Mel Mann | Cancer Survivor 🎗️ Patient Advocate
@MelDMann

World’s Longest-living Gleevec & TKI survivor. Early targeted-therapy trial patient. MBA, M.Ed. U.S. Army Major (Ret.). Amplifying Patient’s Stories.

 Atlanta, GA
profile.google.com/@mel_mann…
Joined June 2009
462 Photos and videos
20 yrs ago, I had terminal #Cancer with no cure in sight. Read about my miracle! curetoday.com/community/mel-… #Retweet https://nitter.net/t.co/kWXiiOKQw3
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PATIENT SPOTLIGHT Jennifer Robertson (Stage IV Lung Cancer) Jennifer Robertson was told she had only three months to live after a stage IV lung cancer diagnosis in 2024. Her story follows the treatment and expertise that helped her reach 18 months and counting. It is a clear reminder that time, options, and specialized care can change the picture. Read story here mdanderson.org/cancerwise/st… #LungCancer #StageIVLungCancer #CancerSurvivor #MDAnderson
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PATIENT SPOTLIGHT Emma Operacz (ALK-Positive Anaplastic Large-Cell Lymphoma) At 21, what she thought was a UTI became stage IV T-cell lymphoma that did not respond to first-line chemo and spread to her brain. At Cleveland Clinic, alectinib — a targeted therapy matched to her ALK driver — brought complete remission. Her sister Sara donated bone marrow for transplant, and Emma has since graduated and started a social-work path aimed at helping patients like her. Read story here my.clevelandclinic.org/patie… #TCellLymphoma #Alectinib #BoneMarrowTransplant #RareBloodCancer

Young Woman Overcomes Rare Blood Cancer With Innovative Drug Therapy and Bone Marrow Transplant

After overcoming advanced T-cell lymphoma, Emma wants to give back to others facing a similar diagnosis.

my.clevelandclinic.org
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PATIENT SPOTLIGHT Megan C. (Multiple Sclerosis) At 23, numbness that started in her feet climbed into her hands and walking became hard — an MRI and ER stay led to an MS diagnosis at UPMC. She completed plasmapheresis, then ongoing infusion therapy that also eased her juvenile idiopathic arthritis enough to stop Humira. Her lesions are fading with no new ones, and she is living without MS symptoms while staying on the six-month infusion schedule. Read story here share.upmc.com/2025/11/megan… #MultipleSclerosis #Plasmapheresis #InfusionTherapy #PatientAdvocacy
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PATIENT SPOTLIGHT Ava Langenhop (LAD-1) Ava was repeatedly hospitalized with severe infections before doctors diagnosed LAD-1. She then joined a UCLA gene-therapy clinical trial; five years later, she plays basketball and attends public school without those severe infections. Her story shows why rare immune disorders need durable treatment research and long-term follow-up. Read story here cbsnews.com/news/kids-always… #LAD1 #GeneTherapy #ClinicalTrial #RareDiseaseAdvocacy

They didn't understand why their kids kept getting sick. After a rare diagnosis, a new gene therapy...

Alicia and Jon Langenhop's three children were each diagnosed with a rare disorder. A clinical trial was "a no-brainer."

cbsnews.com
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PATIENT SPOTLIGHT Miriam Díaz-Gilbert (Ductal Carcinoma in Situ) After caring for her husband through colorectal cancer, Miriam faced her own DCIS diagnosis after a fall led to a mammogram. A partial mastectomy removed all signs of cancer, and she continued training for ultramarathons. Her story shows how caregiving can shape the way patients navigate care for themselves. Read story here cancertodaymag.org/cancer-ta… #DuctalCarcinomaInSitu #BreastCancer #PartialMastectomy #CancerCaregiving

Lessons Learned as a Caregiver and Patient | Cancer Today

After caring for her husband during his cancer treatment, Miriam Díaz-Gilbert was prepared to face her DCIS diagnosis.

cancertodaymag.org
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PATIENT SPOTLIGHT Marializa Holden (Diffuse Midline Glioma) Postpartum migraines led to an H3 K27M-mutant diffuse midline glioma. After surgery, chemo, and radiation, she joined an Ivy Brain Tumor Center Phase 3 ONC201 trial aimed at that mutation. Rare brain tumors still leave few targeted options—trial access can change the path. Read story here @IvyBrainTumCtr ivybraintumorcenter.org/blog…

Navigating Brain Cancer: Marializa's Pursuit of New Treatments at the Ivy Brain Tumor Center | Ivy...

In late 2022, Marializa Holden received devastating news that her migraines, which she initially thought were triggered by a change in hormones after giving

ivybraintumorcenter.org
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PATIENT SPOTLIGHT Marlaina Goedel (Type 1 Diabetes) Marlaina was the first participant in an investigator-led islet-cell transplant trial using tegoprubart at the University of Chicago. Within weeks she stopped insulin; two years later she remains insulin-independent, and the early cohort reported strong glucose control without severe hypos. The program is now moving toward a company-sponsored registrational path after an IND submission. Read story here @Type1Strong type1strong.org/blog-post/ma…

Marlaina Goedel Marks Two Years Insulin-Free After Becoming the First Patient in Eledon’s Groundb...

Marlaina Goedel made history as the first clinical trial participant to achieve insulin independence following a pancreatic islet cell transplantation using the investigational anti-rejection drug...

type1strong.org
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PATIENT SPOTLIGHT David Lane (Parkinson's disease) For years David needed medication every 90 minutes as Parkinson's tremors and stiffness took driving, work, and simple tasks like making a sandwich. At VCU Health, deep brain stimulation electrodes and a chest pulse generator were placed, then turned on in clinic—his movements eased within minutes. He says he feels better than he has in a decade and is already off one medicine, with room to cut more under monitoring. Read story here @VCUHealth mcvfoundation.org/news/stori…
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PATIENT SPOTLIGHT Jasmine Jones (Cystic Fibrosis) Diagnosed with cystic fibrosis as a baby, by 2025 her lungs, liver, and kidneys were failing—and drug-resistant lung bacteria made a simple liver transplant unsafe. In January 2026 UChicago Medicine surgeons gave her both lungs, a liver, and a kidney from one donor—Illinois’s first known transplant of that kind, and only the sixth in the U.S. Her new organs are free of CF; multi-organ planning can reopen options when one disease hits several systems. Read story here @UChicagoMed uchicagomedicine.org/forefro…

Illinois’ first quadruple-organ transplant of its kind saves patient with cystic fibrosis -...

After battling cystic fibrosis since infancy, Jasmine Jones received a life-changing quadruple-organ transplant at UChicago Medicine, including a new kidney, liver and pair of lungs from one donor.

uchicagomedicine.org
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PATIENT SPOTLIGHT Sierra Butler (Lupus) Treatment-resistant lupus put her in a wheelchair and nearly stopped her heart. At Cleveland Clinic she entered a CAR-T trial that reprograms her own T-cells to shut down the B-cells driving the disease. Early markers are improving; she is aiming for remission for the first time. Read story here @CBSNews cbsnews.com/news/lupus-clini…

She signed up for a complicated clinical trial. It may cure her lupus.

Sierra Butler was offered the opportunity to be just one of two people enrolled in a clinical trial looking at a therapy that could put her lupus into remission.

cbsnews.com
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PATIENT SPOTLIGHT Samuel Idahosa Sickle cell pain crises once put him in the hospital again and again. At UCLA Health he received Lyfgenia gene therapy — his own stem cells rewritten so new red cells do not sickle. Months later he is off pain medication and planning volleyball, swimming, and medical school. Read story here @UCLAHealth uclahealth.org/news/story/ne…

New UCLA graduate is among first to receive leading-edge sickle cell disease treatment at UCLA...

A new graduate of UCLA is considered cured of sickle cell disease after a novel gene therapy modified his red blood cells so they no longer sickle.

uclahealth.org
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PATIENT SPOTLIGHT Lucia Adarve For 18 years she carried a stack of labels—epilepsy, lupus, fibromyalgia—none of which fit. Whole genome sequencing at Cleveland Clinic’s Undiagnosed Disease Clinic found Jordan syndrome (PPP2R5D), with fewer than 500 confirmed cases worldwide. A name for the condition finally opened a real care plan. Read story here @CBSNews cbsnews.com/news/jordan-synd…

Teen's mystery illness diagnosed after a lifetime of symptoms: "It took 18 years to get an answer"

Lucia Adarve had a long list of symptoms that no one could diagnose. Her mother Lisa was determined to find an answer.

cbsnews.com
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PATIENT SPOTLIGHT Margie Wilson treated irregular bleeding as menopause—until a biopsy found stage I grade 3 endometrial cancer. Black women with this disease still have far lower five-year survival than white women. She found affirming care with Dr. Kemi Doll at UW Medicine and now co-builds ECANA so other Black women recognize warning signs early. Read story here @CancerTodayMag cancertodaymag.org/winter-20…

A Cause for Concern | Cancer Today

Margie Wilson is helping Black women understand their risk for endometrial cancer and teaching them not to ignore the warning signs.

cancertodaymag.org
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PATIENT SPOTLIGHT Nicholas (STAT1 Gain-of-Function) After years of severe infections and hospitalizations without a clear diagnosis, Nicholas was eventually found to have a rare genetic immune disorder. A bone marrow transplant and targeted treatment changed his course, and he is now living a much more active life. Read story here: hopkinsmedicine.org/health/c… Story via @HopkinsMedicine #RareDisease #Immunology #PatientSpotlight

Patient Story Nicholas: STAT1 Gain of Function

Dr. Jennifer Leiding is part of a study about a rare condition involving stem cell transplants, which has helped a Tampa Bay patient who has the condition.

hopkinsmedicine.org
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PATIENT SPOTLIGHT Shalisha Kennedy (Long COVID) After contracting COVID-19 in 2020, Shalisha Kennedy developed severe fatigue, shortness of breath and other symptoms that eventually forced her to stop working. Years later, she continues to navigate Long COVID while advocating for greater understanding and research into the condition. Read story here: hopkinsmedicine.org/news/new… Story via @HopkinsMedicine #LongCOVID #PatientAdvocacy #PatientSpotlight

One Woman’s Fight for Recovery Highlights Urgent Need for Long COVID Research

hopkinsmedicine.org
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PATIENT SPOTLIGHT Alison Conklin (Hypertrophic Cardiomyopathy) Alison inherited a heart condition that had already taken the lives of family members. After years of symptoms, she underwent open-heart surgery in 2018 to improve blood flow through her heart. Today, she is a mother, photographer, and advocate who uses storytelling to help others affected by heart disease feel less alone. Read story here: heart.org/en/news/2021/09/02… Story via @AmericanHeart #HeartDisease #HypertrophicCardiomyopathy #PatientSpotlight

As a teen, she saw her mom die from the same heart problem she inherited

Hypertrophic cardiomyopathy took her mother's life and might have taken hers, too, if not for a device implanted in her chest.

heart.org
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PATIENT SPOTLIGHT Aurora (GRIN2A-Related Disorder) Aurora began having seizures at just 7 months old, and despite medication, they became increasingly difficult to control. Genetic testing at Johns Hopkins All Children’s Hospital identified a rare GRIN2A mutation affecting her brain and optic nerve. Her family continues working with specialists as they navigate her condition and seek better treatment options. Read story here: hopkinsmedicine.org/news/art… Story via @HopkinsMedicine #RareDisease #Epilepsy #PatientSpotlight

From Crisis to Stability: One Family’s Journey Through Rare Disease and Resilient Care

After being diagnosed with a rare genetic mutation that caused seizures and life-threatening respiratory failure, Aurora has gained stability and improved quality of life through specialized ventil...

hopkinsmedicine.org
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PATIENT SPOTLIGHT Lucia Adarve (Jordan’s Syndrome) For nearly 20 years, Lucia Adarve and her mother searched for an explanation for seizures, developmental challenges and repeated medical emergencies. Whole-genome sequencing at Cleveland Clinic finally identified Jordan’s syndrome, a rare neurodevelopmental disorder. The diagnosis gave Lucia and her family a clearer path for managing her condition and connecting with research and support. Read story here: my.clevelandclinic.org/patie… Story via @ClevelandClinic #RareDisease #GeneticDisease #PatientSpotlight

Young Woman Receives Rare Disease Diagnosis After Decades of Searching

After nearly 20 years of unanswered medical questions, a rare diagnosis changed everything for Lucia and her mom.

my.clevelandclinic.org
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PATIENT SPOTLIGHT Malcolm (Brain Abscess) During a family trip, 8-year-old Malcolm suddenly became extremely sleepy, began vomiting and developed severe pain. Doctors discovered a brain abscess that required emergency surgery, followed by another procedure and 11 days in a medically induced coma. After 34 days in the hospital and rehabilitation, Malcolm returned home and is now back to playing basketball, baseball and flag football. Read story here: giving.childrenshospital.org… Story via @BostonChildrens #BrainHealth #PatientSpotlight #Pediatrics

Malcolm’s Summer Vacation Takes a Scary Turn | Boston Children's Hospital Trust

A quick decision to bring him to Boston Children’s saved his life.

giving.childrenshospital.org
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PATIENT SPOTLIGHT Laura Chapman (Aplastic Anemia) Laura Chapman was healthy and active until unusual fatigue and weakness led to blood tests showing dangerously low platelet levels. She was diagnosed with aplastic anemia, a rare disorder in which the bone marrow fails to produce enough blood cells. After transfusions and immunosuppressive treatment, Laura no longer needed transfusions within three months and gradually returned to exercise and everyday life. Read story here: my.clevelandclinic.org/patie… Story via @ClevelandClinic #AplasticAnemia #RareDisease #PatientSpotlight

Laura Chapman: Aplastic Anemia Patient Story | Cleveland Clinic

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