But the more Takai-Day learned the dismal statistics about the disease -- pancreatic cancer is one of the deadliest forms of cancer with a five-year survival rate of just 9% -- she decided it was her turn to become an advocate.
"I found if I came I would have an impact because a lot of his colleagues are still here. They knew Mark, there's a personal touch to this," she told CNN in between visits with lawmakers on both sides of the Capitol, including those from her family's home state of Hawaii, and her current home state of Illinois.
In the current political climate cancer research may be one of the few issues that unites Republicans and Democrats on Capitol Hill against President Donald Trump's proposed budget cuts. Earlier this year when the Trump administration included a roughly 20% budget cut to the National Institutes for Health it was ignored by the GOP-controlled Congress and the eventual budget deal that the President signed included a $2 billion boost for the agency in the final deal for part of 2017.
A former colleague of Takai's, retired Ohio Republican Rep. Steve LaTourette, also died from pancreatic cancer last year, and members from both parties told advocates visiting from all 50 states that they all had a personal connection with some form of the disease and are committed to continuing the effort to inject more federal resources into medical research.
Leaders of both parties celebrated the passage last year
of the "21st Century Cures Act," a measure signed by then President Barack Obama and championed by his vice president, Joe Biden, who lost his son Beau to brain cancer.
Budget cut concerns
Even conservatives on the right making a major push now in next year's budget to implement wide ranging cuts tell CNN that cancer research is one area they don't think should be on the chopping block.
"As you look at those numbers, even in my conversations with the President, he wants to make sure we have adequate types of money for that type of research," Rep Mark Meadows, who heads the conservative House Freedom Caucus Meadow, told CNN about direct talks with Trump.
But the Trump administration's budget proposal delivered to Congress in May proposed a $5.8 billion cut for NIH
, and top administration officials say there is room to trim medical research programs.
"Cancer research is for cancer research and should not go to building facilities, which is why the budget limits administrative costs ensuring that more money goes directly to helping patients," an official from the Office of Management and Budget told CNN in a written statement.
Julie Fleshman, the president and CEO of "PanCAN," the Pancreatic Cancer Action Network that sponsored an advocacy day on Tuesday, told CNN they are determined to head off any reductions, and after hundreds of meetings on Capitol Hill on Tuesday, "there is a lot of opposition to the administration's budget cuts."
She stressed that a combination of private and public money is critical for the pancreatic cancer community that is desperate to launch more studies to turn around the poor outcomes patients have because of few treatment options and difficulty detecting the disease. "We will fill in the gaps but there is a role for the federal government."
Keeping the pressure on Congress
PanCAN recently launched a privately funded clinical trial platform called "Precision Promise," investing $35 million with the goal of starting to enroll patients in trials by 2017. Currently only 4% of those diagnosed with pancreatic cancer participate in experimental drug trials, a statistic that is in line with other types of cancers where these types of research are often the key to finding new treatments that can improve the quality of life, or even extend it for some.
But as more than 650 family members and pancreatic cancer survivors blanketed offices of lawmakers from all 50 states, the goal was to keep pressure on Congress, which is struggling to come to consensus on a budget deal, to keep the budget knives away from medical research.
Oklahoma Republican Rep. Tom Cole, a senior member of both the House budget and appropriations panels opposed the administration's efforts earlier this year, told CNN he was confident the next budget won't slash agencies like NIH.
"It's not going to happen," Cole said. He pushed back on the argument that administrative costs could be cut and predicted there will actually be some type of increase in a final budget deal.
For advocates like Takai-Day the statistics can be very disheartening. Pancreatic cancer is on track to become the second leading cause of cancer-related deaths by 2020. Despite its low survival rates relative to other types of cancer, it received $121 million in 2017 from the National Cancer Institute, compared with $529 million for breast cancer, a disease that has significantly increased survival rates in recent years.
"We shouldn't be telling somebody, especially with a disease, that you have this much time and that's it -- you have no hope," Takai-Day stressed, saying "that's unacceptable, that's totally unacceptable."
Takai-Day works as a physical therapist, and other than occasionally volunteering on her brother's campaign doesn't have much political experience.
But with so few who survive the disease, Takai-Day carried a binder with her brother's official congressional photo on it to remind lawmakers and staff of his story, saying she was glad she traveled back to Washington. She avoided criticizing the Trump administration and instead remarked that it was a little surprising that after watching groups of advocates coming through his office when she visited him during his tenure she had become a lobbyist herself.
"I'm just one person, but Mark was one person," and referring to members of Congress who appear, at least for now to come together on this one issue, said, "they have to do something -- that's the bottom line."