Collection

Medical Hero Stories

Our Medical Hero spotlight library amplifies patient voices by sharing different experiences, insights, and information about medical conditions directly from clinical trial participants, care partners of patients, and patient advocates.

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Nicole & Chuck Johnson, Navigating ALS

Katie shares her story as an ocular melanoma survivor and the role clinical research played in her treatment.

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Alicia Dellario, Ovarian Cancer Clinical Trial Participant

Alicia Dellario shares her story as an ovarian cancer survivor clinical trial participant and how clinical research saved her life.

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Allison Kuban, Pancreatic Cancer Clinical Trial Participant

Allison shares her experience living with pancreatic cancer and participating in clinical trial.

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Amy Gietzen, Scleroderma Patient Advocate

Amy shares her experience living with scleroderma and participating in clinical research.

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Angie Volk, MS Advocate

Angie shares her experience living with Multiple Sclerosis and her passion for patient advocacy.

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Brittany Foster, Pulmonary Hypertension Patient Advocate

Britt shares her experience navigating the healthcare system and living with complex medical diagnoses.

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Dee Burlile, Scleroderma Clinical Trial Participant & Patient Advocate

Dee shares her experience as a scleroderma patient advocate and clinical trial participant.

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Desiree DeLuca-Johnson, Breast Cancer Clinical Trial Participant

Desiree shares her experience finding a clinical trial after her breast cancer diagnosis.

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Donald MacIntosh, Alzheimer’s Advocate

After a 25-year career as a lawyer, Donald was shocked when he was diagnosed with Alzheimer's disease.

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Reverend Donna Matlach, Eosinphilic Asthma Clinical Trial Participant

Donna's journey with severe eosinophilic asthma led her to life-saving treatments and clinical trial advocacy.

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Ella Balasa, Cystic Fibrosis Advocate & Patient Engagement Consultant

Ella shares her own experience living with Cystic Fibrosis, clinical research, and her journey to becoming a full-time patient advocate.

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Fred Neubauer, Cholangiocarcinoma Patient Advocate

Fred shares his battle with Cholangiocarcinoma, a rare form of cancer, and his hope to participate in clinical research.

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Gail Graham, HIV Patient Advocate

Gail shares her experience with HIV and how clinical research, patient advocacy, and the support of her community made an impact.

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Jackie Zimmerman, MS Patient Advocate

Diagnosed with relapsing-remitting MS at just 21, Jackie turned her personal journey into a mission to support others.

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Jameisha Brown, Burkitt’s Lymphoma Clinical Trial Participant

Jameisha shares her story battling cancer as child and how clinical research participation changed her life.

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Jillian McNulty, Cystic Fibrosis Advocate

Medical Hero Story: Jillian McNulty, Cystic Fibrosis Advocate

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Jonathan Sari, MS Clinical Trial Participant

Jonathan participates in clinical trials for his progressive MS, with the hope that a new treatment will save his life.

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Jenn McNary, Three Sons & Three Rare Diseases

Jenn shares her experience as a mother to three children who have rare diseases with serious physical impacts.

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Juana Espino, Motherhood & Cervical Cancer

As a new mother, Juana was diagnosed with cervical cancer and made the decision to join a clinical trial for treatment.

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Kaamilah Gilyard, Lupus Advocate & Clinical Trial Participant

A long-time lupus patient and advocate, Kaamilah is passionate about advocacy and spreading awareness in her community.

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Katie Doble & Her Caregivers: Facing Ocular Melanoma

Katie shares her story as an ocular melanoma survivor and the role clinical research played in her treatment.

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Katie Hill, Appendix Cancer Clinical Trial Participant

Katie, an appendix cancer clinical trial participant, shares her experience and advice.

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Katie Klatt, Battling COVID-19

After working on the front lines during the pandemic, Katie shares her experience as a both a nurse and patient herself.

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Kimberly Dorris, Graves’ Disease Patient Advocate

After her Graves' Disease diagnosis, Kimberly Dorris pursued patient education and advocacy full time.

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Kim Zukerberg, Ovarian Cancer Clinical Trial Participant

Kim shares her experience battling ovarian cancer and the impact of clinical trial participation on her health.

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Kyle Bryant, Friedreich’s Ataxia Clinical Trial Participant

Kyle shares his experience of being diagnosed with Friedreich's Ataxia at age 17 and how cycling has played a part in his treatment and advocacy work.

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Leah Crocker, Lupus Patient Advocate

Leah shares her medical journey to being diagnosed with lupus and how clinical research has played a positive role in her treatment.

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Lee Giller, Breast Cancer Clinical Trial Participant

Medical Hero Story: Lee Giller & BRCA1

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Luanne Bonanno, Diabetes Clinical Trial Participant

When LuAnne’s oldest daughter was diagnosed with gestational diabetes, LuAnne decided it was time to take action by participating in a trial.

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Madhura Balasubramaniam, Crohn’s Disease Advocate

Madhura shares her unique perspective as an Indian woman living with IBD- a condition that faces stigma in the South Asian community.

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Marc Yale, Mucous Membrane Pemphigoid Advocate

Marc shares his experience living with Pemphigoid and his passion for patient advocacy.

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Melanie and Aaron Havert, Hemophilia Patient Advocate & Caregiver

Melanie and Aaron share their journey navigating Hemophilia A for Aaron and their daughter, Eleanii.

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Melinda Bachini, Cholangiocarcinoma Clinical Trial Participant

After being diagnosed with Cholangiocarcinoma, Melinda shares how clinical trials gave her hope.

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Melvin Mann, Chronic Myelogenous Leukemia (CML) Patient Advocate

Medical Hero Story: Melvin Mann & Chronic Myelogenous Leukemia (CML)

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Michael Herman, Multiple Myeloma Clinical Trial Participant & Advocate

Mike's passion for patient advocacy was sparked after receiving a shocking diagnosis of multiple myeloma.

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Nia Grant, Type 1 Diabetes Clinical Trial Participant

Nia shares her experience as a passionate advocate and clinical trial participant for Type 1 Diabetes.

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Noa Greenwood, Canavan Disease Clinical Trial Participant

The Greenwood family shares their experience navigating their daughter's rare disease diagnosis and the difference clinical research has made for Noa.

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Pat Erickson, Parkinson’s Disease Advocate

When Pat Erickson, 57, was diagnosed with Parkinson’s disease 12 years ago, she refused to let it define her.

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Phyllis Kaplan, Type 1 Diabetes Clinical Trial Participant

Phyllis shares her story as a long-term advocate and and Type 1 Diabetes patient.

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Remembering Rachel Minnick, Clinical Trial Advocate

Rachel's family and colleagues share the lasting impact she left as a mother, clinical trial participant, and patient advocate.

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Rachel Petties, Congenital Generalized Lipodystrophy Caregiver & Advocate

Rachel Petties, a mother of five, refuses to let her daughter’s rare genetic disorder define the lives of their family.

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Richie Khan, Wolfram-Like Syndrome Patient Advocate

Richie hopes to bring awareness and education about his rare diagnosis to the research community.

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Scott Germain, PTSD Patient Advocate

Scott shares his experience getting treatment for PTSD and a TBI and his passion for bringing awareness to these issues in the veteran community.

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Sandy Morris, ALS Advocate

Medical Hero Story: Sandy Morris, ALS Advocate

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Shanelle Gabriel, Lupus Clinical Trial Participant & Advocate

Shanelle shares her experience living with lupus and promoting awareness and education in her community.

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Shauna Whisenton, Sickle Cell Disease Advocate

Shauna shares her experience battling SCD and how advocacy has become a part of her everyday life.

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Sharan Khela, Crohn’s Disease Patient Advocate

Katie shares her story as an ocular melanoma survivor and the role clinical research played in her treatment.

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Shira Kaplan-Walker, Lupus Patient Advocate

Shira's shares her healthcare journey with lupus and the importance of advocating for yourself as a patient and others in your community.

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Tina Aswani Omprakash, Crohn’s Disease Clinical Trial Participant

Tina’s path to becoming a health and disability advocate began with her own battle against Crohn’s disease.

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TJ Sharpe, Melanoma Patient Advocate

When melanoma unex­pectedly returned after a successful surgery twelve years prior, T.J. Sharpe was both a husband and a father.

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Tom Smith, Rare Disease Advocate & Patient Engagement Consultant

Tom shares how his own experience living with cystic fibrosis has helped share a career focused on patient engagement and advocacy.

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Dr. Tracy Dixon-Salazar, Lennox Gastaut Syndrome Advocate & Caregiver

Tracy shares her experience as a caregiver for her daughter Savannah who lives with LGS, a developmental brain disorder.

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Trishna Bahardia

Medical Hero Spotlight: Trishna Bharadia, Advocate for MS & Other Chronic Conditions