[Congressional Record Volume 167, Number 205 (Monday, November 29, 2021)]
[Senate]
[Pages S8778-S8779]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                         REMEMBERING JACE WARD

 Mr. MARSHALL. Madam President, today I wish to recognize a 
fellow Kansan, Jace Ward, for his incredible fight against cancer, 
inspiring advocacy work, and unyielding display of hope in the face of 
a terminal illness. At the age of 22, Jace passed away surrounded by 
family and friends, and today, I commemorate the remarkable 
accomplishments during his short life.
  Jace was born on February 18, 1999, in Wichita, KS. He enjoyed a 
fantastic childhood in Inman and then moved to Wamego at age 12, where 
he excelled in school and extracurricular activities. After graduating 
from Wamego High School in 2017, Jace attended the University of 
Kansas, studying law and business with scholarships under the Law 
Education Accelerated Degree Program and the Business Scholars Program.
  Following a rollover car accident in February 2019, Jace started to 
experience eye problems. After an MRI, it was revealed that Jace had an 
aggressive and particularly deadly form of brain cancer called diffuse 
intrinsic pontine plioma, DIPG. It generally affects children between 
the ages of 5 to 9 and has no chance of survival as no effective 
treatment exists. In fact, only 10 percent of patients survive 2 years 
after their diagnosis, and less than 1 percent survive past 5 years. 
Despite these unforgiving odds, Jace decided to make the most of the 
time he had left.
  After being diagnosed with DIPG, Jace transferred to Kansas State 
University--KSU--on scholarship and majored in business 
entrepreneurship. He was awarded a bachelor of business administration 
degree posthumously from KSU, but while he was studying, he also 
championed advocacy and awareness for pediatric cancer.
  While attending KSU, Jace worked vigorously for California-based 
Emerson Collective as a member of the Health Team, which focuses on 
advocating and investing funds to combat rare cancers like his. As a 
member of this organization, he visited with Federal officials in 
Congress and various agencies at the U.S. Department of Health and 
Human Services to raise awareness. Notably, Jace delivered a keynote 
address at a congressional briefing on DIPG, spoke to the NIH on 
patient ownership of genomic data, and met with over 67 congressional 
offices, including mine. As a Member of the House of Representatives 
and his Congressman, I cosponsored a House resolution expressing 
support for honoring a day towards DIPG to raise awareness and 
encourage research into cures for DIPG and other pediatric cancers.
  As a business major keenly aware of private sector dynamics and 
pharmaceutical manufacturing, Jace also helped establish partnerships 
with biopharmaceutical innovators and foundations. He regularly brought 
together foundations to partner with him on aspirations he had to fill 
gaps in research and patient navigation. Jace conceptualized a DIPG 
Patient Navigation System to direct patients to molecular diagnostics 
and clinical trials, attracted the support of 20 top doctors and 
several foundations to open this novel system in November. Because of 
Jace, over 300 tumors previously held in storage awaiting funding for 
genomic sequencing are now being sequenced added to quadruple those 
available for researchers. Jace inspired an astonishing $5 million in 
funding for pediatric brain cancer research and treatment, and it is 
because of him that over 200 patients received expanded access to an 
investigational drug.
  When asked about what he wanted to do with the remaining time he had 
left and whether he would devote it towards travel or other personal 
experiences, Jace responded, ``I can't die, I'm busy.'' Jace ignored 
the ticking clock tethered to him to become a thundering voice for 
future patients, always putting the need to advance science and protect 
younger kids and their legacies before his own.
  As a physician for nearly 30 years, I am no stranger to cancer or the 
miracle of hope when faced with the heartbreaking news of a diagnosis. 
Even during the toughest of times, I have witnessed God in my patient's 
grace and acceptance; Jace is no exception. I am profoundly honored to 
have had the opportunity to get to know him and his remarkable family. 
Jace is survived by his loving parents, Roger and Lisa, and his sister, 
Brooke.
  I ask my colleagues and all Kansans to join me in remembering Jace's 
courageous fight, his ability to rise to the challenge, and to make a 
lasting impact in the fight against pediatric cancer.

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