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Mackenzie's Mission
United States
Приєднався 5 вер 2017
Mackenzie’s Mission is focused on making a difference in the fight against amyloidosis. Three areas anchor our work - closing the educational gap in the medical community through the Amyloidosis Speakers Bureau (ASB); empowering patients and caregivers through our resource library and education hub; and supporting multiple world class institutions who conduct research and run clinical trials on amyloidosis.
Founded by Mackenzie Boedicker in 2017 following her diagnosis at age 23 with AL amyloidosis.
Founded by Mackenzie Boedicker in 2017 following her diagnosis at age 23 with AL amyloidosis.
Expert Insights Into Amyloidosis: AL Amyloidosis -The Past, Present, and Future
Dr. Morie Gertz, professor of medicine at the Mayo Clinic in Rochester and world renowned expert in amyloidosis, shares his views on the past, present, and future treatments of AL (light chain) amyloidosis. Over his four decades of experience with this disease, he has diagnosed and treated thousands of patients, advanced research, and managed countless clinical trials. This makes him the perfect professor to orate on the dramatic evolution of treating this historically devastating disease to the optimism of today, and the breakthrough world of tomorrow. This is a must-watch video from a legendary expert.
Переглядів: 221
Відео
Overview of Amyloidosis for Patients
Переглядів 20212 годин тому
This episode of All Things Amyloid is an adaptation of Amyloidosis Support Groups’ patient education video narrated by Michael York. You’ll hear a brief yet comprehensive overview of amyloidosis designed specifically for patients. It discusses what amyloidosis is, the wide range of symptoms, and which organs are typically involved. It focuses on the most common types, AL (light chain) and TTR (...
Overview of Amyloidosis for Clinicians
Переглядів 1012 годин тому
In this episode of All Things Amyloid, Dr. Sarah S. Lee, Assistant Professor, Division of Hematology, at the City of Hope, provides a brief yet comprehensive clinical overview of amyloidosis. Dr. Lee discusses what is amyloidosis, most common types, the wide range of symptom presentations, and which organs are typically involved. Focusing on AL (light chain) and TTR (transthyretin), she then go...
Welcome to the All Things Amyloid Podcast
Переглядів 1212 годин тому
In our inaugural episode, hear from Mackenzie on why she founded Mackenzie’s Mission, how her foundation works to make a difference in the amyloidosis community, and what you can expect from the All Things Amyloid podcast. We hope you’ll join us!
Expert Insights Into Amyloidosis: Amyloidosis and the Gut
Переглядів 134Місяць тому
Dr. Melissa Hershman, assistant professor from the OHSU Division of Gastroenterology & Hepatology, provides an informative overview of how, and where, amyloidosis can present in the G.I. tract. She reviews patient symptoms, many of which are nonspecific and can be associated with other more common issues, delaying diagnosis. Dr. Hershman goes through how G.I. amyloidosis is tested for, where in...
Expert Insights Into Amyloidosis: Central Nervous System and Ocular Involvement in hATTR
Переглядів 306Місяць тому
Dr. Chafic Karam, professor of neurology from the University of Pennsylvania, provides an informative overview of how certain mutations of hereditary transthyretin amyloidosis are being diagnosed in the central nervous system (CNS), such as the eye. It has been long believed that amyloidosis did not cross the blood brain barrier; however, evidence is showing otherwise. In addition, while most o...
Thoughts From A Patient: “Inspiring Future Clinicians”
Переглядів 602 місяці тому
Our patient speakers at the Amyloidosis Speakers Bureau are powerful educators and offer compelling insights. Have a listen to this medical student commenting back to Bill after hearing his journey. She talks about the impact it had on her and how she will carry lessons learned from him forward in her career. Indisputable evidence that patients are indeed powerful educators and can help shape c...
Expert Insights Into Amyloidosis: Diagnosing AL and ATTR Cardiac Amyloidosis
Переглядів 7032 місяці тому
Dr. Justin Grodin, a cardiologist and co-director of the UT Southwestern Multidisciplinary Amyloidosis Program, goes through the diagnostic process for AL and ATTR cardiac amyloidosis. He discusses key differences between AL and ATTR, and how typing of amyloidosis is paramount to consider in order to subsequently develop a treatment plan. He goes through a diagnostic algorithm to help clinician...
Expert Insights Into Amyloidosis:Timing & Cooccurrence of Symptoms Prior to AL Amyloidosis Diagnosis
Переглядів 2313 місяці тому
Dr. Anita D’Souza, associate professor of hematology and medical oncology from the Medical College of Wisconsin, discusses recent study findings regarding the timing and co-occurrence of symptoms within the three years prior to a diagnosis of light chain (AL) amyloidosis. Organized by organ system, Dr. D’Souza lists red-flag symptoms that patients may experience, typically presenting in varying...
Expert Insights Into Amyloidosis: Systemic Amyloidosis: You've Got to Think of IT to Diagnose IT
Переглядів 1354 місяці тому
Dr. Mat Maurer, cardiologist at Columbia University Irving Medical Center, discusses the importance of developing a broad differential in order to diagnose this rare, potentially life-threatening, yet treatable disease. He shares a typical but unfortunate case of cardiac amyloidosis, along with statistics of misdiagnosis and delayed diagnosis. He shares his view on the appropriate process for d...
Thoughts From A Patient: "My Survival Depends on My Physicians Communicating"
Переглядів 565 місяців тому
Our patient speakers at the Amyloidosis Speakers Bureau are powerful educators and offer compelling insights. Have a listen to this brief clip from Rayna. She talks about how important she felt it was for her survival that her physicians communicated.
Expert Insights Into Amyloidosis: AL Amyloidosis: Symptoms, Diagnostics and Challenges
Переглядів 3325 місяців тому
Dr. Kaur opens with a brief overview of the disease. Focusing on AL Amyloidosis, she shares how heterogeneously this disease presents - it can be very different from patient to patient, amplifying the diagnostic challenge. Symptoms may also be more commonly associated with other diseases. For example, proteinuria is often associated with diabetes and hypertension. However, clinicians should loo...
The Story Behind the Amyloidosis Speakers Bureau
Переглядів 779 місяців тому
The Story Behind the Amyloidosis Speakers Bureau
Expert Insights Into Amyloidosis: A Brief Clinical Overview
Переглядів 4,2 тис.9 місяців тому
Expert Insights Into Amyloidosis: A Brief Clinical Overview
Expert Insights Into Amyloidosis: Clinical Signs That Suggest Transthyretin Amyloidosis - Part II
Переглядів 1619 місяців тому
Expert Insights Into Amyloidosis: Clinical Signs That Suggest Transthyretin Amyloidosis - Part II
Expert Insights Into Amyloidosis: Cardiac Clues That Suggest Transthyretin Amyloidosis - Part I
Переглядів 3089 місяців тому
Expert Insights Into Amyloidosis: Cardiac Clues That Suggest Transthyretin Amyloidosis - Part I
Expert Insights Into Amyloidosis: Closing Diagnosis Gap of Cardiac Amyloidosis in African Americans
Переглядів 1439 місяців тому
Expert Insights Into Amyloidosis: Closing Diagnosis Gap of Cardiac Amyloidosis in African Americans
Expert Insights Into Amyloidosis: Orthopedic Manifestations in Amyloidosis
Переглядів 3389 місяців тому
Expert Insights Into Amyloidosis: Orthopedic Manifestations in Amyloidosis
Expert Insights Into Amyloidosis: Cardiac Amyloidosis - AL and ATTR are Two Different Conditions
Переглядів 8369 місяців тому
Expert Insights Into Amyloidosis: Cardiac Amyloidosis - AL and ATTR are Two Different Conditions
Humanizing Medical Education: Beyond Bullet Points
Переглядів 5710 місяців тому
Humanizing Medical Education: Beyond Bullet Points
Testing Carpal Tunnel for Amyloidosis: One Patient's View
Переглядів 26611 місяців тому
Testing Carpal Tunnel for Amyloidosis: One Patient's View
CLOSING THE MEDICAL EDUCATION GAP: The urgency to act is NOW
Переглядів 254Рік тому
CLOSING THE MEDICAL EDUCATION GAP: The urgency to act is NOW
Expert Insights Into Amyloidosis: Unraveling the Lineage - The Genetic Basis of Familial ATTR-CM
Переглядів 56Рік тому
Expert Insights Into Amyloidosis: Unraveling the Lineage - The Genetic Basis of Familial ATTR-CM
Expert Insights Into Amyloidosis: Building an Index of Suspicion for Cardiac Amyloidosis
Переглядів 119Рік тому
Expert Insights Into Amyloidosis: Building an Index of Suspicion for Cardiac Amyloidosis
Expert Insights Into Amyloidosis: Raising Awareness of Cardiac Amyloidosis
Переглядів 347Рік тому
Expert Insights Into Amyloidosis: Raising Awareness of Cardiac Amyloidosis
Expert Insights Into Amyloidosis: Ensuring Adequate Racial/Ethnic Representation in Clinical Trials
Переглядів 49Рік тому
Expert Insights Into Amyloidosis: Ensuring Adequate Racial/Ethnic Representation in Clinical Trials
Thoughts From A Patient: "Seeking a second opinion"
Переглядів 51Рік тому
Thoughts From A Patient: "Seeking a second opinion"
Why Patients Join the Amyloidosis Speakers Bureau (ASB)
Переглядів 116Рік тому
Why Patients Join the Amyloidosis Speakers Bureau (ASB)
Thoughts From A Patient: "Pearls of wisdom"
Переглядів 71Рік тому
Thoughts From A Patient: "Pearls of wisdom"
Expert Insights Into Amyloidosis: The Future for Patients with ATTR Cardiac Amyloidosis is Brighter
Переглядів 4,1 тис.Рік тому
Expert Insights Into Amyloidosis: The Future for Patients with ATTR Cardiac Amyloidosis is Brighter
Excellent presentation. Clear and concise. Ideal for those who want to know the difference early in their quest to find out what condition that they may have, as many symptoms described and attributed to one or the other, or both. Easy for those without a lot of medical knowledge in my opinion. Thank you.
Very insightful talk. Perfectly describes my Dad's initial presentation of amyloidosis with the big floaters in his eyes. He recently passed away of a hemorrhagic stroke that is presumed to be due to CNS involvement of his pathology. He had Val30Met variant.
Excellent information! 🌿 I was diagnosed with amyloidosis and felt overwhelmed. Planet Ayurveda's herbal supplements, particularly their Punarnava capsules, helped manage my symptoms effectively. My aunt also found relief with their natural remedies. Definitely recommend checking them out!
My brother died because people didn’t communicate correctly.
Very important for us to know. Thank you!!
My ex died about 2 years ago after being diagnosed too late. They put her in hospice and 5 days later she was dead. She had many things wrong over the years ,morbidly obese ,diabetes ,blood clots over the years. When I saw the death cert,the amyloid as cause of death shocked me.
Thank you for the work you do.
How long does this disease take to make a difference in one’s life? I have had some type of mysterious problem for over 50 years and no doctors could figure it out! But just recently I had carpal tunnel surgery done and a skin sample was taken and it was biopsy and this junk showed up! I kind of believe this is what I have had for such a long period of time. I have had all kinds of test since this biopsy was taken with no results showing problems other than that sample. My heart is ok and all the other organs seem to be ok also through blood draws and urinate test. Now here is the kicker I’m 79 years old and well I don’t feel as though I want to be a guinea pig for experimental use. So what to do? My health seems to be good and I keep quite active for my age Jon
Hi Jon, amyloidosis can indeed be found in the tissue from carpal tunnel release surgery. The next step would be to connect with an amyloidosis center for further testing to confirm amyloidosis, determine the type you may have, and what (if any) organs are involved. After that, an appropriate treatment program can be considered. Suggest you visit www.amyloidosissupport.org to find a center near you. Significant advances have been made in this area, so you won't be a guinea pig - but getting to an expert is important. Two other good resources for information are www.arci.org and www.amyloidosis.org All the best.
My cholesterol was unusually high too, I was put on a statin, that I felt was killing me, like an allergic reaction, interesting. I was just diagnosed about a month ago, I had a kidney biopsy because of oedema. I was diagnosed about 8 months after I started feeling terrible, so far I don’t have myeloma, 30% of people can have both…I also had a bone marrow biopsy. I’m starting treatment this month.
I fought with doctors since late 2016 over why I, at the time a 43 year old athletic male, was being hospitalized for not being able to breath in my sleep. My oxygen was going so low at night and anytime I tried to sleep or even nap, my body would wake me up to take a deep breath. I felt like I was losing my mind from losing so much proper sleep and I did not (and, still do not) have obstructive apnea. My EKG displayed what they called "benign LAFB" EKG heart readings. They fought with me to say that all I had was anxiety and I needed to take the SSRI's and sleep drugs that they were trying to prescribe to me. I was prescribed oxygen for 3 liters/min at night for my oxygen falling to 83 in the night during my many sleep studies, but they said it must be due to some form of anxiety that I must have. I refused their drugs because I knew that they were way off on this diagnosis of theirs. My symptoms got worse and worse until, finally, in May of 2021 and after so many doctors's office and emergency room visits, I finally got to Mayo Clinic, where I was diagnosed with idiopathic right sided heart failure with preserved ejection fraction. My left side was good at the time, but even Mayo could not explain as to why only my right side was thickening for no known reason. At this present point of my seemingly unending nightmare experience, my heart is on the decline, and my current cardiologist hasn't sought an answer for a thing for me and appears to only be waiting for my heart to go out; no aggressive searching for any answers to my odd and purely nightmarish situation that I am living whatsoever. Now that I have recently discovered this amyloid condition, I have made an appointment with my cardiologist a couple months ago and I will be finally having my office visit with my cardiologist in a couple weeks from this post. I will be pushing for him to emergency test me for Amyloidosis. I can see that Amyloidosis is a true emergency and I hope that he at least does this much right when I present him with this discover by beginning the process of aggressively and quickly pursuing the testing for Amyloidosis. I am dearly appreciative of this video. Thank you and all these doctors in this video from the bottom of my heart. I am not sure at this point if I have this condition, but I am almost positive that this is what I have.
I also felt worse after being given a statin. Could the high cholesterol in the body keep the amyloid fibers lower?
I still watch this great video on occasion, with a lot of emotion.
Dr. Nativi-Nicolau's screen mentions asking the patient about carpal tunnel and back surgeries. Are back surgeries a clue to an amyloidosis diagnosis?
Like carpal tunnel syndrome, spinal stenosis is also suspected of offering early clues to amyloidosis.
Thank you for this! I was just diagnosed with Al and httr. This put me at ease
Everything my husband went through with this nightmare i will never forget.I remember it was Superbowl Sunday 2015 and he woke up and told me he was going to die. He didnt get diagnosed till April 2015. He was diagnosed with AL Amyloidosis. In Oct 2025 he had a pacemaker defib put in. But his heart was to far gone. He passed away in Feb 2016 . What yall do for awareness for this monster disease is amazing. Thank you
Martha Q Lacy Mayo, Rochester MN
I was suffered from Amyloidosis for a long time. Amyloidosis is a major hair loss problem. I used various medicines but did not get relief from this problem. One day one of my friends told me about Planet Ayurveda and their products. They provide AmyloidosisCare Pack for Amyloidosis. I used this pack. It was really very effective. If you have this problem use this pack.
My transplant is just around the corner, very nervous
Amyloidosis, is the serious disease of heart, kidneys, liver or other organs. My friend suffered from this disease. He used various medicines but got no relief. Then he used the Amyloidosis Care Pack of Planet Ayurveda and got relief from Amyloidosis.
If you had no organ involvement how did they find your Amyloidosis?
This is such a beautiful tribute to those who have fought a battle and lost and to those who are fighting the battle. R.I.P. My love Patrick
Very thorough Mackenzie, thank you for sharing all of the highlights and lowlights of this awful disease. Best wishes in your adventure into Med School. I'm 44, learned I had Amy in my liver at 38 and they thought I was too young so I can't imagine their surprise to see you had it. My daughter is 22 and working toward med school herself and her biggest fear is all of this hard work and finding out she's inherited it from me. I'm happy to hear you are on the road to recovery and feeling better so you can concentrate on your studies and still sharing your experience with us along the way. I have no doubt you can and will be a very compassionate Dr when your day comes. 💓
Your story is very interesting and special. Congratulations for your courage and the great fight against the disease. I am happy that you have a complete remission and you are doing well. Good luck in your study on becoming a doctor. I am also an AL amyloidosis patient diagnosed in April 2011 at the age of 59, with one organ involved, the liver. My principal symptom was jaundice and it is rare. Like you, I had an ASCT in February 2012 after 8 months of chemo (velcade plus dex). I am in complete remission. My name is Gaétan Chevalier and I live in Québec city, Canada. Thank you very much for raising awareness.
Thanks for the vid. You’re awesome. We’ve been following and rooting for you!!! Glad to be on the channel.