awareness as its national philanthropy, and NormaLeah has been one of the beneficiaries of their fundraising. NormaLeah has raised more than $1 million since it began in 2011. “All of that goes to educate people with ovaries and those that love and care for them,” Ms. Kavensky said. “If I have the knowledge, I want to share it. Why should someone else have to suffer like my mother did, and how so many women do?” The funds support many education programs, some of which have reached regional and national audiences. One of them is a video called “Rule Out!” Aimed at educating healthcare professionals on risk factors, symptomology and risk reduction strategies, it is offered through Rush University Medical College in Chicago. The organization also has forged a strong relationship with the University of Iowa healthcare system, whose gynecologic oncologists provide treatment for Quad-Cities and other ovarian cancer patients. There is now a UI Women’s Health facility in Davenport, which is staffed by gynecologic oncologists on a rotating basis. In the Quad Cities region, Mrs. Kavensky has made presentations to hundreds of students at Palmer College of Chiropractic and works with Gilda’s Club Quad Cities on survivor support. Comedian and actress Gilda Radner died of ovarian cancer in 1989 at the age of 42. The “heart” of NormaLeah lies in its unwavering support for “teal sisters”–ovarian cancer survivors – and their families. Heather Tahja of Moline, an ovarian cancer survivor who was diagnosed at age 37, has felt the compassionate warmth and support of the NormaLeah network. The mother of three noticed an unusual heaviness in her abdomen in December of 2017 while celebrating the holidays in Minnesota with relatives. She thought it might be a hernia. But the heaviness became overwhelming on the drive back to the Quad Cities, and she called her doctor. Emergency surgery on Jan. 2, 2018, revealed a 14.5-centimeter tumor on one ovary. At first she was told the tumor was benign. But seven days later, Ms. Tahja received a call back from her doctor with the news that it was a mixed germ cell ovarian cancer. She was sent to a gynecologic oncologist at the University of Iowa and began 150 hours of infused chemotherapy. Someone who commented on her Facebook post after her diagnosis tagged NormaLeah. Ms. Tahja reached out and sent a message. That same night, Ms. Kavensky called her. “My first real memory of her was her compassion in reaching out to me,” Ms. Tahja said. The link with NormaLeah introduced her to an entire network of support, including a woman who came to Iowa City and held her hand throughout her first chemotherapy treatment. Ms. Kavensky also connected her with a woman from Chicago, about the same age as Ms. Tahja, whose cancer shared some similarities and who was undergoing the same chemotherapy regimen. Today, Ms. Tahja has gone almost five years with no evidence of the disease. She and her husband, Matt, serve on the NormaLeah board, and her initiative to share online stories of survival called “Made to Conquer” has reached a wide audience and raised funds for the organization. “Without NormaLeah, I would not be where I am today,” she said. “NormaLeah gave me something that the others were not able to in terms of hope.” And of Ms. Kavensky, she says: “She is just such a rare gift to this world. She continues to fight and charge forward.” Ms. Kavensky is candid in talking about her own health. Having the genetic predisposition for ovarian cancer, she is a prime example of someone who is doing all she can to reduce her risk. She said she has had prophylactic surgery to remove her ovaries and fallopian tubes and has three tests done annually that are recommended for high risk and symptomatic women. She calls herself a “previvor.” While ongoing research has produced new and better treatments for ovarian cancer since her mother died, there are still grim statistics, including that 1 in 78 women will develop ovarian cancer. There are 35 different types of ovarian cancer, she said, “which is what makes it hard to diagnose and makes it even harder to treat.” And with symptoms that mimic many other diseases, education and early detection are critically important. “Education is the key,” Ms. Kavensky said. “With people being more proactive, that will go a long way.”
NormaLeah programsThe NormaLeah Ovarian Cancer Initiative offers a number of programs, in addition to its popular BEAT the Big O symptom cards. More information on its programs can be found at www.normaleah.org or by calling (309) 794-0009. NormaLeah also can be found on Facebook. The programs include:
- Sisterly Advice: These sessions help participants recognize ovarian cancer’s subtle symptoms, assess their personal risk and explore risk reduction strategies. They can be scheduled for groups.
- Girl Parts project: This collaboration between NormaLeah and the arts community has created a number of artistically designed torsos to raise awareness of ovarian cancer’s genetic relationship to other cancers, especially breast. Groupings of the stunning artwork will be offered for temporary display in museums, including in NormaLeah CEO Jodie Kavensky’s hometown of Youngstown, Ohio. They also will be on display in the NormaLeah tent at the Riverssance Festival of Fine Art, Saturday and Sunday, Sept. 17 and 18, in the Village of East Davenport.
- Sister Strong: This program provides resource, referral and supportive care to survivors and those who are symptomatic or at high risk.
- Sisterhood of the Teal Tiaras: These are volunteers who help with the NormaLeah mission. There are about 30 volunteers at present. The organization recently hired Jeannie Sawyer as a full-time administrative support specialist.