2024 Patient Leadership Council

The Patient Leadership Council (PLC) is a select group of Health Union Health Leaders and Social Health Awards winners who give feedback on Health Union projects.

The PLC includes and represents diverse voices across our chronic and terminal health communities, and aims to ensure our company efforts remain community-centered, inclusive, useful, and accessible. Health leaders chosen to serve on the PLC are compensated for their time, effort, and invaluable opinions and work.

Once a year, applications are open for all contracted Health Union health leaders to apply for a 1-year term to join the Social Health Award winners in providing us with insights and opinions on many projects throughout their tenureship.

Meet the 2024 PLC members below:

Social Health Award winners

Gerry Langan: Advocacy Trailblazer

Gerry Langan was diagnosed in September of 2018 with severe congestive heart failure and severe idiopathic pulmonary arterial hypertension, and her life hasn't looked the same since. Her passion is to help patients and their families navigate the often overwhelming world of diagnosis. Because she has faced her own medical challenges, she understands the importance of feeling heard and supported. Her goal is to provide a safe and welcoming community for patients to share their stories and receive the support they need.

James Hollens: Rookie of the Year

James Hollens is from Croydon, South London. Shortly after graduating from university in 2016, James was diagnosed with rheumatoid arthritis and three years later his diagnosis of ankylosing spondylitis diagnosis was added into the mix. James has worked alongside the charity Versus Arthritis on a number of projects as well as appearing in documentaries on The Guardian newspaper's website. He regularly posts on his Instagram account @JamesHollens where he attempts to spread awareness and positivity to the AS & Chronic Illness community using his sense of humor. He also writes and moderates on AxialSpondyloarthritis.net.

Kristine Hoestermann (RARE): Creative Contributor

RARE was founded in 2019 when the CEO, Kristine Hoestermann, struggled to find purpose as a newly diagnosed rare disease patient. What started as a passion project turned into a movement. Not only is RARE. a brand, but it is also a huge community of rare disease/chronic illness patients and their allies. 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.

Parvathy Krishnan: Caregiving Champion

Parvathy Krishnan is Executive Director and Founder at the Krishnan Family Foundation, a 501(c)(3) healthcare advocacy organization. She began her efforts in advocacy and awareness after both her children were with multiple ultra and nano rare genetic conditions. Parvathy is an accomplished speaker and has spoken at various conferences, workshops and events engaging various stakeholders across the Rare Disease Landscape. Parvathy is passionate about empowering others through advocacy, patient-family engagement, and collaborating with various stakeholders to bridge the gap.

Tina Aswani Omprakash: Revolutionary Researcher

Tina Aswani Omprakash is a Crohn’s patient and health advocate for the chronically ill and disabled. Via her writing, social media advocacy, and public speaking engagements, she spearheads public health causes, including those proposing research for and creating awareness for inflammatory bowel disease (IBD: Crohn’s and ulcerative colitis), life-saving ostomy surgery, gastroparesis, fistulizing disease, clinical trials, and initiatives supporting health concerns for women and racial, ethnic, and sexual minorities. Tina’s overarching mission is to normalize the rhetoric around chronic illnesses and disabilities in order to help patients own their ailments to live fuller, happier lives.

Sharron Rouse: Community Cultivator

For 20 years, Sharron Rouse built her career in education—from classroom teaching, to counseling, to becoming a Title I coordinator. Now, she leverages her years of navigating the education community to help support individuals who are pursuing kidney transplantation. Sharron received a transplanted kidney in December 2013 from her sister, and uses her platform to offer insight into how her own experience has helped connect with the people she works with as they start or continue their own kidney care journey.

Cynthia Covert/The Disabled Diva: Social Media Master

With over twenty years of living with chronic illnesses such as fibromyalgia, psoriatic arthritis, psoriasis, endometriosis, and 2 botched surgeries, Cynthia - The Disabled Diva, shares her experiences and know-how with others through her social media platforms. The Disabled Diva educates the public about chronic illness misconceptions and empowers patients to find the tools they need to live the best they can.

Shoshana Lipson: Healthcare Collaborator

Shoshana Lipson is the president of Hope in Pain, Inc. and the founder and Executive Director of Migraine Meanderings (a DBA of Hope in Pain) and Hope for Migraine community. She is a patient advocate, speaker, and writer with a passion to encourage, support, educate and inspire people with migraine to find purpose and value in the midst of chronic illness, and not give up hope. She has been living with migraine disease for most of her life as well as other comorbid conditions. Shoshana has a BDiv from Aberdeen University, Scotland, with post-graduate work in psychology, counseling and non-profit management. After having to stop full-time work in 2014, she started exploring how to use her non-profit and public speaking experience to help with migraine advocacy.

David Lyons: Lifetime Achievement

David Lyons, founder of the MS Bodybuilding Challenge and co-founder of the MS Fitness Challenge (MSFC) with wife Kendra, has dedicated his life to helping people with MS understand and be educated on the importance of fitness in their lives. He is the recipient of the National MS Society Milestone Award and faith based author of David’s Goliath, a book on his journey to a bodybuilding stage with MS; a speaker/writer for the Fellowship of Christian Athletes; writer for Everyday Health, reaching more than 50 million visitors monthly; owner of the OPTIMALBODY fitness brand; and president/executive producer at Lyons Entertainment, one of Hollywood’s top production companies; amongst other endeavors.

Health Union Patient Leaders

Teresa Alabata (Eczema Phoenix)

Teresa Alabata began her Eczema Phoenix Youtube channel in the summer of 2017 with the hopes of being able to share her experiences healing her eczema without steroids. She desires to inspire eczema newbies and veterans to open their minds and consider more options outside of conventional Western Dermatology if they are not seeing results with it. Secretly, she had hoped that in sharing her knowledge that the incidence of eczema would lower (a naive dream she now realizes). But with the growing number of people creating social media accounts specifically for eczema and topical steroidal withdrawal (TSW), she continues to offer as much information as she is inspired to in an effort to at least contribute to the conversation of what eczema really is and how to heal it. Teresa also writes for AtopicDermatitis.net.

Yolanda Brunson-Sarrabo

Yolanda is Founder of Spitfir Productions specializing in Brand Strategy; she’s penned Another Face of Multiple Myeloma, a reflection on her journey with multiple myeloma. She’s hopeful for a cure to myeloma- but until then living life as an advocate for health. She has partnered with a fellow patient advocate, where they have formed “The Myeloma Team” podcast. Yolanda is also the Executive Director of Mae’s Breath Foundation 501c (3). Mae’s Breath Foundation is a lung cancer awareness organization that promotes and provides information to the community about the disease. Yolanda is the Founder and President of Chronic Fitness a fitness boutique service for clients with chronic conditions, who seek fitness direction. Yolanda also writes and moderates for Blood-Cancer.com. She’s currently in remission.

Jed Finley

Jed Finley was diagnosed with ankylosing spondylitis at the age of 12 during a time when children of that age were not prescribed medications and the amazing treatments we have today hadn't been invented yet. Because of this, he mostly forgot about his diagnosis and remained active until his early 20s when the disease became too much and he needed to stop the sports and activities he loved. Jed founded the Facebook-based support group “Living With Ankylosing Spondylitis” as a way to connect with, learn from, and provide support to his fellow “Spondys”. The group has over 40,000 members and continues to grow. Jed is also active in the AS and chronic illness communities on social media and writes and moderates for AxialSpondyloarthritis.net.

Daniel G. Garza

Daniel G. Garza has been a patient leader for more than 20 years. He speaks publicly about HIV, anal cancer, and mental health. Daniel shares his story on social media through several campaigns such as Positively Fearless, volunteers for organizations such as Radiant Health Centers, and works with NMAC as a language justice consultant and as a facilitator training new advocates. Through his company, Lilmesican Productions, Inc., Daniel and his partner, Christian, produce live stream content that is geared toward adding positive messages to the HIV, Cancer, and LGBTQ communities. Daniel is also a certified life coach with a focus on spirituality, as well as wan actor and stand-up comic on the health conference circuit. Daniel writes for H-I-V.net and is also a published author. His Grumpy Bunny and the Colors Game is a guided meditation book for children.

Barby Ingle

Barby Ingle is a best selling author, reality personality, and lives with reflex sympathetic dystrophy (RSD), migralepsy, endometriosis and other pain disorders. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics. Her blog, reality shows and media appearances are used as a platform to help her become an ePatient advocate, and she now travels the country attending healthcare conferences, speaking publicly, sharing her story, educating and advocating for patients across the globe. She has received 19 accommodations over the years for her advocacy work and in 2017, Barby was named a Health Information Technology Top 100 Influencer by HealthScene and Top 20 Health Influencer by Insider Monkey Magazine.

Andrea Jenson

Andrea Jensen’s life changed in 2000 when all three of her children were diagnosed with asthma and then hospitalized over the next few years. In the process of caring for her kids, she realized that she too had asthma! Originally trained as an Interior Designer, Andrea returned to school for another bachelor’s degree, this time in the field of public health. Andrea is now a Nationally Certified Health Education Specialist (CHES), a Certified Asthma Educator (AE-C), and coordinates an Asthma Home Visit Program. In addition, Andrea authors a blog, “My Life as an Asthma Mom.” For the last 5 years, her blog has been listed as one of the best asthma blogs by Healthline. It was recently included in the U.S. Library of Medicine – National Institute of Health’s Medical Library and Archives. She is a board member of Allergy & Asthma Today magazine and involved in many other asthma education agencies in her home state and writes for Asthma.net.

Shamekka Marty

Shamekka Marty advocates for those living with Lupus on various platforms, including her website, podcast, YouTube channel, Facebook, and IG under the name @Prettysicklupuschic. Lupus has been a part of her life for as long as she can remember. Even before she was diagnosed, she was advocating for Lupus in honor of her mother. Her mother gave up her voice and she wanted to make sure that no one else would go through the same thing. When Shamekka was diagnosed, she didn't think: "why me?" She thought: "try me!" She shows people every day that although you may deal with the horrible yet unpredictable Lupus, there is still plenty of life to live!

Amy Russell-Parliman

Amy Ellen Parliman lives life by faith and enjoys spreading kindness. She has a passion for serving her community through her career in healthcare as a radiology technologist. She enjoys performing diagnostic imaging on her patients, she prides herself in safe and quality care. On January 29, 2014, Amy became a cancer patient. She underwent treatment for stage III breast cancer during 2014. She lived with no evidence of disease (NED) until January 29, 2019, and then she was told she had metastatic breast cancer. She is currently on her first line treatment. Amy writes and moderates for AdvancedBreastCancer.net.

Julie Vallortigara

Julie Vallortigara was diagnosed with axial spondyloarthritis in 2014 and began learning what it means to live with a long-term condition. In 2015 she joined NASS, the National Charity for AxSpa in the UK, as a member, which made a significant impact on her life with AxSpa. Today, she shares her story to help others living with AxSpa. She is also a Health Coach, and helps people with long-term conditions find support, empowerment, and find their own ways to achieve their goals and live a happy life. Julia writes and moderates on AxialSpondyloarthritis.net.