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"My life would be a lot different without pathologists and laboratory professionals, the whole course of my cancer treatment was dictated by all of my test results." -Erin Carter

 

 

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The Lab Saved My Life

Receiving a serious diagnosis can be life-changing. Patients and their caregivers can help take control of their treatment and care options by learning everything they can about their diagnosis, which includes laboratory and pathology results. Patient Champions not only advocate for themselves, they share what they’ve learned to empower others to do the same. This program focuses on teaching patients and caregivers about the laboratory so they can better understand their options and choose the treatments that work best for them. Empowered patients are essential to create optimal health care worldwide.

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Meet ASCP 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."

Cindy Shares Her Legacy



“What I would like people to remember is first of all, that I was a good person: that I tried to always do the right thing, that I treated people well, and that I always dedicated myself to working in the laboratory, doing the best I could, or volunteering, in order to make someone else’s life better.”

Cindy Tells Her Cancer Story



Watch Cindy talk about the role the laboratory played in her fight against cancer.

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."

James and His Family Share His Story With Ewing Sarcoma

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Noted piano prodigy, James was diagnosed with Ewing Sarcoma when he was 13 years old. After almost three months of intensive chemotherapy treatments, he was declared cancer-free. Today, James promotes the role laboratory professionals and pathologists play in cancer diagnosis and treatment.

What Is Ewing Sarcoma?

Ewing Sarcoma is a rare form of aggressive bone and tissue cancer. This cancer occurs in young adults and children and, if diagnosed early, has a survival rate between 59-70%. Once the cancer has metastasized, meaning that it has spread to different parts of the body, the survival rates drops. It is diagnosed through a biopsy, as seen below. 

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A pathology slide of Ewing Sarcoma which shows the dark, round cells typical of this tumor.

Contact James

Are you interested in highlighting the story of James through a media story or speaking engagement? Contact Lotte Mulder at Champions@ascp.org.

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.

Erin Shares Her Cancer Story

Erin Carter Headshot


What is Papillary Thyroid Carcinoma? 

Papillary Thyroid Carcinoma is a type of cancer of a large gland (the thyroid) in the neck. Not everyone has physical symptoms, but some people might notice a lump in their neck. It is diagnosed through blood tests and biopsies performed by laboratory professionals and pathologists. Metastatic papillary thyroid cancer means that the cancer has spread beyond the neck gland into other areas of the body such as the lymph nodes. Below is a slide of a biopsy used to make the diagnosis of papillary thyroid cancer. 

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A pathology slide of Papillary Thyroid Carcinoma showing dark blue, crowded cells creating tufts or fronds into clear spaces is typical of this tumor.

Contact Erin

Are you interested in highlighting the story of Erin through a media story, event or speaking engagement? Contact Lotte Mulder at Champions@ascp.org.

Kya's Story

Growing up on a farm in rural Minnesota, Kya embodied what it means to live an active lifestyle, playing year-round sports like tennis, hockey, and baseball, and working through farm chores and tossing hay bales.

But at the age of 16, a routine laboratory test showed the self-proclaimed social butterfly had abnormally low blood counts, putting her at a higher risk for bleeding—and putting a hold on her beloved activities.

“After I was diagnosed, I had to change my lifestyle from very active to very sedentary,” Kya says. “This wasn’t by choice, but as my body gradually got weaker, I couldn’t keep up with my preferred lifestyle.” Physical activities became arduous, she says, and simple things she once took for granted, like walking up a flight of stairs, became impossible. And as she moved to be closer to her specialist, keeping up her active social life also became more trying. “My world was flipped upside down,” she says.

Kya was diagnosed with Aplastic Anemia, a condition that is fatal without a bone marrow transplant. At first Kya was in denial, certain that Aplastic Anemia was not what she had. But when she came to terms with her diagnosis, and watched as her body slowly failed her, she ran the gamut of emotions, angry and sad, and eventually, acceptance. “It was like I went through a grieving process for the life I loved so much.”

Thankfully, one of Kya’s sisters was a perfect match, and Kya received a bone marrow transplant in 2010 at the age of 17. Before her diagnosis, Kya had a positive view of the laboratory—her mother is a laboratory professional and often shared her love of her job with her family, and Kya has fond memories of begging to go to work with her mom so she could peer into the microscopes. And after her diagnosis, Kya realized just how big of a role the laboratory played in patient care.

“A patient’s care plan cannot be devised until the team knows what is happening in that person’s body,” she says. “I was amazed and incredibly grateful to learn how intricate and precise these lab results are that made my care plan successful in saving my life.”

Thanks in part to her post-transplant monitoring, Kya recovered and enrolled in college in 2011. After laboratory tests showed that the first transplant was failing, she underwent a second transplant in 2013. Today, Kya is healthy and keeps her ever-positive outlook on life.

“Part of my Aplastic Anemia journey was having the opportunity to ask myself what I am truly passionate about and not just what seemed like a logical career path,” Kya says. “My passion? Television! I admire every part of it, and every person in every position that comes together to create a masterpiece.”  Working toward her passion, Kya is excited to start her career in the television industry, knowing that her Aplastic Anemia diagnosis is only one piece of her story.

“It was hard, I won’t pretend it wasn’t,” Kya says of her diagnosis and battle with Aplastic Anemia. “It was very hard getting healthy again and getting used to all of my ‘new normals’ that go with it. But I have learned so much about myself and how to take on challenges that I can’t imagine my life without this piece of my story.”

What My Journey Can Teach You

  • "Think of your diagnosis as a piece of your story, not a setback in your story. In the words of my beloved care team: This is a speed bump in your highway of life.
  • Keep track of your test results so you can see how your levels are changing or improving."
  • "Take care of yourself. It is okay to take a semester off of school if you need in order to heal and recover. I took time off during college after my second bone marrow transplant and it allowed me to come back even stronger. Now I am about to graduate in May!"
  • "The lab results and tests might seem intimidating but remember you can always ask questions. Why was this test done? What does this test mean? What does this change in results mean?"
  • "Caregivers are special people. They are guardians of and advocates for patients. As a caregiver, don’t be afraid to ask questions and explore every single option."

Kya Shares Her Aplastic Anemia and Bone Marrow Transplant Story

Kya Headshot

Kya was diagnosed with aplastic anemia at 16, a condition where bone marrow stops making enough new platelets and white and red blood cells. Kya received two bone marrow transplants and underwent intensive chemotherapy before each transplant to eliminate her own cells. Kya is sharing what she learned about the laboratory to empower other patients.

What is Aplastic Anemia?

Aplastic Anemia is a condition where bone marrow stops making enough new blood cells. This condition is chronic, but there are available treatments such as medications, blood transfusions, and bone marrow transplants. Aplastic Anemia is diagnosed through blood tests and bone marrow biopsy. Below is an image of Aplastic Anemia under a microscope. 

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A pathology slide of Aplastic Anemia which contains very few cells (dark blue spots). Normally, bone marrow is filled with many different cells.

Contact Kya 

Are you interested in highlighting the story of Kya through a media story, event or speaking engagement? Contact Lotte Mulder at Champions@ascp.org.

Deedee's Story

DeeDee's life has been about helping others. She is the Executive Director of Ironstone Farm, a non-profit organization in Lowell, MA, that provides one of the largest equine therapy programs in the United States for people with disabilities and illnesses. She was the primary caretaker for her mother when she was diagnosed with Chronic Lymphocytic Leukemia (CLL), and she assumed care for her friend and business partner Richard Donovan as he experienced cognitive and physical deterioration. She became the public member of the Board of Governors at the Board of Certification at the American Society for Clinical Pathology in 2007. As it turned out, all these experiences helped inform her response for these three life-altering diagnoses: renal cell carcinoma in 2007, a non-malignant meningioma brain tumor in 2009, and CLL in 2017.

Over the course of managing care for others and herself as well as volunteering for a laboratory medicine organization, DeeDee not only learned about the importance of laboratory results but the dedication of the people who provide them. While most people never come in contact with the laboratory professionals and pathologists that are responsible for their results, DeeDee is aware that these people work tirelessly behind closed doors to ensure accurate results and diagnoses that affect patient’s lives. During each of her diagnoses, she learned as much as possible about the disease, including asking questions about her laboratory results until she fully understood the answers. It’s her wish that the general public be educated in the role of the laboratory and its value in every aspect in healthcare. This education includes access to laboratory results as well as access to pathologists and tours of the laboratory.

Living with each of her diagnoses has given DeeDee clarity of purpose. Before, work consumed her life. While her work with Ironstone Farm is still an integral part of her life now, she recognizes the value of truly experiencing life.  She takes the time to eat right and get enough sleep. She spends time with people she loves, she’s learning to dance, and she’s recently traveled to Israel and Italy. Her life is fuller than it’s ever been before.

While DeeDee wasn’t unsurprised by her Chronic Lymphocytic Leukemia diagnosis—her mother and brother had also battled the disease, and she was experiencing symptoms—the conversation felt surreal. Throughout her and her family’s illnesses, she learned to ask questions about laboratory results. Now she’s paying those lessons forward. 

What I Learned From My Diagnosis

  • "Fight the battle as hard as possible."
    • Learn as much about the disease and its treatment options.
    • Ask for specific diagnostic tests.
    • Don’t leave the doctor’s office until you fully understand your lab results.
    • Reach out to other people with your diagnosis.
    • Ask for second and third opinions.
    • Don't be afraid to travel if it means getting the best care from the best people.
  • "Involve your family and friends."
    • Share your anxieties and feelings with them. You are not alone and their support will help you heal mentally and emotionally.
    • Understanding that your diagnosis hurts your loved ones, too. Use this as an opportunity to become closer, not as a wedge to drive you apart.
  • "Channel your heightened emotions into positive actions."
  • "Be grateful, not resentful. Take this opportunity to enhance everything positive in your life."
  • "If you can survive emotionally and mentally, then you have won."
  • "Care for your family members."
    • Humor is the most important gift you can give. 
    • Be their advocates in the healthcare system.
    • Talk with them about their test results, not around them.
    • Ensure that friends and family spend time with their loved one.
    • Take care of yourself. A healthy lifestyle benefits you both.

Deedee Shares Her Leukemia Story

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Deedee was expecting a diagnosis of chronic lymphocytic leukemia because her mother was diagnosed with this type of cancer and her brother has been diagnosed as well. Nevertheless, it was quite a shock to hear the diagnosis. Through taking care of her mother, Deedee learned to ask questions about lab results. She is now paying those lessons forward to other patients and caregivers.

What is Chronic Lymphocytic Leukemia?

Chronic Lymphocytic Leukemia, or CLL, is a form of blood and bone marrow cancer. It typically affects older adults and people may not have symptoms for years, which is why laboratory testing is essential. CLL is diagnosed by a routine blood test that is analyzed by laboratory professionals and confirmed by a pathologist. Below is an image of what CLL looks like under the microscope. 

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A pathology slide of Chronic Lymphocytic Leukemia which shows blue “soccer ball” cells, typical of this tumor.

Contact Deedee

Are you interested in highlighting the story of Deedee through a media story, event or speaking engagement? Contact Lotte Mulder at Champions@ascp.org.

Jasmine's Story

While she didn’t have a name for her condition, Jasmin endured symptoms her entire life. She spent a lot of time getting shuffled to different specialists who inevitably couldn’t give her answers. After several doctors and dozens of negative laboratory results, she began to wonder if her symptoms were “all in her head.” Thankfully, Jasmin majored in Clinical Laboratory Science at Winston-Salem State University. Once she learned about different aspects of laboratory testing, she suggested tests for her doctors to order. Working together, they made a diagnosis: Behçet’s disease, an inflammatory disorder that typically affects those living in the Middle East or Far East.

Jasmin received her diagnosis the day before her 25th birthday. While she felt relieved to finally have a name for all her symptoms—she wasn’t imagining things, after all!—she was also scared. She learned to live with Behçet's disease one day at a time, even if some days she embraces it and others she's angry at the world. Over time she’s discovered having a positive outlook, a solid support group, and advocating for others helps her achieve her dreams.

Currently, Jasmin is writing a book about her journey and launching a non-profit called Noire Health and Wellness dedicated to educating and helping others. She’d like everyone to know that individuals diagnosed with illnesses aren’t just patients—they’re people, first and foremost, and compassion goes a long way. She looks forward to educating the public about the medical laboratory team and their role in diagnostic medicine.

Lessons From Living With a Chronic Disease 

  • "The lab is a very important aspect in your heath care. Your lab results help determine your diagnosis and treatment options."
  • "A positive outlook and a strong, solid support group is everything. 
    Take it one day at a time. "
  • "You are NOT your diagnosis. It may feel like the end of the world, but I promise you it’s not. I’m a living testament to that."
  • "For caregivers: remember that patients are first and foremost people. 
    Every patient is different and may not fit the routine case."
  • "Think about what’s best for that patient and not necessarily what you believe is best."
  • "Compassion goes a long way, especially if you are delivering a diagnosis that is life changing or terminal."
  • "Also, remember most of us are not well versed in medical jargon. Talk to us like normal individuals. Those terms can sound extremely scary to the average person."

Jasmine Shares Her Battle With Behçet’s Disease

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Jasmin received her diagnosis of Behçet’s disease the day before her 25th birthday. Behçet’s disease is a rare inflammatory disease in blood vessels. Jasmin majored in Clinical Laboratory Science and is now working to educate other patients. Stay tuned for this developing story!

What is Behçet's Disease?

Behçet's is a rare inflammatory disease in the blood vessels. It is a chronic illness, but there is treatment to make people more comfortable. Behçet's can create ulcers, rashes, sensitivity to light and heat, and pain in the joints or eyes. It is diagnosed through blood work and tissue biopsies analyzed by the medical laboratory team.

Contact Jasmin

Are you interested in highlighting the story of Jasmin through a media story, event or speaking engagement? Contact Lotte Mulder at Champions@ascp.org.

Anthony's Story

Growing up in a family with ten kids meant that Anthony Loria didn’t get a whole lot of privacy. Even so, when he started experiencing diarrhea, fatigue, and intense abdominal pain when he was 12 years old, he hid his symptoms from his siblings, parents, and doctors. Through adolescence he learned to deal with the cyclic nature of the illness: months of symptoms followed by a few days or weeks without pain. The symptoms would always return, however. While his parents encouraged him to socialize, Anthony never wanted to be too far from a bathroom or his bedroom.

Eventually his life became nothing but school, studying, and hiding his symptoms. As neared graduation, he knew he’d have to tell his parents about what was happening to him if he hoped to make it in college. That’s when he learned he had Crohn’s disease. Before his diagnosis, he was just trying to survive; afterward, he started living life. After corticosteroid therapy and surgery effectively controlled his disease, Anthony went to George Mason University, where he became a scholarship athlete, enjoyed social activities, and decided to go to medical school.

When he was diagnosed, Anthony researched his condition, including the significance of laboratory test results. He realized essentially all the data that guides his therapy and allows him to live his life—such as biopsies, routine blood work, and blood transfusions—is a direct result of the work laboratory professionals and pathologists do. His appreciation for the laboratory grew even more—every pathologist he met cared deeply for patients and their care. He hopes to be a colorectal surgeon one day, and looks forward to working with pathologists (“the doctor’s doctor”). He would like patients to take the time to meet and talk with pathologists and laboratory professionals in the course of their care.

What Crohn's Has Taught Me

  • "For patients and caregivers, take time to meet and talk with some pathologists."
  • "Pathologists care deeply for patients and love to share their knowledge."
  • "Interacting with the medical laboratory team on a personal level has helped me get a better insight into their role as "the doctor's doctor."
  • "Be careful what you read on the internet. The majority of patients who are doing well don't go to forums or post online. They're busy out living life, which you should be doing as well."
  • "Your diagnosis is a small portion of your life, that at times demands significant attention. Remember you are a friend, student, colleague, etc. You are more than your diagnosis. Caregivers must speak up. You know the patient better than anyone on the care team. If something is not right, trust your gut and mention it. A good doctor will recognize and value your insights."

Anthony Shares His Story With Crohn's Disease

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Anthony started experiencing severe abdominal pain when he was 12 years old. Because he felt embarrassed, he did not confide in anyone until he was 18. Shortly thereafter he was diagnosed with Crohn’s disease, a chronic inflammatory bowel disease. Anthony now shares his story to increase awareness of this disease and to encourage others to speak up as well.

What is Crohn’s Disease?

Crohn’s Disease is an inflammatory bowel disease that causes abdominal pain, weight loss, diarrhea, anemia, constipation, and fatigue. It is a chronic condition, but symptoms can be managed through medications. Crohn’s is diagnosed through blood tests and biopsies. 

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A pathology slide of Crohn’s Disease shows disorganized and misshapen glands lining the intestine, typical of this disease. 

Contact Anthony

Are you interested in highlighting the story of Anthony through a media story, event or speaking engagement? Contact Lotte Mulder at Champions@ascp.org.

Laurel's and Claudette's Stories

Laurel

Married to a surgical pathologist and with a 25-year career as a nurse, Laurel is very familiar with the role laboratory professionals and pathologists play in healthcare. When she was diagnosed with hepatitis C in 1990, that familiarity became personal. Before her diagnosis, Laurel balanced her nursing career with raising two children, and playing the occasional round of golf. But after her diagnosis, she was terrified: would she live to see her children get married? Would she meet her grandchildren?

Laurel used her medical education to combat her anxiety. She learned everything she could about Hepatitis C so she’d be able to ask the right questions and became her own advocate. She had to consciously work to stay positive while living with the uncertainty a diagnosis of Hepatitis C brings.

Fortunately, some of that uncertainty has been replaced with relief and gratitude. Laurel received a liver transplant in 2011, and thanks to science and research, was cured of the virus in 2012. Now, with her future ahead of her, she’s found another passion in advocating for others and helping friends and family navigate the sometimes unwieldy world of medicine. She encourages everyone to ask about their lab results and pathology reports so they can understand what they mean.

Claudette

Claudette has worked as a nurse, midwife, and in human resources for an airline company. Living in Turks and Caicos, she is as dedicated to island life as she is to taking care of her family and friends.

One Sunday when she returned home from church, her son A.J., who was 18 at the time, was still in bed. That was unusual for him, but Claudette made him some food hoping to rouse him. A.J. did not eat anything and returned to bed. The next afternoon, she received a phone call at work; her daughter was unable to wake A.J., Claudette rushed home from her work at the hospital. Because they lived in a remote area, the ambulance would take too long to arrive, so Claudette lifted her son into her arms. To this day she still does not know how she got the strength, and got A.J. in her car to take him to the hospital. At the hospital they discovered that they did not have the resources to treat A.J., so they med-evacuated to Nassau, the Bahamas, with Claudette, his sister, and father, following behind him on a separate flight.

Claudette remembers the nurse’s words so clearly: “His eyes are fixed and dilated.” She knew it meant her son was gone. She made the decision then to donate A.J.’s organs. She knew it was the right decision. What she didn’t know was that Laurel Welch had been transported to Florida, waiting for a new liver she desperately needed.

Because of Claudette’s decision during the most devastating moment in her life, Laurel received a new liver and got a second chance at life. “All A.J. ever wanted to do, was live in the United States,” Claudette says, “and all his seven organs that were donated went to people in the U.S. so I guess his dream came true.”

How Laurel Learned to Take Control of Her Diagnosis

  • "Patients have to understand what their labs mean and how they affect their health. Too many people say that their doctor says everything is ok without understanding what that means for them."
  • "Patients need to take control and be an advocate for themselves and their family and friends. Understanding lab results is a big part of that."
  • "Learn as much as you can about the diagnosis, get a second opinion if warranted, and reach out to other patients with the same diagnosis."
  • "Learning about the diagnosis is the only way you can ask the right questions."
  • "Write a thank you note to the donor’s family, because stepping outside of yourself and saying thank you to the people who saved your life is incredibly important to help alleviate the feeling of guilt that so many donor recipients have. In my case, it provided Claudette with some relief and I was so happy I was able to give her that. The service is anonymous so we actually exchanged many letters without us even knowing each other’s name!"

What Claudette Said Helped Her Cope

  • "Hearing from Laurel through an anonymous hospital system was incredibly helpful. If you received an organ, please reach out to the family of the deceased, even just to say thank you."
  • "I think of A.J. as still living here, through other people right now, and I can still feel his presence. Thinking of A.J. this way has helped me tremendously."
  • "Support groups where you can talk about the loved one you lost makes you feel you are not alone."
  • "I wanted to hear other people’s stories and read books about other people who donated their loved one’s organs, I wish there were more available to support others going through something similar."

Laurel and Claudette Share How Meeting Each Other Helped Them Heal

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Laurel received a liver transplant that saved her life after she was diagnosed with Hepatitis C. She received her liver through Claudette, whose son A.J. was only eighteen years old when he died from a head injury. Learn what helped both of them recover physically and emotionally from this event and what role the laboratory played in Laurel’s survival and A.J.’s ability to donate.

What is Hepatitis C?

Hepatitis C is a viral infection that attacks the liver and it causes fibrosis (also known as liver scarring). These scars prevent the liver from functioning optimally. Liver cirrhosis is advanced liver scarring, which can lead to liver failure and the need for a liver transplant. Hepatitis C begins as a blood-borne infection which infects the liver and is diagnosed through a blood test and monitored with tissue biopsies. Below is the slide the pathologist uses to confirm the diagnosis and “stage” the disease to assist clinicians in choosing treatment.

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A pathology slide of Hepatitis C shows clumps of dark blue cells (inflammation) within the liver, typical of this disease.

Contact Laurel and Claudette

Are you interested in highlighting the story of Laurel and Claudette through a media story, event or speaking engagement? Contact Lotte Mulder at Champions@ascp.org.
About ASCP

What is Pathology?

Pathology is the study of disease using body tissue and cells. This study, performed by pathologists—medical doctors who specialize in pathology—can be performed by examining tissues with the naked eye, examining stained cells with a microscope, or analyzing the cellular or chemical composition of body fluids. Pathologists work with other members of the medical laboratory team (pathologists’ assistants, clinical laboratory scientists, and phlebotomists), as well as the clinical care team (physicians, nurses, radiology, and pharmacy) to provide diagnoses which determine treatment plans and care options.  

The Critical Role of Pathologists and Laboratory Professionals

Pathologists and the medical laboratory team are involved in patient care, and perform the following critical functions:

  • Sample preparation and collection.
  • Analysis of blood and body fluids.
  • Examination of tissues.
  • Interpretation and explanation of laboratory test results.
  • Teaching medical students, participating in tumor boards, and otherwise acting as the “doctor’s doctor”.

As our healthcare system moves toward personalized medicine, pathologists’ visibility as part of the multidisciplinary healthcare team is increasing. They are vital in advising clinicians and patients about treatment options based on a personalized approach to diagnosis. 

Follow the link if you want to learn more about pathologists and laboratory professionals.

Learn More

What is ASCP?

Founded in 1922 in Chicago, ASCP is a medical professional society with more than 100,000 member board-certified anatomic and clinical pathologists, pathology residents and fellows, laboratory professionals, and students. ASCP provides excellence in education, certification, and advocacy on behalf of patients, pathologists, and laboratory professionals.

Discover More About ASCP

Click below to learn more about ASCP, including our members, resources, and community efforts.

Learn More

Patient Champions Events

Featured Event

Learn How the Lab Can Save Your Life Event
Baltimore, MD
October 3, 2018, 5:30 - 7:00 p.m.
Event Details

An ASCP Patient Champions Education and Networking event at the ASCP Annual Meeting 2018.

Receiving a serious diagnosis can be life changing. Patients and their advocates can take better control of their treatment and care options by learning everything they can about their diagnosis, including understanding their laboratory and pathology results. Empowered patients are essential to creating optimal health care. The Learn How the Lab Can Save Your Life event focuses on empowering patients and patient advocates by educating these groups about the laboratory in order to discern their available treatment options and choose the plan that works best for them. The American Society for Clinical Pathology (ASCP) will host this inaugural event during their Annual Meeting 2018 in Baltimore, MD at the Baltimore Convention Center. The event will be during the opening reception, from 5:30-7:00 p.m. Patients and patient advocates are welcome to attend the entire first day of the conference free of charge.


Have questions? Contact Lotte Mulder.

Register Now

Program

5:45 p.m.- Opening Remarks by ASCP CEO E. Blair Holladay, PhD., MASCP, SCT(ASCP)CM

6:00 p.m. - Learning about Pathology Demonstration

6:20 p.m. - Terry Wilcox, Co-Founder and Executive Director, Patients Rising & Patients Rising Now

6:35 p.m. - Deedee O’Brien, Executive Director Challenge Unlimited and ASCP Patient Champion

7:00 p.m. - Closing Remarks by Patient Champions

Participate in This Event

There are many ways to participate with the ASCP Patient Champions program, and we invite you to get involved and start a conversation about the best fit for your organization’s needs and goals. Bring your staff, patient advocates, patients, caregivers, family and friends! We will provide free registration for people you want to bring to the Learn How the Lab Can Save Your Life event.

Participate by exhibiting for free at the ASCP Annual Meeting in our Patient Champions section. Please note there are limited booths and are only available on a first come, first serve basis.

Particpate by facilitating a lecture on patient advocacy and education.

Particpate by sponsoring the event or specific aspects of the event, such as food, lectures or booths. Limited sponsorships are available.

To get involved or to help spread awareness, please contact Lotte Mulder below or call 312-541-4757.

Contact Us

Events

The Lowell General Hospital/Circle Health Team Walk for Cancer June 10, 2018 Lowell, MA

Event Details

8th Annual Boston North Cancer Association Hope Begins Here Awards Gala
May 3, 2018
Danvers, MA
Event Details

Care Coordination Summit Sponsored by Patient Champions
April 18-20, 2018
San Antonio, TX
Event Details

Cindy Johns Patient Champions Memorial Fund Fundraiser, at the ASCP Leadership Forum
April 12, 2018
Miami, FL

Sponsored Global Focus on Cancer Fundraiser
October 5, 2017
Port Chester, NY
Event Details

20_18350_JB_Patient-Champions_Images-for-Website_8_cindy-award

Cindy Johns, Patient Champion received the ASCP Patient Champions Award from ASCP CEO E. Blair Holladay, PhD., MASCP, SCT(ASCP)CM

Get Involved

Become a Champion

Patients are at the core of health care; they are what every diagnosis and treatment revolves around. Though it can be tough to receive a diagnosis, patients and their caregivers can take control of their treatment by understanding their diagnosis and care options. Patient Champions have learned to advocate for themselves and are sharing what they have learned to empower other patients and caregivers.

If laboratory tests have helped you manage an illness or supported your recovery, we want to hear your story! Apply to become a Champion to inspire and empower other patients and caregivers. By sharing your journey, you can help others as they navigate the often challenging road of diagnosis, maintenance, and recovery.

Nominate a Champion

Have you or someone you know been diagnosed within the last five years with a condition that impacts their life? Is this person aware of the role the laboratory plays in their diagnosis, maintenance, and recovery? Would they like to share their story through various media channels to empower others and raise awareness of the medical laboratory team? If this sounds like you or someone you know, nominate them to be an ASCP Patient Champion today.

Be Our Next Champion

You could be our next Champion if you :

  • Have been recently diagnosed.
  • Have a basic understanding of the role the lab team played in your diagnosis and/or treatment.
  • Are excited to share your journey through interviews, blogging, social media, and speaking engagements.
  • Are able to participate in the program for at least two years.

Patient Champions Will Receive

  • An opportunity to support patients and caregivers by demystifying the diagnosis and treatment process.
  • Free media and presentation training to build their communication skills and help them talk about their treatment.
  • The experience of sharing their stories through interviews with journalists and bloggers, public speaking engagements, and more.

The Application Process

  • Fill out a Patient Champions Application form, providing descriptive information about your diagnosis. No disclosures or liability forms are necessary at this point.
  • We will send you an email confirming we have received your application.
  • ASCP staff and the ASCP Patient Champions Advisory Board will review your application, and we will contact you to let you know if you are selected as our next Champion!
  • If selected as a Patient Champion, you will have the opportunity to share your journey through interviews, speaking engagements, videos, and articles/blogs.

Patient Champions_Images for Website_Kya-with-Mom_resized
Champion Kya (right) with her Mom Connie (left), laboratory professional, who taught her how to read and understand lab results. 

Apply Now

The Nomination Process

  • Identify a friend, family member, or colleague with a compelling story and tell them you’d like to nominate them for ASCP’s Patient Champions program.
  • Complete a nomination form describing their situation and diagnosis. No personal information is required at this step, so disclosures or liability forms aren’t necessary.
  • ASCP staff and the Patient Champions Advisory Board will review your nomination. If the committee would like to learn more, you will be notified and the nominee will be asked to complete the application form.
  • If the nominee is selected to be a Patient Champion, all parties will be notified once the decision is made. ASCP membership IS NOT REQUIRED to nominate or be nominated as a Patient Champion.

You may nominate multiple individuals to be Patient Champions.

Nominate Now

Empower Patients and Caregivers

Empowered patients who understand their diagnosis and treatment plans feel more in control of their situation and are able to make educated decisions. Help us reach more patients and caregivers by promoting our Champions and their stories. You can follow us on Instagram and Facebook and like, share, and forward our posts and videos. You can also download our promotional materials (see below) and share them within your community. You can also email us to request a media kit, send us media contacts and partnership opportunities, or cohost a patient advocacy event with us.

Please contact Lotte Mulder prior to promoting the Champions to coordinate efforts with ASCP. You can email her at Champions@ascp.org or call her at 312-541-4757.

Patient Champions_Images for Website_Nam-Erin-Lotte_resized
Nam (ASCP), Champion Erin, and Lotte (ASCP) at Erin’s home.

Download Promotional Materials

Use our promotional materials and flyers to educate and empower patients and caregivers around the world!

Download Promotional Materials
Download Patient Champion Fliers

Our Partners 

ASCP could not have created the Patient Champions program without the hard work, support, and guidance from our partners, sponsors, and supporters.

Challenge Unlimited

ironstone logo

Ironstone Farm uses the dynamic power of horseback riding and the environment of a farm to combine several therapies into one highly effective experience. Top doctors and medical institutions refer clients to Ironstone because of the success of their therapeutic programs. The programs server 400-500 individuals each week, providing medically and recreationally based therapies, mental health support for people with cancer and for veterans suffering with PTSD, teen oriented programs for you people at risk, Touch Therapy for elders with memory impairment, and use of Ironstone Farm as a venue for adoption parties for children with disabilities who are in foster care. The farm is home to 32 horses and runs with the help of more than 200 volunteers.

Global Focus on Cancer

global focus on cancer logo

Global Focus on Cancer is a U.S. based 501(c)3 non--profit organization whose mission is to act as an agent of simple and effective change to help reduce the global burden of cancer through programs in support, awareness, advocacy, and networking, in areas where access to information about cancer is critically lacking. 

Become a Champions Partner

The Patient Champions program would not be possible without partner organizations. We invite new partners to join us and support our mission in a number of ways:

  • Co-promoting our programs.
  • Co-facilitating sessions at conferences.
  • Co-authoring articles about patient advocacy.
  • Co-exhibiting at conferences.
  • Co-sponsoring events.
  • Co-creating educational and advocacy events.
  • And more.

Contact Us

Each of our partnerships is a collaborative effort, and we are happy to discuss options and ideas that will be a benefit to all. If you’re interested in working with us to educate and empower patients by highlighting the work of the medical laboratory team, please contact Lotte Mulder at Champions@ascp.org or 312.541.4757.

The ASCP Patient Champions Program 

The Patient Champions program raises awareness of the vital role the medical laboratory plays in patient care by highlighting real-life stories of patients—our Patient Champions. By sharing their stories, Patient Champions empower others to ask the right questions to better understand their diagnoses, management choices, and potential treatment options.

ASCP Patient Champions Can Be Part of Your Event

ASCP Patient Champions receive media training so they can share their stories through a variety of mediums:

  • Interviews
  • Blog posts
  • Speaking engagements
  • Social media
  • Magazine articles
  • Advisory boards

If you would like to contact an ASCP Patient Champion for an interview or speaking engagement, please contact Lotte Mulder at Champions@ascp.org or call 312.541.4757.

Meet Our Patient Champions

Our Champions have been diagnosed with a variety of illnesses: breast cancer, thyroid cancer, leukemia, Ewing sarcoma, aplastic anemia, hepatitis C, Crohn’s disease, Behçet's disease, and more. They have received multiple treatments and surgeries, including liver, kidney, and bone marrow transplants; chemotherapies; and medications. Our Champions are passionate about sharing what they have learned on their journeys and about the laboratory with others.

You can learn more about each Champion by clicking below.

Meet Our Champions

Patient Champions_Images for Website_Nam-Erin-DeeDee-Cindy-Lotte_resized
Patient Champions Team Nam (far left) and Lotte (far right) with Champions Erin, Deedee, and Cindy at ASCP’s Presidents Dinner, Chicago, 2017. 

About the Patient Champions Program

Get Involved

Receiving a serious diagnosis can be life-changing. Patients and their caregivers can help take control of their treatment and care options by learning everything they can about their diagnosis, which includes laboratory and pathology results. Patient Champions not only advocate for themselves, they share what they’ve learned to empower others to do the same. There are multiple ways a patient can work with ASCP:

  • Become a Patient Champion and tell your story through various media outlets.
  • Promote the program by interacting with us on social media.
  • Speak at conferences about the Patient Champions program.
  • Join our Advisory Board.
  • Volunteer at Patient Champions events.
  • Co-author articles about the laboratory and patient advocacy.

To learn more about these and other opportunities, please contact Lotte Mulder by email at Champions@ascp.org or by phone at 312.541.4575.

What Patient Champions Will Receive

  • An opportunity to support patients and caregivers by demystifying the diagnosis and treatment process.
  • Free media and presentation training to build their communication skills and help them talk about their treatment.
  • The chance to share their stories through interviews with journalists and bloggers, public speaking engagements, and more.
  • Travel expenses related to their work for Patient Champions.

Erin In Hospital at 22 after 1st Thyroidectomy
Champion Erin at 22, right after her thyroidectomy.

Nominate or Become a Patient Champion

Have you or someone you know been diagnosed recently with a condition that impacts their life? Is this person aware of the role the laboratory plays in their diagnosis, maintenance, and recovery? Would they like to share their story through various media channels to empower others and raise awareness of the medical laboratory team? If this sounds like you or someone you know, nominate them to be an ASCP Patient Champion.

How the Nomination Process Works

  • Identify a patient with a compelling story and tell them you’d like to nominate them for ASCP’s Patient Champions program.
  • Complete a nomination form describing their situation and diagnosis. No personal information is required at this step, so disclosures or liability forms aren’t necessary.
  • ASCP staff and the Patient Champions Advisory Board will review your nomination. If the committee would like to learn more, you will be notified and the nominee will be asked to complete the Patient Champions application.
  • If the nominee is selected to be a Patient Champion, all parties will be notified once the decision is made. ASCP membership IS NOT REQUIRED to nominate or be nominated as a Patient Champion.

You can nominate multiple individuals to be Patient Champions.

Learn How to Nominate
Learn How to Apply

Get Involved

Caregivers—whether professionals, family members, or friends—provide invaluable support and guidance for people who find themselves diagnosed with a serious condition. Caregivers have learned how to advocate for and empower their charges, and can help others do the same. There are several ways caregivers can work with Patient Champions:

  • Tell your story through video or pictures.
  • Promote the program by interacting with us on social media.
  • Speak at conferences about the program.
  • Promote the program through distributing flyers.
  • Join our Advisory Board.
  • Volunteer at Patient Champions events.
  • Co-author articles about the laboratory and patient advocacy.

If you’d like to learn more about the Patient Champion program or if you have any ideas or suggestions for the program, please contact Lotte Mulder by email at Champions@ascp.org or phone at 312.541.4575.

Patient Champions Will Receive

  • An opportunity to support patients and caregivers by demystifying the diagnosis and treatment process.
  • Free media and presentation training to build their communication skills and help them talk about their treatment.
  • The chance to share their stories through interviews with journalists and bloggers, public speaking engagements, and more.
  • Travel expenses related to their work for Patient Champions.

Nominate a Patient Champion

Have you provided care for someone recently diagnosed with a condition that impacts their life? Is this person aware of the role the laboratory plays in their diagnosis, maintenance, and recovery? Would they like to share their story through various media channels to empower others and raise awareness of the medical laboratory team? If this sounds like someone you know, nominate them to be an ASCP Patient Champion.

How the Nomination Process Works

  • Identify a patient with a compelling story and tell them you’d like to nominate them for ASCP’s Patient Champions program.
  • Complete a nomination form describing their situation and diagnosis. No personal information is required at this step, so disclosures or liability forms aren’t necessary.
  • ASCP staff and the Patient Champions Advisory Board will review your nomination. If the committee would like to learn more, you will be notified and the nominee will be asked to complete the Patient Champions application.
  • If the nominee is selected to be a Patient Champion, all parties will be notified once the decision is made. ASCP membership IS NOT REQUIRED to nominate or be nominated as a Patient Champion.

You can nominate multiple individuals to be Patient Champions.

Learn How to Nominate

Get Involved

Pathologists and laboratory professionals can participate in the Patient Champions program through

  • Nominating a friend, family member, or colleague.
  • Applying to become a Patient Champion.
  • Promoting the program by engaging and interacting with us on social media.
  • Co-authoring articles about the laboratory and patient advocacy.
  • Joining our advisory board.
  • Participating in Patient Champion events.

To learn more about these and other opportunities, please contact Lotte Mulder by email at Champions@ascp.org or by phone at 312.541.4575.

Patient Champion DeeDee with Dr. Parul Bhargava

Champion Deedee discusses her diagnosis with Dr. Parul Bhargava at Beth Israel Deaconess Medical Center in Boston.

Patient Champions Will Receive

  • An opportunity to support patients and caregivers by demystifying the diagnosis and treatment process.
  • Free media and presentation training to build communication skills and help them talk about their treatment.
  • The chance to share their stories through interviews with journalists and bloggers, public speaking engagements, and more.
  • Travel expenses related to their work for Patient Champions.

Nominate or Become a Patient Champion

Have you or someone you know been diagnosed recently with a condition that impacts their life? Is this person aware of the role the laboratory plays in their diagnosis, maintenance, and recovery? Would they like to share their story through various media channels to empower others and raise awareness of the medical laboratory team? If this sounds like you or someone you know, nominate them to be an ASCP Patient Champion.

How the Nomination Process Works

  • Identify a patient with a compelling story and tell them you’d like to nominate them for ASCP’s Patient Champions program.
  • Complete the nomination form describing their situation and diagnosis. No personal information is required at this step, so disclosures or liability forms aren’t necessary.
  • ASCP staff and the Patient Champions Advisory Board will review your nomination. If the committee would like to learn more, you will be notified and the nominee will be asked to complete the Patient Champions application.
  • If the nominee is selected to be a Patient Champion, all parties will be notified once the decision is made. ASCP membership IS NOT REQUIRED to nominate or be nominated as a Patient Champion.

You can nominate multiple individuals to be a Patient Champion.

Learn How to Nominate
Learn How to Apply

Patient Champions Advisory Board

The Patient Champions Advisory Board is comprised of pathologists, laboratory professionals, and public members who collaborate with the ASCP Patient Champions team to shape the vision and strategy of the Patient Champions program.  Board members evaluate Patient Champions applications, determine potential partner organizations, identify events and conferences to help promote our Champions, and advocate for the program.

Meet the Advisory Board

Join Our Advisory Board

If you are interested in joining the Patient Champions Advisory Board, please contact us at Champions@ascp.org.

FAQs

Nomination and Application FAQs

Is there a nomination period for the ASCP Patient Champions program?

We accept nominations and applications year-round. However, ASCP works with a small marquee group of Patient Champions so that we can give them our best support and attention, so acceptance is on a first-come, first-served basis.

Must I be an ASCP member to nominate someone?

You do not have to be an ASCP member to nominate people.

Can I nominate multiple people?

You may nominate as many people as you wish. You can do so by completing the nomination form here.

Am I allowed to nominate myself?

We welcome you to nominate yourself; you can do so by completing the application here.

What are the criteria to become a Patient Champion?

Champions should have been recently diagnosed with an illness. They should have some understanding of the critical role the laboratory played or is playing in their diagnosis and treatment. Champions must be willing to receive media training before being interviewed on-camera. Candidates are asked to participate in the program for at least two years.

What personal information will I need to provide when completing the Patient Champions Nomination form?

You will only provide descriptive information about the patient’s diagnosis. No personally identifiable information is required at this step. ASCP staff and the ASCP Patient Champions Advisory Board will review your nomination and invite you to provide your nominee with a link to the application form.

Are there any disclosures and liability forms Champions need to sign?

No personally identifiable information is required in the initial phase of the nomination process, so no disclosures or liability forms are necessary. Once you have become a Champion, we will ask you to sign a release form to any information and materials you have provided.

What happens after I submit the nomination form?

ASCP staff and the ASCP Patient Champions Advisory Board will review your nomination and invite you to provide your nominee with a link to the application form.

What happens after submitting the application form?

Applicants will receive a confirmation email. ASCP staff and the ASCP Patient Champions Advisory Board will review the application. We will contact the applicant and let them know if they are selected as a Patient Champion.

How will the information submitted in the application be used?

This information will be shared with the ASCP Patient Champions Advisory Board. If we would like to use this information beyond this purpose, they will be asked to sign a consent form.

Participation FAQs

What are Patient Champions expected to do?

Patient Champions will share their journey through interviews, blogging, social media, and speaking engagements.

Will they receive compensation if selected?

The ASCP Patient Champions program is a volunteer opportunity for those with the desire to empower and support other patients. While Champions do not receive monetary compensation, they will be reimbursed for any travel expenses. They will also receive media training.

How long is the term of service for a Patient Champion?

While two years is the minimum requirement, someone may remain a Patient Champion indefinitely. A Champion may also ask to serve for a specific duration of time.

Can I participate in this program in conjunction with my nominee?

We are always interested in collaborating with multiple people. You can indicate your interest on the Nomination form here. You can also check our website for others ways to get involved.

The ASCP Patient Champions Program

This program raises awareness of the vital role the medical laboratory plays in patient care through real-life stories of patients. Patient Champions empower new patients to ask the right questions and understand their diagnoses by sharing their stories.
Become A Champion Help Promote Our Champions Learn From Our Champions Learn About the Cindy Johns Patient Champions Memorial Fund

Learn about our PATIENT CHAMPIONS’ STORIES

Cindy’s Story

Read Cindy’s Story >

James’ Story

Read James’ Story >

Erin’s Story

Read Erin’s Story >

Kya’s Story

Read Kya’s Story >

Deedee’s Story

Read Deedee’s Story >

Anthony's Story

Read Anthony's Story >

Jasmin's Story

Read Jasmin's Story >

Laurel's and Claudette's Story

Read Laurel's and Claudette's Story >
   20_18350_JB_Patient Champions_Images for Website_social icons_FB 20_18350_JB_Patient Champions_Images for Website_social icons_IN


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