Based in Colorado, Risa August is an author, Speaker, Gestalt practitioner and Patient Advocate for rare pituitary diseases. She has been sharing her story for the past five years, and more recently in her memoir The Road Unpaved – Border to Border with a Brain Tumor and a Bike. In addition to speaking at conferences for leaders in pharmaceuticals, medical professionals, and patients, her work is published on blogs and in other smaller publications. Her most popular personal essay, “Marshmallow Clouds,” has been translated into Spanish. Through her personal transformation, Risa has learned and practiced removing limiting beliefs, shifting her perspective, and embracing a full life.

Risa has a B.A. in geography, a certification in the Gestalt Coaching Method, and a certificate in mindfulness-based cognitive therapy. She has been living with a pituitary tumor and rare disease for over a decade and offering words of inspiration and information to audiences in hopes of saving others from heading down a bumpier road.

A girl with sparkles in her hair and once an Ironman athlete, Risa still has a passion for her bike and barbells. With her genuine curiosity and love for trying new (and old) things, you may find Risa taking Bollywood or hip-hop dance lessons, trying a silks aerialist or boxing class, going indoor skydiving, or guiding an inspirational workshop in creativity.

Rucha Shah attained her Master of Science degree in Clinical Research Organization and Management from the Drexel University School of Medicine in Philadelphia, PA. She further completed certificate coursework in Advancing Health Equity from ECOG-ACRIN Cancer Research Group and Research Advocacy Network as well as certificate coursework in Artificial Intelligence in Pharma and Biotech from the Massachusetts Institute of Technology. Currently, Ms. Shah works as a clinical research project manager within the oncology space, an area in which she has a decade of experience. She has proven experience in managing study teams and study sites as well as working collaboratively with various functional teams to meet study deliverables.

Additionally, Ms. Shah’s passion lies in advocating for accessible healthcare and improving health outcomes for the broader patient community, especially the next generation of patients. Currently, Ms. Shah leads an advocacy group for patients and caregivers at the Children’s Hospital of Philadelphia and the Hospital of University of Pennsylvania. She also collaborates with like-minded organizations and pharmaceutical companies on bringing forth initiatives which make meaningful connections within the disease community, improve the quality of life for patients and to increase awareness within the larger community. She strives to apply the "lessons learned" from her patient advocacy experiences to her professional work by building the trials to be more patient centric and accessible.

Recent Works: Woolford T, Andemariam B, Blaylark R, Colasanti R, Shah N, Jonassaint C, Trimnell C, Sheth S, Davis J, Gallagher E, Zaidi AU, John H, Shah R. Setting Industry Standards for Patient Engagement, Partnership and Care: The Patient Vision Project. Poster and Oral presentation at NORD. October 16, 2023. Washington DC, USA.

Dr Sondra Butterworth is a visionary leader and advocate for equality, diversity, and inclusion (EDI). Sondra’s work is particularly focused on inequalities within health and social care sectors for rare disease patients and communities in the global majority (ethnic minority).

As a British born black black woman, with Afro-Caribbean roots tracing back to St. Kitts, Sondra's parents moved to the UK as part of the Windrush generation. They instilled in Sondra a strong work ethic, and a sense of resilience, community empowerment, and a passion for humanitarian work.

As one of the very few black Community Psychologists in the UK, Sondra brings her expertise in mixed-methods research, education, and EDI to lead groundbreaking initiatives like EDIRA (Equality, Diversity, and Inclusive Research Association) EDIRA Academy: which is an online platform for learning and networking, RCNet (RareQoL Community Network) and MELD (Minority Ethnic Leadership Development). Sondra's work has impacted countless individuals by advancing initiatives to improve health equity and address barriers to inclusion.

Sondra was recently recognized with the prestigious Best DEI Social Enterprise Founder 2024 (UK) title by the Global CEO Excellence Awards, solidifying her role as a trailblazer in DEI and social enterprise leadership. This award celebrates her tireless dedication to building more inclusive frameworks within research, healthcare, and social services. RareQoL Consulting offers consultancy services to not-for-profit organizations, healthcare providers, and the pharmaceutical industry.

Celebrating the ‘Doers’ Event

Join Us at ‘Celebrating the Doers’ Event – November 7, 2025

Dr. Butterworth and EDIRA Partners will host the ‘Celebrating the Doers’ event on November 7, 2025, at the University of Birmingham, UK. This event, a hallmark of EDIRA's mission, shines a spotlight on individuals and organizations that are actively driving positive change in research and social care. Attendees will have the opportunity to engage with EDI professionals, policymakers, and community leaders to discuss best practices, celebrate achievements, and network with others passionate about inclusion.

For more information about Dr Sondra Butterworth and her groundbreaking work with RareQoL and EDIRA, or to attend the ‘Celebrating the Doers’ event, visit EDIRA. https://rareqol.com/edira-2/

Consultancy Services

Sondra’s ability to understand the complex dynamics of diversity and inclusion has made her a sought-after consultant, known for her clear, actionable strategies.

Whether your organization is looking to improve its EDI framework, engage in inclusive research, or develop leadership programs, Dr. Butterworth is ready to provide support that drives real, lasting change. Get in touch today to discover how her consultancy services can help your organization achieve its goals.

For more details on how Dr. Sondra Butterworth can support your organization, visit https://rareqol.com/rareqol-consulting/

Dr. Rachna Rekhi is a board certified pediatrician and lifestyle medicine physician. Prior to attending medical school she earned a degree in Food Science and Human Nutrition from the University of Florida. After university, she worked as a researcher in the Cardiology Department at Stanford University. She had aspirations of becoming a cardiologist until she attended medical school at McGill University in Montreal, Canada and had a revelation that many adult diseases begin in childhood. After that she focused her energy on becoming a pediatrician in hopes of influencing families to adopt healthier habits at a young age.

She has worked at Kaiser Permanente, a large healthcare system, for 13 years. During this time she recognized that children are capable of making great choices about their health if they have the proper knowledge, and they need to be a part of the conversation about their health. She believes that children have the power to influence the adults in their life to be healthier. She co-hosts a podcast called Wellness Wizards with her 9 year old son and 11 year old daughter, where they discuss, simplify, and gamify lifestyle medicine topics including primarily plant based nutrition, physical activity, restorative sleep, reduction of risky substances, social connectedness, and stress reduction. She loves traveling and cooking healthy food with her children. Last year the family took a year off and traveled to 19 countries together, and since then they have made it a goal to travel to all 7 continents together.

You can follow their channel at https://www.youtube.com/@wellnesswizardsofficial.

You can also check out their audio podcast here:

Spotify: https://open.spotify.com/show/0EFWUCmNamD6pLJimbOJxU?si=5de277020f3147ed

Apple Podcast: https://podcasts.apple.com/in/podcast/wellness-wizards/id1713230846

Amazon: https://www.amazon.in/Wellness-Wizards/dp/B0CLKW18P1

Wellness Wizards

Youtube

Spotify

Apple Podcast

Melanie Brooks is the author of the memoir A Hard Silence: One daughter remaps family, grief, and faith when HIV/AIDS changes it all (Vine Leaves Press, 2023) and Writing Hard Stories: Celebrated Memoirists Who Shaped Art from Trauma (Beacon Press, 2017) She teaches creative nonfiction in the M.F.A. program at Bay Path University and in the M.F.A. program at Western Connecticut State University and professional writing at Northeastern University. She holds an M.F.A. in Creative Nonfiction from the University of Southern Maine’s Stonecoast writing program and a Certificate in Narrative Medicine from Columbia University. She has had numerous interviews and essays on topics ranging from loss and grief to parenting and aging published in the The Boston Globe, HuffPost, Yankee Magazine, Psychology Today, The Washington Post, Ms. Magazine, Creative Nonfiction, and other notable publications. She lives in New Hampshire with her husband, two children (when they are home from university), and chocolate Lab.

Website: https://www.melaniebrooks.com/

‘A Hard Silence’ book from: https://shorturl.at/uHFLS

Megan-Claire Chase, aka Warrior Megsie, is a patient advocate and breast cancer survivor from Atlanta, Georgia. Her blog, Life on the Cancer Train, is famous for being authentic, raw, and informative, with a twist of humor, where she shares her experiences of being a young adult cancer survivor while advocating for better treatments and resources. The blog is syndicated on Cancer Health Magazine's website. Megan-Claire is a highly sought-after blogger and influencer in the cancer community nationally and internationally.

In 2023, Megan-Claire was featured in Stories from the Stage episode "Beyond Cancer," which aired on PBS and World Channel. Currently serves on Bayer Oncology's Digital Patient Council, and the Oncology Data Advisory Editorial Board, and is a Board Member for the LYTE Foundation. She hosts two podcasts, The Other Side of Cancer and Our BC Life, and ongoing collaborations with Teen Cancer America to create inclusive content for social media and patient-facing collateral.

Megan-Claire co-authored abstracts and presented posters, including Genetic Testing in Metastatic Breast Cancer in the USA: A Podcast | Oncology and Therapy (springer.com), and The Impact of Triple-Negative Breast Cancer in Black Women at the San Antonio Breast Cancer Symposium in 2023, and "You don't really have a say in anything...like you don't have any options": AYA Cancer Survivors' Perspectives on Fertility Preservation Conversations with Healthcare Providers presented at the 16th Annual American Psychosocial Oncology Society (APOS) in 2019 and accepted for a Poster Symposia II: Sexual and Reproductive Health oral presentation at the annual meeting of the Society for Adolescent Health and Medicine and published in the medical journal Psycho-Oncology.

Megan-Claire's work is featured in several publications, including Cancer Health, Cancer Today, CURE Magazine, Count Me In, Everyday Health, Elephants and Tea, Dating Roo (UK), Voyage ATL, Humor Beats Cancer, IHadCancer.com, RETHINK Cancer, Pharmaphorum (UK), and WebMD.

Blog: Life on the Cancer Train at www.warriormegsie.com

Social Media Links:

Instagram - https://www.instagram.com/warriormegsie/

Twitter - https://twitter.com/warriormegsie

LinkedIn - https://www.linkedin.com/in/megan-claire-chase/

Other Links to Projects/Articles:

Stories from the Stage on PBS and World Channel episode: Beyond Cancer Watch here.

Cancer Health magazine: You Can’t Escape Race in Cancer Read here.

Oncology Data Advisor: AYA Cancer Awareness Week: Creating Welcoming Spaces for Support and Advocacy With Dr. Lauren Ghazal, Megan-Claire Chase, and Allison Rosen Listen here.

The Patient Story: Megan-Claire's Breast Cancer Story: My Symptoms Were VERY Different Watch here

Pfizer: Genetic Testing in Metastatic Breast Cancer in the USA: A Podcast | Oncology and Therapy (springer.com)

Joy Rios, MBA, stands as a distinguished Health IT strategist and a recognized expert in value-based care payment models. Celebrated for her pioneering spirit, Joy was awarded the 2023 HIMSS Changemaker of the Year award for her significant contributions to women in health IT, underscoring her commitment to diversity, equity, and inclusion in the healthcare sector.

As founder and host of the "HIT Like a Girl" podcast, and the Like a Girl Media agency, Joy is dedicated to elevating diverse voices and advancing DEI initiatives within healthcare. Her expertise not only bridges gaps between health and technology but also champions the creation of equitable healthcare environments.

Sean Wachter's life is a remarkable narrative of resilience, determination, and transformation. After overcoming a life-changing accident, Sean faced a grueling health battle that led to the discovery of a golf ball-sized lesion in his cerebellum. Despite a challenging journey through misdiagnosis and the eventual confrontation with Stage 4 melanoma, including brain metastases and leptomeningeal disease, Sean's spirit remained unbroken.

An accomplished former two-sport collegiate athlete and professional football player, Sean has channeled his relentless energy into professional wrestling, turning it into a platform for raising awareness and funds for cancer research. His return to the ring is not just a personal triumph but also a powerful gesture of defiance against his medical challenges.

Beyond the ring, Sean's endeavors extend to significant charitable work. He collaborates with notable organizations like The V Foundation, the Melanoma Research Alliance, and Memorial Sloan Kettering Cancer Center, contributing to brand awareness and fundraising efforts. His journey is a poignant reminder of the power of resilience and the profound impact one can have in the face of adversity.

Sean's story, highlighted by his remarkable return to professional wrestling, is a testament to the strength of the human spirit. He embodies the essence of not just surviving but thriving, inspiring countless others with his journey.

Nancy (she/her) is Breast Cancer Prevention Partners’ (BCPP) Director of Program and Policy and works at the state and federal levels to advance public policy to reduce exposures to toxic chemicals. Before joining BCPP, Nancy spent over 20 years in Washington DC advocating for numerous causes, including civil rights for women and the GLBTQ+ community. She graduated from the University of Pittsburgh with a Bachelor of Science in Biology and earned a Masters degree in Biological Oceanography from the University of Connecticut. Nancy is an avid outdoors person, spending her spare time hiking and birding in Northern California and beyond.

In the 13 years Nancy has worked for BCPP, she has focused on several issues related to breast cancer prevention including strengthening the country's broadest law governing synthetic chemicals – the Toxic Substances Control Act; implementation of the ban on several phthalates in toys and childcare articles; and advocating for federal resources to support the National Institute of Environmental Health Sciences and environmental health programs at the Centers for Disease Control and Prevention, including the biomonitoring and health tracking programs. Her more recent experience has focused specifically on state legislative work, including BCPP’s co-sponsorship of legislation to remove toxic chemicals from plastic products, require the disclosure of ingredients in cleaning, and banning forever per- and polyfluoroalkyl substances (PFAS) from firefighting foams, paper-based food packaging, and textiles.

Breast Cancer Prevention Partners is a science-based national organization working to eliminate toxic chemicals and other environmental exposures linked to breast cancer. You can learn more about Nancy, BCPP, and ways to get involved at www.bcpp.org.

Find us on our various socials:

Instagram: www.instagram.com/bcppartners

X: twitter.com/BCPPartners

YouTube: www.youtube.com/c/BreastCancerPreventionPartners

TikTok: www.tiktok.com/@bcppartners

LinkedIn: www.linkedin.com/company/breast-cancer-prevention-partners

Jade Gibson’s connection to cancer presented itself at the age of 16 when she was diagnosed with late-stage ovarian cancer. The experience ignited a desire to help individuals and families affected by cancer, leading her to pursue studies at the Harold P. Freeman Patient Navigation Institute. There she received education on the newly developing field and learned how to apply the navigation model to eliminate common barriers for patients moving through the healthcare system.

To date, Ms. Gibson has entered her 19th year of survivorship – lending her voice to address disparities that plague historically marginalized AYA patients from rural communities. As a champion for cancer advocacy, she participates in interviews, virtual conferences, webinars, marketing research, and fundraising. Additionally, serving in the following capacities:

• Committee member for the Georgia Cancer Control Consortium (GC3) Survivorship Workgroup and Georgia Prostate Cancer Roundtable Steering Committees.

• Patient Centered Outcomes Research Institute (PCORI) - Adolescent Young Adult (AYA) Advisory Panel project focusing on identifying barriers to recruiting and engaging underrepresented adolescent and young adults in cancer survivorship research.

• BVOGUE participant in the “Centering the Marginalized Voices of Black Patients with Gynecological Cancer as a First Step in Healthcare Curriculum Development,” study supported by MOQC (the Michigan Oncology Quality Consortium).

• Ovarian Cancer patient expert with Merakoi, creating healthcare solutions to benefit people living with a chronic illness.

• Citizen Scientist for the Ovarian Cancer Outreach with the “Connecting Families to Overcome Ovarian Cancer” study led by Emory University.