Mel Mann | Search profile

Mel Mann

@mel_mann_leukemia486K total followers

About

World’s Longest-Living Gleevec & TKI Survivor 🎗️ 31 years of defying the odds and making medical history. My mission is to turn "terminal" into "treatable" through patient advocacy, clinical trial education, and the power of hope. ✨ Keynote Speaker | Patient Advocate | Living Proof Sharing the journey to empower yours. Because a diagnosis isn’t the end—it’s a new chapter of resilience. Follow along for inspiration and the latest in patient advocacy. Beating the odds, one day at a time. 🙏

Pinned

19:59

Today, on World #CML Day (9/22), I pause to reflect on a journey that began more than 30 years ago with a life-changing diagnosis of chronic myeloid #leukemia. At that time, the future was uncertain and long-term survival was rare. By the grace of God, the dedication of researchers, and the breakthrough that came with clinical trials for Gleevec (imatinib), I stand here today as the longest-living #Gleevec survivor — part of a community of over a million survivors worldwide, and blessed to have lived more than 30 years beyond my diagnosis. This milestone is not mine alone. It belongs to every patient who entered a trial, every doctor who pushed science forward, every caregiver who offered strength, and every advocate who refused to give up hope. I’ve captured some of my journey, along with three decades of patient advocacy, in this 20-minute video. My hope is that it inspires patients and families to see that survival, progress, and purpose are possible. Together, let’s continue to shi

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1 yr

8:18

World Record Bone Marrow Drive with 10,672 people

YouTube

12 yrs

Gleevec’s 25th Anniversary I’m honored to be part of the story. This drug changed cancer treatment – and medical research – forever : Short Wave Listen on Apple, Spotify, or NPR https://www.npr.org/2026/05/11/nx-s1-5812534/gleevec-cancer-medicine-drug-treatment-research

Instagram

4 mths

IF I HAD ONLY 3 MINUTES TO TELL A CANCER PATIENT EVERYTHING I KNOW ABOUT LIVING WITH CANCER, THIS LETTER IS WHAT I WOULD SAY. Breathe. And it’s okay to be scared. Fear doesn’t make you weak; it means you understand the stakes. Speak up. Ask for second opinions. Ask about clinical trials early — not as a last resort. Be a partner with your medical team, not a passenger. Hope is not denial. Hope is a strategy. It’s showing up for the next appointment. It’s taking a pill, even when you’re tired of pills. Stay in the fight longer than you think you can. Sometimes the next option, the one that works, is closer than it looks. You can be realistic and hopeful at the same time. You are more than your diagnosis. You are still a parent, a spouse, a friend, a child of someone, a dreamer, a human being. Help someone when you can. Even a small act like answering a question that another patient has, or sharing your story can give your suffering a purpose. And if you forget any of this — t

Instagram

9 mths

21:08

I WAS BLESSED TO BE A PARTICIPANT IN THE GREATEST CANCER BREAKTHROUGH OF THE 21st CENTURY #GLEEVEC In this video, Dr. Brian Druker, MD, the researcher-physician behind the lifesaving drug #Gleevec, which works for 11 different cancers, discusses the origin of the drug with three of the original phase one clinical trial patients as he successfully prepared to run the 2025 Boston Marathon along with his daughter Julia. He and Julia also raised a significant amount of money for cancer research as past of the Leukemia and Lymphoma Society’s Team In Training. Over 1 million CML patients alone have benefited from the Gleevec (Imatinib) breakthrough. Gleevec saved me from terminal leukemia 27 years ago. It was the first Tyrosine Kinase Inhibitor (TKI). There are now over 60 FDA-approved TKIs, which have helped millions of people. Watch the whole video here: https://lnkd.in/emZ6y3qt #TyrosineKinaseInhibitor #TKI #CML #leukemia #ClinicalResearch #clinicaltrials #LLS

Instagram

1 yr

“THE MAN WHO WOULDN’T DIE” Sharing my story “From Terminal #Cancer to 24 Year Survivor” on the Mayor Freeman Bosley Jr Show, Hallelujah AM 1600, in Saint Louis. #ClinicalTrials #Gleevec #Leukemia (Please share to give hope to others)❤️

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7 yrs

Links

https://x.com/MelDMann

https://www.linkedin.com/in/meldmann/

Facebook

https://www.facebook.com/share/1GqL2vNEyd/?mibextid=wwXIfr

YouTube

https://www.youtube.com/@mdmann1

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Latest posts

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 https://t.co/HQSSQHHK9h #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 https://t.co/RJUEXMHQnt #TCellLymphoma #Alectinib #BoneMarrowTransplant #RareBloodCancer

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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 https://t.co/XPGHfjBd9W #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 https://t.co/74is0WW0Zg #LAD1 #GeneTherapy #ClinicalTrial #RareDiseaseAdvocacy

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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 https://t.co/FFDHSwmxYo #DuctalCarcinomaInSitu #BreastCancer #PartialMastectomy #CancerCaregiving

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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 https://t.co/7nkvF1eYpe

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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 https://t.co/hbkzM620eS

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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 https://t.co/LQ5GHJm0If

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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 https://t.co/AE3VtfFiOh

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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 https://t.co/lPmj4taZIL

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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 https://t.co/NXpiT3vlPT

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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: https://t.co/JGvCSnNldr Story via @HopkinsMedicine #RareDisease #Immunology #PatientSpotlight

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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: https://t.co/eqBQcgluO9 Story via @HopkinsMedicine #LongCOVID #PatientAdvocacy #PatientSpotlight

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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: https://t.co/xXVYVroOpn Story via @AmericanHeart #HeartDisease #HypertrophicCardiomyopathy #PatientSpotlight

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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: https://t.co/dUCH1edcqs Story via @HopkinsMedicine #RareDisease #Epilepsy #PatientSpotlight

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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: https://t.co/MMPYgkw6ze Story via @ClevelandClinic #RareDisease #GeneticDisease #PatientSpotlight

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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: https://t.co/UUoNd5OiZV Story via @BostonChildrens #BrainHealth #PatientSpotlight #Pediatrics

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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: https://t.co/jaP3E5G3X7 Story via @ClevelandClinic #AplasticAnemia #RareDisease #PatientSpotlight

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PATIENT SPOTLIGHT Marianna (Parry-Romberg Syndrome) At 14, Marianna noticed an indentation developing on her forehead. After several medical visits, she was diagnosed with Parry-Romberg syndrome, a rare condition that causes progressive loss of soft tissue on one side of the face. Treatment included reconstructive procedures using fat-transfer techniques, and she continues to receive follow-up care as she grows. Read story here: https://t.co/QvEUa910af Story via @HopkinsMedicine #RareDisease #ParryRombergSyndrome #PatientSpotlight

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PATIENT SPOTLIGHT Brody Kalk (MOGAD) Brody began experiencing serious neurological symptoms at age 10, followed by multiple hospitalizations and relapses. After specialized testing confirmed MOGAD, a rare autoimmune neurological disease, his family sought specialized care at Mayo Clinic. Brody later joined a clinical trial and now shares his experience with other families facing the disease. Read story here: https://t.co/Zpo8BgHAeS Story via @MayoClinic #MOGAD #RareDisease #PatientSpotlight

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