Advocacy Trailblazer: Gerry Langan
In 2018, Gerry went to the emergency room because she was having difficulty breathing, was so tired she could barely stay awake, had no appetite, could barely stand because her legs were so swollen… and she was scared. She was diagnosed with idiopathic pulmonary arterial hypertension (IPAH) and was told that the severity of her IPAH was not just moderate – doctors found that she was severely sick and needed immediate treatment or she would die. From that moment on, Gerry’s life changed forever.
Since her diagnosis, Gerry has felt the draw to share her story so others can find hope and inspiration. Pulmonary hypertension and people with chronic illness fight battles daily, some in complete silence. Gerry wants to make sure that everyone’s story is heard.
Best Team: PodcastDX
As we all know, the benefits of being a patient advocate are immense. PodcastDX, a weekly interview based podcast co-hosted by Lita Tomas, Jean Marie McNamara and Ron Rispoli, aims to amplify these benefits by providing a platform where people with different diagnoses can find support, guidance, and inspiration. They feature interviews with patient advocates, healthcare professionals, and people who have overcome their own health challenges, creating a community that uplifts, educates, and empowers. In their 6th year, they have produced more than 275 shows and have an ever-growing listener base in dozens of countries! While health professionals remain the central source of information for most Americans, PodcastDX is working to continue to grow and provide opportunities for “peer-to-peer healthcare” as a significant supplement.
Caregiving Champion: Parvathy Krishnan
Parvathy’s journey with patient advocacy began after both of her children were born with Lynch Syndrome, and therefore, constitutional mismatch repair deficiency (CMMRD), a rare disease that has had devastating effects on their family. As part of this journey, Parvathy has mastered navigating care at various specialty medical centers while advocating for complex pediatric palliative and hospice care to meet the needs of her children. Parvathy is committed to helping others and giving back by participating on local, national, and international boards and industry and community groups while serving on several working groups specializing in DEI-focused patient advocacy and ultra/nano rare diseases.
The Krishnan Family Foundation was established to help other families facing similar struggles: “Parenting a child with a rare disease is like planning a mission to outer space with zero funding or support. We as a family have made it our life’s goal to gather whatever resources we can to help every family on this mission.”
Community Cultivator: Sharron Rouse
Passionate, unique, loyal, and resilient, Sharron has dedicated her life to influencing the world as a kidney disease, dialysis, and transplant survivor. Sharron actively shares her story to bring hope and healing to anyone facing difficult circumstances in life. To expand the scope of her reach, Sharron founded Kindness for Kidneys International, a nonprofit organization committed to educating, encouraging, and empowering kidney warriors and their families. Kindness for Kidneys has gained national attention for monthly support groups, kidney education programs, and annual holiday drives. Sharron has been a guest speaker for several national and international educational and business-related conferences, and she also serves on the board of several Advisory Councils and panel discussions. Sharron’s hard work and devotion to serving the community have granted her numerous awards, including the Presidential Volunteer Service Award in 2020 and 2022 and Who’s Who In American Education.
Creative Contributor: RARE.
Kristine and Theresa (RARE.) each faced challenging health journeys. Kristine suffers from the rare condition Ehlers-Danlos syndrome (EDS), and Theresa’s son Owen was born with the rare disease Beckwith-Wiedemann syndrome. Feeling confused and alone, they each turned to outlets that would help them process their emotions and connect with others. In August 2019, Kristine and Theresa connected through Instagram and, over the course of a few months, realized that they were better together and decided to join forces. The mission of RARE. is to make the invisible visible. Each product is designed to create conversations and awareness surrounding rare diseases, chronic illnesses, and the people who battle them every day. In addition, 15 percent of purchases made at RARE. is donated to a nonprofit of your choosing.
Healthcare Collaborator: Shoshana Lipson
As the Executive Director of Migraine Meanderings and the President of Hope in Pain, Inc., Shoshana is passionate about making a difference in the lives of people struggling with the physical and emotional effects of migraine and other chronic pain conditions. Shoshana has lived with migraine disease and other conditions since early childhood. After stopping full-time work in 2014, she started exploring how to use her nonprofit and public speaking experience to help with migraine advocacy and patient centricity. One of her greatest joys is exploring ways to impact the lives of people with migraine and other chronic pain conditions, including creatively helping bridge the gap between patients, pharma, and healthcare providers through events, polls, surveys, collaborations, and providing current, evidence-based resources.
Lifetime Achievement: David Lyons
David Lyons, co-founder of the MS Fitness Challenge, and his wife Kendra have dedicated their life to helping people with multiple sclerosis (MS) understand and be educated on the importance of fitness. He fiercely advocates for the benefits of exercise, nutrition, and mindset in winning the battle against MS. David has received many accolades over the years, including winning the National MS Society Milestone Award. He is also the faith-based author of David’s Goliath, a book on his journey to a bodybuilding stage with MS. In addition, David is a writer for Everyday Health and the owner of the OPTIMALBODY fitness brand.
In 2013 David received the Health Advocate of the Year Award with Lou Ferrigno. And in 2015, at almost 57 years old, he was the only person with MS to receive the Health Advocate Lifetime Achievement Award from Arnold Schwarzenegger, among many other impressive recognitions.
David is considered the face of MS and fitness worldwide, and his fitness book Everyday Health and Fitness With Multiple Sclerosis was a No. 1 new release on Amazon. Plus, his MS Fitness Training Specialist certification partnered with the National Federation of Professional Trainers (NFPT) to educate trainers around the world on how to work with people with MS.
Revolutionary Researcher: Tina Aswani Omprakash
Tina Aswani-Omprakash is a multi-award-winning Crohn’s disease and ostomy advocate. She maintains a blog and advocacy platform called Own Your Crohn’s and co-founded the South Asian IBD Alliance to form a patient/clinician-led nonprofit organization to minimize stigma and disparities while improving education and awareness in the growing South Asian IBD population. She also runs a Facebook support group called IBDesis (South Asian IBD) Community. Tina graduated with a master’s degree in public health from Mount Sinai’s Icahn School of Medicine in June 2023. She aims to help design more patient-friendly clinical research and to ensure the recognition of disparities and unmet needs in communities of color.
Rookie of the Year: James Hollens
James was diagnosed with rheumatoid arthritis in 2016. Three years later, he also received an ankylosing spondylitis (AS) diagnosis. His first AS flare-up led to him losing his job, and he had to return to the UK. It was a long 8-month road to recovery before he could finally walk again.
During the COVID-19 pandemic, James was forced to shield and self-isolate since his immunosuppressive medicines make him highly vulnerable to the virus. James decided to take this time to find ways to support other people in similar situations and raise awareness of young people living with chronic and arthritic conditions.
James has worked alongside the charity Versus Arthritis on a number of projects; has appeared in documentaries for the BBC, The Guardian, and National Voices; and is a contributor for AxialSpondyloarthritis.net.
Social Media Master: Cynthia Covert
More than 20 years ago, Cynthia was diagnosed with fibromyalgia, psoriatic arthritis, psoriasis, and endometriosis within a 3-year time span. Along with pain and symptoms she had never heard of before, new and severe allergies to food and medication added a new level of difficulty to her already complicated life. Cynthia says, “Before becoming disabled, I ignorantly believed the world was accessible. I was wrong!” She is now fiercely aware that accessibility comes in many forms.
Through her blog; Instagram, Facebook, Twitter, and Pinterest accounts; YouTube channel, and freelance writing, Cynthia encourages others to accept and use the accessibility tools needed to make their lives less painful and help them function well despite their chronic conditions.
Congratulations to all of the 2023 winners!
Thank You to Our Industry Judges
Last but not least, thank you to our amazing healthcare industry judges for sharing your time and expertise to evaluate the inspiring contributions of our patient leaders and role models. Your support and dedication in recognizing and embracing patient centricity and the voice of the patient has a meaningful impact on millions of people living with chronic and complex conditions. From the entire team at Health Union, we appreciate you and thank you for your commitment!
The winners will be honored in person at the Fierce Pharma Marketing Awards during Digital Pharma East in September 2023.