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Julienne G. Edwards, a lawyer who became an outspoken advocate for health care for young adults, dies

Julienne G. Edwards earned a law degree and a master's degree in music.
Julienne G. Edwards earned a law degree and a master's degree in music. (HANDOUT)

Julienne G. Edwards, a lawyer who took her diagnosis of colon cancer and became an outspoken advocate for health care and for young adult cancer patients in particular, died Aug. 8 from the disease at her home in Millers. She was 30.

“Just remarkable. That is the best descriptor of Julienne and who she was,” said Angelica “Anjee” Davis, president of the nonprofit Fight Colorectal Cancer, whose headquarters are in Springfield, Missouri.

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“I first met her when I interviewed her for a job, and within two minutes I knew that she was a bright and talented person whose advocacy for policy change was for the greater good,” said Ms. Davis, a Springfield resident. "When she gave a presentation to cancer patients, she’d say, ‘Turn your pain into purpose, and your passion into action.’ I think that’s what continues to echo in the heads of all of us who think about Julienne."

“Julienne was a total force,” said Molly McDonnell, who through her Washington firm, Winning Strategies, is the policy representative for Fight Colorectal Cancer, an organization Ms. Edwards worked for from 2017 to 2018.

“She was incredibly bright, driven, kind and eloquent. She was a colorectal patient and had an incredible sense of commitment to this community,” Ms. McDonnell said. “She could draw on her own experiences and move things forward. She had an incredible sense of the bigger picture of the challenges and the challenges to the Affordable Care Act, which had real consequences for this community.”

The former Julienne Gede, the daughter of James A. Gede Jr., a lawyer and senior partner with Hogan Lovells US LLP, and his wife, Sharon D. Bailey, also a lawyer and a partner in Bailey & Edwards LLP, was born in Baltimore and raised on her family’s farm near Hampstead.

“Earlier in her life, she was known for her extraordinary singing voice,” her mother wrote in a biographical profile. “When she was 8 she was accepted as a member of the Peabody Children’s Chorus and remained a member for 10 years. At 14, she began her individual vocal studies with Carol Cavey-Miles and at 17, she was the best soprano in the state National Association of Teachers of Singing competition, going on to Raleigh, North Carolina to represent Maryland at the regional level.”

When Ms. Edwards was 18 and a senior at Hereford High School, she won the state Cappy Award for best female vocal for her performance in the school’s production of the musical “The Secret Garden.”

After graduating in 2007, she took a gap year before college and worked as a volunteer guide at the Handel House in London. During her time in London, Ms. Edwards participated in the effort that organized choirs of homeless people who lived in the streets and parks.

Ms. Edwards began her college studies at Carnegie Mellon University but then transferred to the Peabody Conservatory of Music, where she studied with American soprano Phyllis Bryn-Julson, who is chair of the conservatory’s voice department.

After graduating from Peabody in 2012, Ms. Edwards entered a joint degree program at the University of Miami, where she concurrently earned her law degree from its law school and a master’s degree from the Frost School of Music in 2015.

Two months later, Ms. Edwards, who was 26, was diagnosed with the stage 4 colorectal cancer that would eventually claim her life.

“I just generally didn’t feel well. I had anemia issues and what was thought to be benign ovarian cysts,” Ms. Edwards told WBAL-TV in a 2018 interview. “But it turned out to be something very, very different than that.”

“She was healthy and running half-marathons,” her mother said. “And by the time colon cancer was diagnosed, it was stage 4.”

After collapsing, she was taken to the emergency room, where she was told she was constipated.

“Even at that point of complete obstruction with a stage 4 colorectal cancer mass growing in my colon, it was still not seen as something possible for a 26-year-old woman,” Ms. Edwards explained in the WBAL interview.

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Each year 70,000 young adults from the ages of 19 to 39 are diagnosed with colon cancer, Ms. Bailey said.

After surgery at Johns Hopkins Hospital, Ms. Edwards completed her first round of chemotherapy in early 2016 and entered a brief period of remission. She studied and sat for the Maryland Bar, which she passed on her first attempt.

“Because of the Affordable Care Act, she was still on our health insurance policy, so her emergency surgery and subsequent chemotherapy treatments at the Sidney Kimmel Cancer Center at the Johns Hopkins Hospital were covered,” her mother wrote.

She briefly joined her mother in the practice of law but “soon found that her true calling was political advocacy for health care, and young adults in particular” her mother said.

Ms. Edwards’ first political rally was in 2016 at Bowie State University, where she took a piece of poster board and a Sharpee to explain her situation and credit the ACA for saving her life. Sen. Chris Van Hollen and Rep. Jamie Raskin, himself a stage 3 cancer survivor, recognized the young woman.

Not long afterward, she became a spokeswoman for the American Cancer Society and volunteered for Rep. Elijah Cummings’ reelection campaign.

Ms. Edwards worked alongside Carla Farrington, who was the campaign’s political director, at its Druid Park Drive office.

“Julienne was a volunteer, and one of my jobs was raising funds for the campaign and she assisted me in that. She was such a lovely person and a breath of fresh air. She just sparkled as a person and everyone loved her,” said Ms. Farrington, a Northwest Baltimore resident.

“At the kickoff rally in 2017, she put together and wrote a one-page sheet explaining to campaign volunteers where they could and could not place signs,” she said. “I remember at a 2018 fundraiser for Elizabeth Warren Julienne was so sick, but she came and made out name tags for everyone and when she had finished, went to the hospital.”

While Ms. Edwards was an unpaid volunteer, Ms. Farrington recalled asking her one day what in lieu of pay she would like and she said to have lunch with the congressman.

“So, we went to the Village Cafe in Cross Keys and had lunch,” she said. “Congressman Cummings was a great advocate for cancer patients and he just loved her. She explained to him why she was an advocate for young people and the ACA and their situation regarding insurance."

Ms. Farrington said Ms. Edwards did not dwell on her own medical situation.

“She spoke about it one time and said she ‘didn’t know why she ended up with this but I can’t dwell on it.' What she wanted to do was help other people; that was her outlook. She made the best of it and always used her own illness to help others.”

“The ACA had real consequences for her, and she was incredibly passionate about it and engaging with the political system. I’ve never met anyone quite like Julienne. When she came into a room, she was just captivating,” Ms. McDonnell said.

"And the way she shared her story, heartbreak, anger and the beautiful moments that came out as she made her journey, was such an inspiration to us and the patient community. Nothing could stop her,” she said.

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“She was hired by Fight Colorectal Cancer to be their grassroots volunteer leader,” her mother wrote in the profile. “She organized hundreds of volunteers to instruct them on effective strategies for the Fight CRC Call on Congress days.”

Other goals were to get Congress to allocate more funds for research, better screening policies, and access for patients suffering from the disease for treatment.

“She turned a terrible diagnosis into something positive and worked from the chemo chair, hospital, or in her car. Nothing would stop her,” Ms. Davis said. “Her death is a devastating loss. She was an incredible person and as an organization, we will never forget her.”

As her health continued to decline, Ms. Edwards made her last public appearance Aug. 9, 2018, at a preseason Ravens game at M&T Bank Stadium to sing “The Star-Spangled Banner.” What most listeners did not know was that she had been released two days earlier after a two-week hospitalization and that she was singing while still on oxygen.

Last year, Critical Mass: The Young Adult Cancer Alliance, in recognition of her advocacy, presented her with its Young Cancer Hero award.

“It’s actually hard sometimes to feel lucky in a situation like mine, but I got to marry that guy, and that guy takes care of me,” Ms. Edwards said, reflecting on her life and marriage in the WBAL interview. "So, I got to know without a shadow of a doubt, that I was marrying the right person, and I don’t think a lot of people get to know that for sure. That’s what I was thinking at that moment.”

Services were private.

In addition to her husband of four years, Alan Edwards, an accountant at Bizerba USA Inc., and her parents, Ms. Edwards is survived by a brother, Nathan Gede of Raleigh and several nieces and nephews.

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