The Verywell Health Impact Awards

Celebrating the Most Influential Health Advocates of 2023

Fact checked by Nick Blackmer

We are excited to launch the inaugural Verywell Health Impact Awards, which celebrates people who use their experiences living with diseases and conditions to advocate for others.

Each of our 10 award recipients knows what it’s like firsthand to experience the path to diagnosis, navigate treatment options, and pivot life plans because of their health. Their journeys motivated them to rally for others and help make improvements in health care. Their impact is inspiring.

Here are this year's recipients.

Tina Aswani-Omprakash

Crohn’s Disease Patient Advocate and Thought Leader, Executive Director and Co-Founder of the South Asian IBD Alliance (SAIA), and Creator of the Own Your Crohn's Blog

Tina Aswani-Omprakash was diagnosed in 2006 with Crohn’s disease, the same chronic condition that ultimately led to her father’s death. Her diagnosis led her to a new career path as a health advocate and a new community through the South Asian IBD Alliance (SAIA) and her blog, Own Your Crohn’s.

Sharing her experience with an illness that involves intimate bathroom-habit details “felt like social suicide,” Aswani-Omprakash said. “I lost a circle of friends, but I gained an even bigger community.” Aswani-Omprakash’s health advocacy work seeks to help eliminate the cultural stigma associated with Crohn’s and inflammatory bowel disease (IBD).

“The tide is starting to change, and more people are talking about IBD,” Aswani-Omprakash said. She also works to shed light on the mental health impact of those conditions. “These illnesses can take a toll on your self-worth and self-respect. Don’t be ashamed.”

Aswani-Omprakash emphasized the importance of finding a trustworthy healthcare team to get the mind/body care you need. She hopes her work will help educate people to become equal partners in their care. “Choosing a doctor is like dating,” she said. “Go with someone who has your back and will educate you on your condition.”

The Breasties

Leadership Team: Allie Brumel, Trish Michelle, Bri Majsiak, and Paige More

Five years ago, four strangers were on different breast cancer journeys, struggling to find support.

• Allie Brumel was diagnosed with triple-negative breast cancer at 28.

• Paige More opted to have a double mastectomy after learning she carries the BRCA1 gene.

• Trish Michelle was diagnosed with invasive ductal carcinoma.

• Bri Majsiak had a prophylactic mastectomy after losing her mom to stage 4 breast cancer.

“We were disappointed by the existing support spaces,” Brumel said. “They weren’t welcoming and often divided us based on our diagnoses, ages, stages, and backgrounds. Social media brought us all together despite the differences in our experiences.”

In 2018, the women created The Breasties, a uniquely all-inclusive nonprofit organization that creates a community for those impacted by breast and gynecologic cancers. “We wish we had this space when diagnosed—a space that welcomes survivors, previvors, stage 4 thrivers, and caregivers,” said Michelle.

The Breasties launched virtual meetups in their app; each is a protected space for people who identify as LGBTQ+, BIPOC, newly diagnosed, in active treatment, and more. “We’re on a mission to support and improve the experiences of the cancer community through peer-to-peer connection, resources, advocacy, and funding of stage 4 breast cancer research,” said More. The organization has supported more than 30,000 individuals through free virtual and in-person events and reached about 100,000 people through its advocacy initiatives.

Their advice for new members: “You are not alone,” said Majsiak. “It’s common to feel isolated when receiving a diagnosis or learning you are at high risk of cancer. This community is here for you.”

Jodi Ettenberg

Author, Travel Blogger, Legal Nomads Founder, and Vice-President of the Board of Directors of the Spinal CSF Leak Foundation

Jodi Ettenberg—author of The Food Traveler’s Handbook—quit her job as a corporate lawyer 15 years ago to take a one-year work sabbatical, which eventually turned into a new career as a travel blogger. Already diagnosed with celiac disease, she quickly realized how difficult it would be to manage her condition and strictly gluten-free diet while abroad.

Ettenberg wrote about her experiences as one of the first travel bloggers with celiac on her website, Legal Nomads. She also created gluten-free translation cards and celiac-friendly travel guides for her readers to use as resources. Language barriers and new types of food did not stand in the way of Ettenberg exploring the world. Her thirst for knowledge spurred her blog and travel guides, which aim to help others living with celiac disease feel more comfortable while traveling.

Ettenberg’s life on the road was derailed after she had to undergo a diagnostic lumbar puncture (spinal tap) six years ago. The procedure led to a chronic cerebrospinal fluid (CSF) leak, which left Ettenberg barely able to walk, nauseous, and struggling to speak. “I had to relearn how to exist in the world when everything I had identified with was taken away,” she said.

Ettenberg was later diagnosed with Ehlers-Danlos syndrome (EDS) and mast cell activation syndrome (MCAS). Instead of writing about travel, she turned her skills and experience to making videos and resources on her conditions to help those facing the same challenges. “My natural curiosity about the world has evolved into a curiosity about my conditions,” she said. Though she is now mostly bedbound, Ettenberg has become involved in supporting research on the causes, testing, and treatments of CSF leaks through her work for the Spinal CSF Leak Foundation.

Ettenberg’s advice: “You have a choice in how you want to approach each day. Putting energy toward what you’re curious about helps deal with the grief.”

Steve Gleason

Former NFL Player and Founder of Team Gleason

In 2011, former New Orleans Saints safety Steve Gleason revealed that he has amyotrophic lateral sclerosis (ALS), also called Lou Gehrig's disease. As the disease progressed, Gleason became unable to walk or talk, and he now can only use his eyes to communicate. Instead of letting his inabilities hold him back, Gleason got active, founding Team Gleason with the mission of helping fellow ALS patients live and thrive post-diagnosis.

Gleason and his organization offer innovative solutions aimed at empowering individuals with ALS to preserve their independence and identity. Team Gleason's services encompass a wide range of needs, including communication, mobility, and connecting individuals with skilled clinicians. “I am most passionate about human communication,” Gleason told Blair Casey, executive director of Team Gleason, via his eyes, which was then emailed to Verywell Health. “I’m only able to communicate at about 5% the capacity of an ordinary human. We’re working to solve this with our technology partners and brain-machine interface firms.”

Casey said, “As Steve’s first caregiver, I have knowledge and a very intimate understanding of ALS’s struggles, pain, and harsh reality. Team Gleason ensures that families know they have resources at their disposal.”

Gleason’s work gives him purpose. “My physical health is quite fragile, but in light of this, I have not been in the hospital for quite a few years. Please knock on wood for me. I feel a profound sense of purpose, meaning, and responsibility in my life. I feel like life is bringing me exactly what I was made for each day and each moment.”

Archie Green

Hip-Hop Artist and Founder/CEO of Peel Dem Layers Back

After dealing with personal struggles, including alcohol abuse and untreated depression, hip-hop artist Archie Green sat inside a jail cell in November 2013 and knew something had to change.

“While waiting in that holding cell, a voice came to me and said, ‘Stop crying,’” Green, founder and CEO of Peel Dem Layers Back (PDLB), said. “The second thing it told me was they can trap your body, but they can never trap your mind.”

After he got out, he used his experience with depression as inspiration for his single “Layers,” which details his journey through counseling and managing depression. The song resonated with people after it was released in 2016, receiving more than ​​25,000 plays.

Green saw the positive response to his single and wanted to do more, so he founded PDLB, a Cleveland-based nonprofit that provides mental health-based support for Black men and boys. PDLB uses hip-hop as the basis for their communication and community. The nonprofit has launched music-centered programs geared towards teaching Black men how to communicate and manage their mental health struggles.

Green’s advice for those battling depression or anxiety: “When you’re going through depression, you may feel like you’re the only person in the world who can understand what you’re going through. I’m here to tell you that such a perspective is not true. There are millions of others going through the same thing. It’s okay to ask for help; it’s the most important thing you can do.”

Nick Jonas

Singer-Songwriter and Co-Founder of Beyond Type 1

Nick Jonas was 13 years old when he was diagnosed with type 1 diabetes while on tour with The Jonas Brothers band. His first symptoms included mood changes, extreme thirst, frequent urination, and rapid weight loss (25 lbs in two weeks).

What began as a frightening diagnosis became an opportunity to share his experience. In 2015, Jonas, along with Juliet de Baubigny, Sarah Lucas, and Sam Talbot co-founded Beyond Type 1, a nonprofit organization dedicated to helping people live better with diabetes. “Being in the public eye, I felt a responsibility to normalize it, both for myself and those who followed me,” Jonas told Verywell Health via email.

Jonas' nonprofit offers an encouraging community, scholarship opportunities, educational resources, and a platform to help find financial support for insulin—among many other programs. "I think it's most important to create access and opportunities for people to better manage their life with diabetes and to take some of the burden out of the equation," he said.

Over the years, Jonas has learned to prioritize his health and lean on his support system. “The daily management can still be a bit overwhelming at times, but that’s all been a part of the ride,” he said. “With the support of my family and friends, I’ve been able to navigate these challenges to the best of my ability.”

Padma Lakshmi

Writer, Television Host, EndoFound Founder

Padma Lakshmi unknowingly suffered from endometriosis for decades before being diagnosed at 36 years old.

“I had extremely bad menstrual cramps, backaches, headaches, and, at times, shooting pain down one leg,” Lakshmi, the creator, host, and executive producer of the critically acclaimed Hulu series Taste the Nation, told Verywell Health via email. Lakshmi is also a New York Times best-selling author.

Lakshmi’s health improved after her diagnosis, thanks to multiple laparoscopic surgeries.

“I saw how much better life was without the shackle of pain that choked normal life,” she said.

Her experience inspired her to cofound the Endometriosis Foundation of America (EndoFound) in 2009 with endometriosis specialist Tamer Seckin, MD.

“I wanted to help other women and girls gain their freedom from pain, too, so they could flourish in their lives,” Lakshmi said.

Lakshmi and EndoFound are championing better education for healthcare providers through their fellowship program and with their interdisciplinary Gynepathology research facility, the first of its kind..

“I hope to change how this disease is taught in medical schools so that physicians will be sensitized to look for symptoms in their patients,” Lakshmi said.

Lakshmi’s wish for anyone experiencing symptoms of endometriosis: “Trust your instincts and keep looking for specialists that will listen to you.”

Tara Robinson

Army Veteran, School Counselor, CEO/Founder of the Black Heart Association

Army veteran Tara Robinson suffered three heart attacks over one week in 2014. The last one almost claimed the Dallas-based school counselor’s life.

Robinson’s health improved after she received a coronary stent. As she recovered, she realized stress was the biggest contributing factor to her heart attacks. “Stress is so damaging to our heart health,” she said. “It impacts what we eat. Stress will take you out. And there’s not enough noise around it.”

On top of that, Robinson recounted her interactions with her healthcare providers leading up to her heart attacks. Her symptoms were indicative of a heart attack–left arm numbness/pain, extreme fatigue, chest pain—but her healthcare providers insisted she was too young to have a heart attack since she was only 40. However, Black women can develop cardiovascular disease earlier than White women, which increases their risk of heart attack.

Robinson felt like doctors saw her as a set of symptoms, not as a person, and that her care lacked empathy and thoughtfulness.  “We’ve taken love out of the equation,” she said. “It’s harming us.”

Her experience inspired her to co-found The Black Heart Association to address bias, racism, and problematic policies within the health system. The nonprofit goes out into the Dallas-Fort Worth community in their mobile heart center, providing free blood pressure and glucose testing. They also help people access health insurance and mental health care.

Robinson advises others, “One of the biggest things we ignore is the mental toll health issues take on us. Whatever your fight is, testify to how it has made you stronger and not weaker. Fight not just for yourself but for others. Continue to take it personally. Let’s stay in good trouble.”

Tanika Gray Valbrun

Journalist and Founder of The White Dress Project

Since adolescence, Tanika Gray Valbrun experienced heavy uterine bleeding and pain, but it took several years and many doctors before she was diagnosed with uterine fibroids in 2007. She underwent several medical procedures, including three myomectomies to remove fibroids.

“Any person with a uterus can get uterine fibroids, but it disproportionately impacts Black and minority women,” she said. In fact, Black women are diagnosed more frequently and at younger ages—between 29 and 39—than any other group of women.

After her diagnosis, she formed The White Dress Project, a nonprofit organization, to support others affected by uterine fibroids. “I wanted to create a community for people managing life with fibroids because, for me, for so long, I felt very alone,” she said.

The organization is dedicated to raising awareness and supporting fibroid education and research. In 2021, they authored legislation to name July as Uterine Fibroids Awareness Month.

Gray Valbrun hopes to improve education for young women by teaching them that irregular, painful periods are not normal and can be a sign of uterine fibroids.

Tanika encourages others with fibroids to be their own best health advocate: “You are the expert and CEO of your body. Be confident in knowing that.”

Kamili Wilson

Founder and CEO of Menopause Made Modern by Claret Circle

Kamili Wilson started experiencing changes to her menstrual cycle, mood swings, and other menopause-related symptoms at 43. She was surprised by how unprepared she was for this transition.

“The erratic nature of my symptoms and bouts of hostility and rage I experienced early on was challenging,” said Wilson. “The mood swings were unpredictable, often surfaced at work, and impacted my family relationships.”

Wilson used Google to self-diagnose herself as being in perimenopause after she had symptoms for several months. As a Black woman, she was particularly interested in the insights and stories unique to her demographic, but what she found online was insufficient. Studies have shown that Black women experience higher levels of hot flashes, poorer sleep quality, shorter sleep duration, and an increased risk of depression.

“I was disappointed to find a lack of representative images and insights for women of color—let alone Black women,” said Wilson.

Wilson created Menopause Made Modern, a website highlighting inclusive experiences, to make it easier for women of color to navigate menopause and empower themselves to take control of their health. “My goal was to create a credible, trusted, and validating resource with excellent content that helps women of color and elevates discussions about menopause,” she said.

Wilson’s advice to other women going through menopause: “Suffering isn’t inevitable,” she said. “Get help. Talk to your doctor. If they can’t help you, find another one.”

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Editors

Jennifer Barrett, Jennifer Berger, Daniel Greaves, Mark Hassenfratz, Brit Haines, Teresa Maalouf, MPH, Vera Sizensky, Regina C. Windsor, MPH, RDN

Read the original article on Verywell Health.