Jackie Newman is no stranger to learning about genetic health conditions. She understands complex medical situations well, having lived with kidney disease since age 3 and having two sons (ages 7 and 9) who were both diagnosed with Alport Syndrome – a rare genetic kidney condition.
“When we found out, that was a hard pill to swallow,” Jackie said. “They are on daily medicine for the condition, and they might have problems with their hearing and vision or even need kidney transplants when they are older. It’s like taking a punch to the gut.”
Back in November 2025, Jackie signed up for no-cost genetic screening through GenoWell, a community health research program, and encouraged her mother to do the same. Jackie decided to move forward with the process because of her own family’s history, including her sons’ rare genetic disease.
“I chose to do the screening because I needed to know for my kids,” Jackie said. “These are my children and I take care of them. It’s not just about me.”
A deeper understanding of her own genetics
Jackie signed up for GenoWell screening in mid-November and went to a Rochester Regional Health lab to have her bloodwork done.
About two weeks later, Jackie’s genetic screening results came back with a positive result for a harmful genetic mutation associated with Lynch Syndrome – the most common cause of inherited colorectal cancer, and other cancers including endometrial cancers.
“My mother tested negative and my sister tested negative [for Lynch Syndrome], so my father – who is deceased – may have passed it down to me,” Jackie said.
Taking action with her health
Within two weeks of receiving her results, Jackie met with a genetic counselor to discuss the results, what it meant for her personally, and what it meant for her children.
“I spoke with a nurse and counselor about what I could do moving forward, which included having exams more frequently, getting a colonoscopy at a younger age, and getting referrals to other specialists,” Jackie said.
After her conversations with Rochester Regional Health genetic counselors, Jackie was advised to meet with specialists in dermatology, OBGYN, and gastroenterology to take appropriate next steps for cancer screenings.
Jackie encourages others to sign up for the GenoWell screening program – not only for their own knowledge, but for their families.
“Do it for yourself, but also do it for your children,” Jackie said. “If there is something that the screening might find, it could help prevent issues for your children down the road. You can get the proper precautions taken if you can catch anything early on.”
Related Articles
