Patient Champions

ASCP
Get Involved
Patient Champions

Cindy’s Legacy

Cindy was ASCP’s first Patient Champion, an ambassador to empower and educate patients and raise awareness of the crucial role the medical laboratory plays in patient care. Through her story, Cindy has empowered other patients to ask the right questions and understand their treatment options.

Cindy was also an inaugural member of the Patient Champions Advisory Board and served on that Board until her passing. Cindy was the first to receive the ASCP Patient Champion Award in September 2017, presented by ASCP Chief Executive Officer E. Blair Holladay, PhD, MASCP, SCT(ASCP)^CM, and ASCP Patient Champions. This award recognizes a Patient Champion who has gone above and beyond in his/her activities to increase awareness of the laboratory.

Cindy was passionate about service, volunteering, and her work as a laboratory professional. She was an active volunteer for ASCP and the laboratory profession throughout her career.

The Cindy Johns Patient Champions Memorial Fund

In her legacy, ASCP has created a memorial fund in her name, the Cindy Johns Patient Champions Memorial Fund, dedicated to promoting awareness and understanding of the laboratory to educate and empower patients and their caregivers.

The Cindy Johns Patient Champions Memorial Fund will support Patient Champions, like Cindy, through scholarships, advocacy, education, and materials that showcase the vital connection between patients and the medical laboratory.

Patient advocacy and engagement is essential to providing high-quality care. Cindy’s work as a Patient Champion, as well as a member on the Patient Champions Advisory Board, has made enormous contributions to bringing awareness of the laboratory to the general public. Her videos, blogs, and support have guided this program in the right direction to increase visibility of the vital role pathologists and laboratory professionals play in patient care. The ASCP Patient Champions Program would have not been possible without Cindy’s foresight and guidance.

Give to the Cindy Johns Patient Champions Memorial Fund to continue Cindy’s passion to empower patients through creating understanding about the laboratory’s role in patient care.

Donate Now

Cindy's Advice for Someone Diagnosed with Cancer

"Take control of your own situation. Do research to learn what questions to ask. Find people to help you. Do not let anyone tell you that this is the way it is and you just have to do it."

"Write down everything your doctor tells you, so even if you don’t assimilate it at the time, so you can review the information later to make sure you understand."

"Always get a copy of your lab results so you know if something has changed. One of the most important things to do is to ask questions. Write them down before you get to your doctor’s office to make sure you cover everything you want to know."

"Never feel like you’re taking up too much of your doctor’s time."

James’ Story

Prodigy isn’t a word to be thrown around lightly, but for Hudson High School student James, the moniker fits. He started playing piano when he was three years old, and before long he was winning local, national, and international piano competitions. James has played piano in venues all around the world, including Carnegie Hall and the Kennedy Center in New York City. The vision he had for his life included upward trajectories in his music and academic careers, but it didn’t include cancer. Of course, illnesses rarely take our wishes into account.

When he was 13 years old, James began experiencing extreme abdominal pain. His doctors identified a tumor outside his bladder, and biopsies were taken. Members of the lab team as well as pathologists across the United States collaborated on a final diagnosis: a rare form of aggressive bone and tissue cancer called Ewing Sarcoma. James struggled with several side effects of chemotherapy such as hair loss, pain, and muscle weakness. Before his diagnosis, he played baseball and basketball; during his treatment, he had to give them up. Perhaps worst of all, James lost the feeling in his fingers, and with it, his ability to play piano. After nearly three months of chemotherapy, he was declared cancer-free and the feeling in his fingers returned.

James and his family navigated their journey with faith and hope. They also learned the value of the laboratory team. In fact, James volunteers at pediatric cancer awareness events so he can promote the role laboratory professionals and pathologists play in cancer diagnosis and treatment. He also continues to study piano so he can positively impact others through his music.

What I Learned From My Diagnosis

"Stay positive by thinking in the long term and not the short term. There is always a chance you are going to get through it no matter what."

"There are caring individuals who are tirelessly working to assist you and other patients."

"Maintain faith and hope. Allow others to help you. Ask questions about your condition without hesitation. Look to learn."

"For caregivers, learn as much as you can and all the questions that your charge might not think of."

What James' Parents Learned From This Experience

"Educate yourself, ask questions and strive to understand every test and everything that is being said. Don’t be intimidated or embarrassed to ask questions or share your concerns with the medical team."

"Take care of yourself and your needs. Doing so will give you strength to focus on the task at hand and deal with emotional moments with clarity."

"Ask for help when you need it. You may think you’re being a burden, but in reality, your friends and family want to do what they can to help you. Giving people a chance to help you will strengthen your connection with them."

"Be honest about your feelings. My husband and I were able to maintain ourselves in a good mental state throughout our challenge because we had each other to spill all of our complaints and feelings to without any hesitation."

"Pay attention to your other children and their needs. When one child is sick, the other children’s lives are affected too. It’s easy to overlook their struggles."

"Share your child’s updates with family and friends. They’re worried about your family. Use social media to spread news, or designate a friend or family member to do so on your behalf."

"Finally, one size doesn’t fit all. As each child and family is different and unique from others, some suggestions and coping strategies won’t fit your life style, and that’s okay. The most important thing to do is maintain hope."

Erin's Story

Erin was first diagnosed with papillary thyroid carcinoma when she was a senior in college. A nodule found in a routine gynecologist’s appointment prompted her doctor to order an ultrasound and a fine needle biopsy. When cancer was diagnosed by a pathologist, Erin had surgery to remove her thyroid and two cancerous lymph nodes. Following her college graduation, she received radioactive iodine treatment and was given a clean bill of health.

When Erin was pregnant with her son eight years later, her hormone levels were monitored at a high-risk clinic. An ultrasound revealed three suspicious lymph nodes; subsequent on-site analysis by a pathologist revealed recurrent papillary thyroid carcinoma. While Erin had surgery to remove two cancerous lymph nodes, her carcinoma tested positive for a BRAF mutation, which means the cancer would be less responsive to the radioactive iodine treatment and more likely to recur in the future. Erin’s doctors continue to monitor her cancer growth every six months through a combination of blood tests and scans.

Erin’s husband, Cody, is a pathologist and has deepened her understanding of the nature of her cancer and the diagnostic role the pathologist and laboratory team play in care and treatment planning. She has a great appreciation for the many doctors and clinicians that work behind the scenes on her behalf.

Erin has worked in the commercial furniture and design industry since graduating college and now stays home with her son, Luke. She enjoys designing, crafting, watching movies and spending time with her husband and son.