May 2018 I was diagnosed with stage3b colorectal cancer after a routine colonoscopy. A 7cm tumor was found in my sigmoid region of my colon. I had surgery to remove the tumor and had a resection done of my colon. I had 40 lymph nodes removed during surgery. Three turned out to be cancerous. I did six months of chemotherapy. Then in February I was found to be NED or No Evidence of disease. Since then I have work to advocate for others in the cancer space especially with men. I have work with a fellow stage IV Colon cancer survivor Trevor Maxwell to create The Howling Place group it’s a part of manuptocancer.com. It’s an emotional support group for men only to help support their fight with cancer. I always say ‘ Cancer might be done with me but I’m not done with cancer. ‘ I live in Durham North Carolina with my wife and two adult children. I know I’m a very lucky man to have survived cancer.

Steve is 54 and was diagnosed with type 2 diabetes when he was 25. He has been using insulin since 2002. He is a gadget nerd and advocate for technology and social media/networking as aids to better blood sugar management. Steve worked with the American Diabetes Association for more than a decade handling logistics, lighting, sound, and staging for the various galas and outdoor events. Before the pandemic, he enjoyed riding his tandem bicycle with his wife for the Tour de Cure. Steve works in the exhibit and live event industry worldwide. When he is home in Beaverton, Oregon, he and his wife enjoy their senior dachshunds, good coffee and games.

Rob Weker is a 25+ year pharmaceutical R&D executive and a three time cancer survivor, including pancreatic cancer. Through his unique experience in industry, as a patient and a quality improvement expert, Rob is passionate on amplifying the patient and caregiver voice throughout the entire process – from research through clinic trials and the patient journey. He considers it his personal responsibility to represent future patients as he has benefitted from the efforts of previous patients and healthcare professionals. Rob participates on oncology patient advocacy councils with two pharmaceutical companies and a large health system. He has published many articles, writes a patient blog – Through The Patient Lens – and frequently speaks at healthcare conferences. Additionally, he is involved with improving health literacy for all patients. Ultimately, Rob delivers healthcare solutions that are accessible, affordable and innovative in delivering patient/caregiver focused value. Rob and his wife live in Philadelphia, PA with their cockapoo, Coco.

Merel Hennink, wife and mother of 2, was diagnosed with stage IV NSCLC in November 2014. She started targeted therapy for her ROS1 fusion and is still, with great results, on her 2nd TKI since 2016 . Until April 2020, she worked as a program manager and a teacher at the University of Applied Science Groningen. But as advocacy work became more structured she decided to put her time and energy in the service of her family and advocacy for 100%. Early 2015, she became active in the Patient Advisory Board of Longkanker Nederland (Dutch Patient Organization), to be a face and a voice of Lung cancer in the Netherlands. In 2018, she also became an ambassador of Lung cancer Europe (LuCE, an European umbrella Organization of Patient Organization) and also represents Longkanker Nederland in the Global Lung Cancer Coalition (GLCC). She had presentations on diverse platforms (ERS, ELCC, ESMO,WCLC etc.)and is active in diverse global patient councils. In 2020 she was a mentor in the IASLC STARS program. To get more educated about her own driver mutation, she became active in the Global Initiative of the ROS1ders in 2015. In her own country, she started the foundation Stitching Merels Wereld to raise (European) awareness about ROS1, and to get research done. As a result, the Hanze University of Applied Sciences started a research course ´Merels Wereld´ in 2017. And Stichting Merels Wereld, the Hanze University of Applied Science together with the University Hospital Groningen, initiated, created, fund and implement a ROS1 research program. Every year she give lectures to (medical) students about the engaged patient and the benefits to collaborate with them.

Alexandra Muskat was first diagnosed with Type 2 Diabetes at 19 years old. As an attorney and social media manager, she spent the last few years learning more about Diabetes and endeavoring to educate the community at large by sharing her story on social media.

Work Activities: Medically retired due to Rheumatoid Arthritis 2008 Westfield Washington Schools 1997 to 2008 Director of Business and Finance* Marion Community Schools 1993 – 1997 Director of Finance City of Kokomo IN 1982 – 1993 City Controller Development Director Planner  Responsibilities included: • Chief negotiator for complex labor negotiations, • Building construction oversight including over 600 million dollars of new construction • Public meeting presentations • Setting policy for the school system • Budget of 60 million dollars per year. Academic credentials BSPA Indiana University 1979 MSPA Indiana University 1989 Ed.D. Nova Southeastern University 2012 Diabetes activities • Contributor at TUDiabetes.org since 2013, including more than 200 blogs • T1 PWD since 1974. ( I was diagnosed at DisneyWorld 😊 ) • Author owner of www.RADiabetes.com • Member of FDA Patient Engagement Collaborative • Patient speaker at 2019 IDF summit in Korea about the history of diabetes technology Arthritis Activities • Local Arthritis Foundation board member • Member of Arthritis Foundation Patient Engagement Council One heck nice guy, most times

Damian Washington is actor from New York City and has appeared in over 30 commercials and voiceovers for brands like McDonalds, AT&T and Planet Fitness. His YouTube channel NoStressMS, about life with multiple sclerosis, has over 5,000 subscribers and won a 2020 WEGO Health Award for Best In Show. Viewers say the channel helps bring levity to the often grim topic of autoimmune disease.

In 2017 my life was saved by a stranger through the miracle of organ donation after my liver was destroyed by an incurable autoimmune disease called autoimmune hepatitis type 2.

This wasn’t the first time I had come close to the edge, though. Depression and mental illness have been part of my battle and journey to survive after being given my life-altering diagnosis at 17.

A doctor told me I had an incurable disease that had caused stage 4 cirrhosis (end-stage liver disease). I would be on medication (including steroids) for the rest of my life. I would never be able to have children. I would never be able to get life insurance. I was told not to drink, and by 30, I would need a liver transplant, or I would die.

This diagnosis devastated me. The life I had planned out was now obsolete due to the medication I would be on. The chances of me having a family and an everyday life were gone. So as I left the hospital that day, I decided I would try never to have regrets. ‘Carpe Diem – Seize The Day – Live every day as if might be your last, became the force that kept me going through the years that followed. 

The symptoms of the disease combined with the side effects of the medication led me to massive weight gain and the onset of anxiety and depression. As my liver was unsavable, I decided to embrace life and lived a rather hedonistic existence, not caring if I lived or died. I believed I was intrinsically worthless, broken and a failure.

I wasn’t worth saving, and so a transplant wouldn’t happen for me. I didn’t deserve one. 

But by 15 years later, at the age of 32, I had started to change my mind, and I didn’t want to die. I realised that I shouldn’t have been told what I was, the way it was. I should have had support. Things could have been different. I wanted things to be different. I made a vow. 

I will not stop until children grow up knowing about organ transplants, and organ donation is the norm, not out of a legal law, but out of choice.

“My life was saved by a young lady who died of brain stem death. I don’t know if she had chosen to be an organ donor or her family made that decision. But I have a rare blood type, and without their choice, I could quite easily be dead.

I can never thank her or them.

Instead, I will aim to help reduce the shortage of organs available by working to improve education.”

 My first children’s book, available on the Kindle is called, ‘Lucy’s Liver Transplant – A Story About Organ Donation’ and is now in 8 languages. 

Manish is a 28-year-old PhD researcher and lives in India. He suffered from FSGS/Alport Syndrome, that led to progressive chronic kidney failure. Thankfully, Manish had a kidney transplant in December 2020 after his father donated his kidney to him. The suffering finally culminated into a blessing! He is enthusiastic about creating awareness and support as well as educating rare disease, kidney disease and transplant communities. He is an avid health blogger and has recently started Doting Beans, an online awareness and support blog/platform for kidney disease patients and transplant recipients. Manish also supports initiatives such as organ donation and mental health awareness. He is associated with the Organization for Rare Diseases (ORD) India as a rare disease advocate and Zifcare, India as a mental health ambassador. In addition, he is a patient ambassador at Alport Syndrome Foundation, USA and research network volunteer with Kidney Research UK. Through his journey, Manish has realized the importance of accurate & timely diagnosis and need to develop effective methods for treating rare and chronic kidney diseases. He envisions to implement this through his prospective plans of a research career in the field of Bioengineering.

After a lifelong struggle against a rare, metabolic disease, Alisha received a liver transplant in 2020. Immediately she saw needs in the system and desired to give back to the community that gave so much to her. 

Thanks to the generous gift of life from not one but two donors, Alisha has begun what she calls the beautiful second life. She is the creator of the radical transplant movement, empowering patients to live out their radical truths as they live with illness. She is a certified 200hr yoga instructor, a trauma and grief doula, writer, speaker and embodiment coach living near the Rocky Mountains in Alberta, Canada with her family.