The heart and soul of the Amyloidosis Speakers Bureau are our patient educators. They share their authentic journey of battling amyloidosis, from symptoms to diagnosis, treatment, and life today. Their stories provide an impactful education to medical students and residents, raising awareness of this disease. As a result, these future physicians will be better prepared to suspect amyloidosis, leading to earlier diagnosis, treatment and ultimately improving patient lives.
Slider
Closing the Medical Education Gap
Lack of awareness, a gap in medical education, is among the most critical and urgent challenges facing the amyloidosis community today. Raising awareness to accelerate diagnosis, coupled with available FDA-approved treatments, leads to a significant improvement in patient lives. The Amyloidosis Speakers Bureau (ASB) brings the patient voice to medical education, complementing traditional didactic and clinical studies. Together, this narrows the education gap and results in a more robust and durable education of medical trainees, thereby accelerating diagnosis and improving patient lives.
Please WATCH this powerful message from amyloidosis experts to medical educators.
Amyloidosis Speakers Bureau (ASB)
The content of medical education is appropriately clinically centered. The delivery of this content remains relatively unchanged over the decades – typically taught by medical professionals through lectures, PowerPoint presentations, and patient case studies. We posit that there is an essential missing component: the patient voice. During the didactic years, medical students rarely hear from patients about their symptoms, diagnostic journey, emotional management, support and resources, and relationship with the medical community. These insights can offer impactful and durable education that complements traditional didactics in developing future medical practitioners.
Why is this important? Lack of awareness in the healthcare field is among the most critical and urgent challenges facing the amyloidosis community today. Raising awareness to accelerate diagnosis, coupled with available FDA-approved treatments, leads to a significant improvement in patient lives.
At the Amyloidosis Speakers Bureau, two years ago we set out to understand whether our patient educators were making an impact following a presentation to U.S. medical students. Would their narratives elevate the students’ understanding of this rare disease and influence their attitudes and behavioral intent regarding patients?
In short, our study findings indicated “yes.” Click HERE to read the peer reviewed published study.
The paper finds that, in a study where medical students were randomly assigned to either listen to an amyloidosis patient’s story or to a control group, those who heard the patient’s diagnostic and treatment journey differed in attitudes and intent from those in the control group. Those who heard the patient’s story were significantly more likely to intend to improve their communication with patients, learn more about amyloidosis, and agree that listening to patients is a vital part of diagnosis.
With great appreciation we thank Dr. Adebanke Adebayo, Dr. Katherine Rowan, and Dr. Vaishali Sanchorawala for their important contribution to this paper. We would also like to thank the many ASB patient educators who contributed to this study and continue to give their time to raise awareness to the medical community through sharing their personal journeys. We could not have done this study without any of these wonderful individuals!
Int’l Symposium on Amyloidosis (ISA) – Heidelberg 2022
We are super proud to have presented the story about the Amyloidosis Speakers Bureau at last week’s International Symposium on Amyloidosis (ISA) in Heidelberg, Germany.
Ours was not the typical presentation at such a prestigious global medical conference, but our message “PATIENTS ARE POWERFUL EDUCATORS” was seemingly super well received. Afterwards we heard words such as “transformative” and “brilliant” … opening minds about the impact that patients can bring to raise awareness. Hopefully, there will be good actions to come from this! Meanwhile, we press on to educate U.S. medical students and residents.
THE PANEL INCLUDED (Thank you to Alexion Pharmaceuticals for sponsoring our panel):
THE PANEL INCLUDED (Thank you to Alexion Pharmaceuticals for sponsoring our panel):
– Professor JULIAN GILLMORE and Professor ASHUTOSH WECHALEKAR from the National Amyloidosis Centre, UCL – University College of London, UK
– Professor GIOVANNI PALLADINI, Director of the Amyloidosis Research and Treatment Center at the University Hospital San Matteo in Pavia, Italy
– DR. VAISHALI SANCHORAWALA, Director of Amyloidosis Center at Boston University
– DR. RODNEY FALK, Director of the Cardiac Amyloidosis Program at Brigham and Women’s Hospital (BWH)
– Professor GIOVANNI PALLADINI, Director of the Amyloidosis Research and Treatment Center at the University Hospital San Matteo in Pavia, Italy
– DR. VAISHALI SANCHORAWALA, Director of Amyloidosis Center at Boston University
– DR. RODNEY FALK, Director of the Cardiac Amyloidosis Program at Brigham and Women’s Hospital (BWH)
– DEBORAH BOEDICKER, Board Member at Mackenzie’s Mission and Operating Committee Member of the Amyloidosis Speakers Bureau
– KRISTEN HSU, Executive Director of Clinical Research at the Amyloidosis Research Consortium
We are proud of the work we collectively do at the ASB and the impact we are making. Now into our fourth academic year, we have given over 200 presentations to more than 9,600 medical students and residents!
– KRISTEN HSU, Executive Director of Clinical Research at the Amyloidosis Research Consortium
We are proud of the work we collectively do at the ASB and the impact we are making. Now into our fourth academic year, we have given over 200 presentations to more than 9,600 medical students and residents!
Our speakers, and their willingness to share their authentic story, are the cornerstone of this powerful educational initiative.
With endless appreciation for your support and engagement,
Deb Boedicker
ASB: 2021 Year-End Review
Our mission is to educate future doctors about amyloidosis, with the belief that heightened awareness will lead to earlier diagnosis and ultimately improve patient survivorship. We know that the level of medical school education about amyloidosis runs the gamut, from a small mention in textbooks to classroom discussions with medical professionals, although the bias is overwhelmingly towards the “minor mention.” In addition, you’ll read below about our exciting expansion into residency programs – those new physicians now practicing and diagnosing patients. As a result, we are confident our efforts will provide a valuable enriched exposure to this disease to augment the medical school curriculum and residency didactic programs.
EXECUTIVE SUMMARY
- Last year, we set our 2021 goal at 60 presentations, with hopes that the year would emerge from the 2020 pandemic onset. For the most part, it did. We gave 34 presentations in the Spring, and 27 presentations this Fall. Combined, these 61 presentations were to more than 2,400 medical students and physicians! Go us!
- Of the 61 presentations, 59 were virtual and 2 were in-person. Of note, both of the in-person were to our newly launched residency program outreach. Schools, with students returning to in-person in the Fall, remained largely closed to guests. Looking ahead we anticipate seeing a few more in-person, but virtual is likely here to remain in a big way for the foreseeable future.
- Our recent expansion into internal medicine residency programs (over 550 of them across the U.S.) has already resulted in 6 presentations on the calendar for 2021 and 2022. Our custom video specifically focused for this audience has been very well received and provides an excellent clinical educational complement to our patient stories.
- We average around 35-40 speakers, which allows for diversity in our speaker population’s disease state and flexibility in their availability. This has served us well. (more on that below)
- We are particularly delighted that our medical school student mailing list – those interested post-presentation in continuing to receive information about amyloidosis – continues to grow and is now around 350! Each month we email brief information about some aspect of amyloidosis, with the content pulled from experts and other trusted organizations. Our goal is to keep amyloidosis in their mind as they approach graduation and begin seeing patients.
- In October we held our first webinar, “Discover the Power of the Patient/Physician Collaboration” with guests Dr. Rodney Falk and hereditary ATTR patient Sean Riley. We ourselves were very pleased with the discussion and insights, although the attendance fell short of expectations for medical student turnout.
- With the help of one of our speakers Dr. Kathy Rowan, a professor in social science, we received approval from George Mason University’s IRB (Institutional Review Board) in August and launched a study to understand the impact and effectiveness of our educational offering to medical students. At present, we are in data collection mode and anticipate in 2022 we will transition to analysis of the data. If the conclusions are insightful, we intend to seek publication.
- Each Spring and Fall we reach out to medical school deans, updating them on our activities.
THE NUMBERS
- Our target universe is approximately 160 continental U.S.-based medical schools – both their curriculums and student interest groups, and over 580 internal medicine residency programs.
- We gave 61 presentations in 2021, and have 13 already booked for 2022.
- Since the ASB started in the Fall of 2019, we now total 153 presentations, to approximately 6,900 students and physicians. A complete list of schools and resident programs can be found below.
- Of the 2021 presentations, roughly 20% of the presentations were within the curriculum; 75% to student interest groups, and 5% to residency programs.
SPEAKERS
The cornerstone of our effort is our group of wonderful patient speakers, who passionately volunteer their time to give back and share their stories of life with amyloidosis.
Our speaker group is diversified by geography across the continental U.S., by amyloidosis type, by organ involvement, by gender and age. This is a rather deep bench, but we have found it both helpful and necessary. Helpful in that we can maximize attendance if we work around the preferred dates and times suggested by the schools. Helpful in that we can match specific disease states with audience focus (e.g., a cardiac amyloidosis patient speaker to a cardiology student interest group). Also, helpful in rotating speakers and types of disease at each school, since we are regularly returning to groups which have overlapping students. And necessary in that periodically, a speaker’s personal situation may change and they need to step back either temporarily, or permanently. We are delighted that our group is fairly stable and increasingly seasoned and experienced in sharing their stories. That said, we are fortunate to have a steady pipeline of new speaker interest, which we spend time screening, qualifying and training to bring online – only if needed (so it’s rare we add new speakers these days). At present, we feel this is an appropriate number of speakers for our current and anticipated growth.
Thanks to two of our speakers who have extensive experience, we offer in-depth guidance for new speakers, and current speakers wanting a ‘refresh’ in the development of their presentation outline and rehearsal training for their delivery. In addition, prior to most virtual presentations we rehearse and test the new speakers’ audio and video technology. For those partaking, it has been an appreciated additional level of support and we believe is translating to a higher quality offering.
ADVISORS
We are proud to have an impressive group of medical experts and influencers in the world of amyloidosis, some of whom are also patients, as advisors to support our initiative. Our advisors are active in our efforts and contribute their specialized expertise in a variety of ways, such as medical school introductions, grant requests, educational development, and patient speaker assessment/development. We are extremely grateful for their assistance and believe that, thanks to their contribution, the ASB will make an even bigger difference in the diagnoses of this disease. You can see our prestigious list of advisors on our website page www.mm713.org/speakers-bureau/
TESTIMONIALS – OUR TRUE REPORT CARD
Feedback from students and medical school professors has been extraordinarily positive. It reinforces to us that candid and authentic patient stories are a valuable complement to the medical school curriculum, strengthening the learning and deepening the durability for these future doctors about this disease. This is exactly why we do what we do. Here are just a few of the testimonials.
The opportunity for second year medical students to hear the story of a patient with amyloid is invaluable. The presentation addressed aspects of pathophysiology they are learning and the human side of medicine. This presentation format offered an excellent teaching opportunity to inform doctors-in-training about this serious disease. Our students gained insight into the patient’s journey through diagnosis, treatment and the challenges ahead. We all appreciated the patient’s generosity in sharing her experiences. Having patients teaching medical students about amyloidosis will have a lasting impact on our future doctors with increasing awareness of this disease and ultimately will help future patients. Theresa Kristopaitis, M.D., Professor, Assistant Dean for Curriculum Integration, Loyola University Stritch School of Medicine
Such a powerful presentation that I will carry with me throughout my whole career, no matter what specialty I go into! I not only learned the importance of keeping amyloidosis on my differential, but also the importance of really listening to your patients and working through the hard diagnoses together. Solana Archuleta, MD Candidate, University of Colorado School of Medicine
I had several students make comments after the conclusion of the presentation that it was the best, one even said ‘exceptional,’ presentations given at our school from a patient. The materials gave all of the students, including myself, a great introduction to some of the pertinent findings in patients with amyloidosis. Co-President of the Internal Medicine Interest Group, University of Arizona College of Medicine, Phoenix
Hearing Ed talking about his journey with Amyloidosis was an incredible experience that only further inspired me to want to be a better physician for my future patients. It is one thing to learn about a condition in the classroom, but hearing the real-world struggles with it from another human being provides a whole new perspective. Ed was open about his journey and shared his feelings during each step, giving us insight into what it is like to be a patient with Amyloidosis. I will take what I learned from this presentation and apply it in order to ensure that patients I see in the future do not have to deal with the same issues that Ed had to deal with. Gurkaran Singh, MD Candidate, University of Arizona College of Medicine, Tucson
Diseases such as amyloidosis are often managed by specialists, but it is important for primary care physicians to recognize these signs and direct these patients to these specialists. Increasing awareness of these diseases among all physicians will help patients reach an answer sooner and can have a significant impact on their lives. Yue Zhang, MD Candidate, Northwestern Feinberg School of Medicine
We are saddened that we lost our co-founder Charolotte Raymond earlier this year, losing her battle with AL amyloidosis. Charolotte was our true inspiration for the Amyloidosis Speakers Bureau, and we know her passion for educating future physicians will be our guiding light. To keep our patient-led focus, we were thrilled to have one of our speakers, Lane Abernathy, join our Operating Committee. Lane, an amyloidosis patient herself, brings wonderful energy, experience and passion to help manage our efforts. We feel thankful to have her with us.
An additional word about our growing list of passionate volunteers, the majority of whom are active speakers. They help our efforts across many aspects of our operations, from management, to speaker development, to research, and video production. Their dedication to our effort is a testament of their belief in what we are doing to educate areas of the medical community, and we thank them all.
We are pleased with all we have accomplished thus far, energized by the feedback, cognizant that we have much ahead, and hope we have made you proud. After all, we can’t do any of this without you! As always, we welcome any comments you may have.
Stay safe, happy holidays to you and your family, and all the best for a new 2022!
Mackenzie, Lane, and Deb
Operating Committee of the Amyloidosis Speakers Bureau, sponsored by Mackenzie’s Mission
Our initiative is being well received by medical schools across the country. Below is a list of schools we have presented to at least once a year, whether through their curriculum or interest groups. After that, is the growing list of internal medicine residency programs where we also have presented.
MEDICAL / D.O. SCHOOLS
- Albert Einstein College of Medicine
- Baylor College of Medicine
- California University of Science & Medicine, School of Medicine, San Bernardino
- Case Western Reserve School of Medicine
- Central Michigan University College of Medicine
- Chicago Medical School, Rosalind Franklin University of Medicine and Science
- Cleveland Clinic Lerner College of Medicine
- Columbia University Vagelos College of Physicians and Surgeons
- Drexel University College of Medicine
- Florida Atlantic University Charles E. Schmidt College of Medicine
- Florida International University Herbert Wertheim School of Medicine
- Florida State University College of Medicine
- Geisinger Commonwealth School of Medicine
- George Washington School of Medicine
- Icahn School of Medicine at Mount Sinai
- Lake Erie College of Osteopathic Medicine
- Lewis Katz School of Medicine at Temple University
- Loyola University Chicago Stritch School of Medicine
- Mayo Clinic Alix School of Medicine, Rochester
- Mayo Clinic Alix School of Medicine, Scottsdale
- Northeast Ohio Medical University College of Medicine
- Northwestern University Feinberg School of Medicine
- NYU Grossman School of Medicine
- Oakland University William Beaumont School of Medicine
- Quinnipiac University Frank H Netter MD School of Medicine
- Stanford University School of Medicine
- Touro College of Osteopathic Medicine in New York City
- Tufts University School of Medicine
- University of Arizona College of Medicine, Phoenix
- University of Arizona College of Medicine, Tucson
- University of California Irvine School of Medicine
- University of California San Francisco School of Medicine
- University of Central Florida College of Medicine
- University of Chicago Pritzker School of Medicine
- University of Cincinnati College of Medicine
- University of Colorado School of Medicine
- University of Connecticut School of Medicine
- University of Florida College of Medicine
- University of Hawaii, John A. Burns School of Medicine
- University of Illinois College of Medicine, Chicago
- University of Illinois College of Medicine, Peoria
- University of Illinois College of Medicine, Rockford
- University of Iowa Carver College of Medicine
- University of Kansas School of Medicine, Wichita
- University of Maryland School of Medicine
- University of Massachusetts Medical School
- University of Minnesota Medical School
- University of Missouri Kansas City School of Medicine
- University of Nevada Reno, School of Medicine
- University of Pittsburgh School of Medicine
- University of South Alabama College of Medicine
- University of South Carolina School of Medicine, Columbia
- University of Toledo College of Medicine
- UNLV School of Medicine
- Virginia Commonwealth University School of Medicine
- Wayne State University School of Medicine
- Wright State University Boonshoft School of Medicine
- Yale School of Medicine
RESIDENCY PROGRAMS
- Central Maine Medical Center
- Meharry Medical College Program
- Michigan State University Program, Sparrow Hospital
- St. Francis Medical Center Program, Jersey Shore University Medical Center
- Texas Institute for Graduate Medical Education and Research (TIGMER) Laredo Internal Medicine Residency Program
- Western Michigan University Homer Stryker M.D. School of Medicine
A Clinical & Patient Perspective of Wild-Type Amyloidosis
Wild-type ATTR is also referred to as ATTRwt. It is not caused by any known genetic mutations, such as in the case of hereditary forms of the disease (hATTR). This disease used to be called SSA or SCA, which stood for Senile Systemic Amyloidosis and Senile Cardiac Amyloidosis, respectively, which are now outdated terminologies. The disease is not known to be directly related to dementia, but it is related to aging.
Deposits of TTR amyloid can be found throughout the body, so it is a systemic amyloidosis disease. The most common place it is found is in the heart. Wild-type ATTR is also known to cause some cases of carpal tunnel syndrome, which can be the first (early) symptom. Recent data suggests that lumbar spine involvement as well as a rupture of the biceps tendon in the forearm can precede cardiac involvement by many years.
This is a disease that has traditionally been found mostly in men, originally reported in those aged 80 and over. As awareness of the disease increases, wild-type ATTR average age at diagnosis is 75. It is often overlooked as an amyloidosis disease because so many people experience heart problems in their later years.
As with hereditary forms of the disease (hATTR), wild-type ATTR causes problems due to the breaking apart, misfolding and deposition of amyloid protein fibrils in healthy tissue. “Wild-type” refers to this form of the disease because it is the natural form of this protein, without genetic mutation. These deposits can interfere with the heart’s normal function, by causing stiffness of the heart tissue, making it more difficult for the heart to fill, leading to heart rhythm problems and heart failure.
In this special video, hear world-renowned expert Dr. Mathew S. Maurer and his patient John Basdavanos presenting to a group of medical students. Dr. Maurer provides a brief overview of ATTRwt, while John provides the patient perspective. Together, these insights offer a compelling story about battling a life threatening disease.
Charolotte Raymond
Celebrating a Warrior, Partner, and Friend – Charolotte Raymond
Our first communication with Charolotte was Fall 2018. Since 2017, after giving a presentation to the medical students of Dr. Gordon Huggins at Tufts University School of Medicine, she developed this vision for a speakers bureau and was looking for a group to partner with that could bring the infrastructure and financial support to life. After knocking on a few doors, Muriel Finkel of the Amyloidosis Support Groups suggested she knock on ours – Mackenzie’s Mission.
At the same time, Mackenzie’s Mission, founded a year earlier, was still searching for that right “raising awareness” initiative. At the onset we went for public social medial posts and website blogs, but we quickly knew that random and public outreach wouldn’t been effective on our small scale. A public onslaught for awareness required a massive media platform and lots of money, or a lucky viral campaign like ALS’ Ice Bucket Challenge. Neither felt attainable. Mackenzie wanted an initiative that was targeted and focused, and aimed at a segment that could make a difference.
Charolotte’s first email to us in August 2018 began, “I have been building a team of speakers to go to medical schools and talk about their experiences with Amyloidosis. It is an idea I wanted to discuss with you. I like that you are not sitting back, that you are truly proactive!! It is people like you that are going to be changing the face of this illness!”
Next was a call where Charolotte described her vision. Mackenzie responded with the most enthusiastic, “YES, we have to do this.” For her, it was the moment of clarity on her dreams to raise awareness. The concept was simple – focus on the pipeline of future doctors, educating them through patient stories. Brilliant. It brought a complement to the often scant discussion of amyloidosis in curriculums, an emotional element to see, hear and better understand the patient perspective, and opportunity reach a multitude of specialties before they declare their path, all in one place.
In the ensuing months in between her treatments, we had extensive conversations — about everything and anything. Ranging from big concepts like operating structure and roles/responsibilities to execution details like priorities, funding and resources. We were aligned on some thoughts, and unsure about others. We knew Mackenzie’s Mission could bring the legal platform, and operationally had the ability to bring this to life. There was one growing reality emerging through all of this – we were 100% aligned on the vision and simply enjoyed each other with positivity, laughter, and a rapidly developing respect for everyone’s views and opinions. Our triumvirate was diverse by disease, age, and experience. Together, it pointed to a powerful collaboration of effectiveness and efficiency, while having fun along the way.
By January, 2019 we felt we had the framework for Charolotte’s initial vision, shaped and re-shaped to execute. Thus on February 1, 2019, the Amyloidosis Speakers Bureau was launched. We spent the next handful of months laying the foundation – website, materials, and recruiting a wonderful group of speakers. In addition, we established a group of advisors — renown amyloidosis experts and key community leaders — that brought credibility, support, and respect for our initiative.
Our first school year – Fall 2019 to Spring 2020 we held 44 presentations. Interrupted by the global COVID pandemic, we re-tooled from being in-person to virtual. Our offering was now broader, more robust and flexible. We learned so much and were always willing to pivot, a mindset which had us always looking forward, listening for feedback, and never forgetting our focused mission.
Today, in the Spring of 2021 and a few months away from concluding our second school year, have booked 61 presentations with a pipeline of a half dozen more to schedule. We have about 40 speakers, diverse by disease type, experience, and organ involvement. They are the centerpiece of our initiative and we thank them dearly for being a part of the ASB. We have presented to over 5,000 medical students, and information about amyloidosis has reached over 30,000 medical students — all in just our first two years.
As Charolotte’s health ebbed and flowed, we saw her fierce love of life and willingness to battle back this disease. She never gave up and never wavered in her happiness seeing her vision make a difference in the amyloidosis community. Thanks to our Zoom world, she often was able to join school presentations and see the fruits of our labor in action. We know it brought her great pride and joy. She is survived by her beloved husband Robert N. Raymond of Delray Beach, Florida; daughters Kristen Weatherbee Smith of Delray Beach, Florida; Sherry and husband Robert Ortiz of Rochester; sons Eric and wife Kathleen of Rochester, Roderick of Somersworth; grandchildren Sean, Melissa, Kaylah, Katelyn, Lettie, Brennan, Zoe, Isabella, Alexander, great grandchildren Rylee, Finley and many extended family, and countless special friends.
The Amyloidosis Speakers Bureau will forever be a lasting legacy that always remembers Charolotte.
xoxo Charolotte. We love you, Mackenzie and Deb
ASB: 2020 Year-End Review
What a year it has been for everyone! Year-end 2020 brings us nearly two years since launch, and includes one and a half school years (or three semesters) of medical school. During that time we have established our mission, pivoted from in-person to virtual thanks to COVID-19, achieved 92% of our presentation goal for 2020, and are excited for 2021!
Our mission is to educate future doctors about amyloidosis, with the belief that heightened awareness will lead to earlier diagnosis and ultimately improve patient survivorship. We know that the level of medical school education about amyloidosis runs the gamut, from a small mention in textbooks to classroom discussions with medical professionals, although the bias is overwhelmingly towards the “minor mention.” As a result, we are confident our efforts will provide students with a valuable enriched exposure to this disease to augment the medical school curriculum.
EXECUTIVE SUMMARY
- Last year, we set our 2020 goal at 60 presentations, not knowing what was ahead. We gave 22 presentations in the Spring, and 33 presentations this Fall. So while we didn’t quite reach our goal, we are super proud that we did achieve 92% of our goal! Go us!
- We are thrilled that our activities are expanding – not only are we returning to medical schools we presented to last year, but we are adding new schools to the roster. A long way to go, but still positive direction. A full list can be found at the end of this update.
- Our agility in shifting last Spring to a virtual platform served us well. This rapid shift minimized the impact to our operations and, as a result, we were suspended for only a few months. By April, operations had resumed on a minimal basis. By August, operations were back to full swing, with everything being virtual since then.
- We average around 45 speakers, which allows for diversity in our speaker population’s disease state and flexibility in their availability. This has served us well.
- Our additional resources to develop speakers, their presentation styles, their stories, and their virtual audio/video capabilities has been well-received and we believe is translating to a higher quality offering.
- We are particularly delighted that our medical school student mailing list – those interested post-presentation in continuing to receive information about amyloidosis – keeps growing and we will be at 100 in the near future! Content is pulled from experts and other trusted organizations with the intention to offer brief insights into the disease.
- This year, with the help of one of our speakers who is a professor/Ph.D. in social science, we will be investigating how we can better ascertain and improve our speaker/ASB effectiveness in the eyes of the medical students.
- Each Spring and Fall we reach out to medical school deans, updating them on our activities.
THE 2020 NUMBERS
- We reached out to nearly all 160 continental U.S.-based medical schools and student interest groups, met with varying degrees of interest (or no response and/or no interest in some cases).
- We made 55 presentations in 2020, and have 10 already booked for Spring 2021. Since the ASB started, we now have 89 presentations logged. A complete list of schools we have presented to since we began can be found at the end of this email.
- Roughly 20% of the presentations are within the curriculum; 80% are to student interest groups. Identifying the appropriate professor(s) and establishing a dialogue continues to be a big challenge.
- Our educational materials, per the organizers, reached over 16,400 medical students, pushing us over 25,000 since we began.
SPEAKERS
The cornerstone of our effort is our group of wonderful patient speakers, who passionately volunteer their time to give back and share their stories of life with amyloidosis.
On average, we have around 45 active speakers, diversified by geography across the continental U.S., by amyloidosis type, by organ involvement, by gender and age. This is a rather deep bench, but we have found it both helpful and necessary. Helpful in that we can maximize attendance if we work around the preferred dates and times suggested by the schools. Helpful in that we can match specific disease states with audience focus (e.g., a cardiac amyloidosis patient speaker to a cardiology student interest group). Necessary in that periodically, a speaker’s personal situation may change and they need to step back either temporarily, or permanently. We are fortunate to have a steady pipeline of new speaker interest, which we spend time screening, qualifying and training. At present, we feel this is an appropriate number of speakers for our current and anticipated growth.
One area we have added resources to is training and presentation development for our speakers. Thanks to one of our speaker volunteers who has extensive experience, we offer in-depth guidance for new speakers in the development of their presentation outline and rehearsal training for their delivery. In addition, prior to every virtual presentation we rehearse and test the speakers’ audio and video technology. For those partaking, it has been an appreciated additional level of support and we believe is translating to a higher quality offering.
We are saddened that one of our speakers, Mark Stinehour, succumbed to this disease at the age of 56. He was passionate about giving back and leaving a lasting legacy to make a difference for those to come. Our hearts and prayers go out to Mark’s family.
ADVISORS
We are proud to have an impressive group of medical experts and influencers in the world of amyloidosis, some of whom are also patients, as advisors to support our initiative. Our advisors are active in our efforts and contribute their specialized expertise in a variety of ways, such as medical school introductions, grant requests, educational development, and patient speaker assessment/development. We are extremely grateful for their assistance and believe that, thanks to their contribution, the ASB will make an even bigger difference in the diagnoses of this disease. You can see our prestigious list of advisors on our website page www.mm713.org/speakers-bureau/
We are sad to share that one of our advisors, Dr. Janice Wiesman, passed away from COVID-19. Janice was an ardent and active supporter of our efforts and passionate about the world in which she lived. Our hearts and prayers go out to Janice’s family.
TESTIMONIALS – OUR TRUE REPORT CARD
Feedback from students and medical school professors has been extraordinarily positive. It reinforces to us that candid and authentic patient stories are a valuable complement to the medical school curriculum, strengthening the learning and deepening the durability for these future doctors about this disease. This is exactly why we do what we do. Here are just a few of the testimonials from this year.
The opportunity for second year medical students to hear the story of a patient with amyloid is invaluable. The presentation addressed aspects of pathophysiology they are learning and the human side of medicine. This presentation format offered an excellent teaching opportunity to inform doctors-in-training about this serious disease. Our students gained insight into the patient’s journey through diagnosis, treatment and the challenges ahead. We all appreciated the patient’s generosity in sharing her experiences. Having patients teaching medical students about amyloidosis will have a lasting impact on our future doctors with increasing awareness of this disease and ultimately will help future patients. Theresa Kristopaitis, M.D., Professor, Assistant Dean for Curriculum Integration, Loyola University Stritch School of Medicine
Such a powerful presentation that I will carry with me throughout my whole career, no matter what specialty I go into! I not only learned the importance of keeping amyloidosis on my differential, but also the importance of really listening to your patients and working through the hard diagnoses together. Solana Archuleta, MD Candidate, University of Colorado School of Medicine
I had several students make comments after the conclusion of the presentation that it was the best, one even said ‘exceptional,’ presentations given at our school from a patient. The materials gave all of the students, including myself, a great introduction to some of the pertinent findings in patients with amyloidosis. Co-President of the Internal Medicine Interest Group, University of Arizona College of Medicine, Phoenix
Hearing Ed talking about his journey with Amyloidosis was an incredible experience that only further inspired me to want to be a better physician for my future patients. It is one thing to learn about a condition in the classroom, but hearing the real-world struggles with it from another human being provides a whole new perspective. Ed was open about his journey and shared his feelings during each step, giving us insight into what it is like to be a patient with Amyloidosis. I will take what I learned from this presentation and apply it in order to ensure that patients I see in the future do not have to deal with the same issues that Ed had to deal with. Gurkaran Singh, MD Candidate, University of Arizona College of Medicine, Tucson
Diseases such as amyloidosis are often managed by specialists, but it is important for primary care physicians to recognize these signs and direct these patients to these specialists. Increasing awareness of these diseases among all physicians will help patients reach an answer sooner and can have a significant impact on their lives. Yue Zhang, MD Candidate, Northwestern Feinberg School of Medicine
Looking ahead to 2021 we again will target 60 presentations, and seek to expand the list of schools we present to. We are pleased with all we have accomplished thus far, energized by the feedback, cognizant that we have much ahead, and hope we have made you proud. As always, we welcome any comments you may have.
Stay safe, happy holidays, and all the best for a new 2021!
Mackenzie, Charolotte, and Deb
Operating Committee of the Amyloidosis Speakers Bureau, sponsored by Mackenzie’s Mission
————————–
Since inception in 2019, the Amyloidosis Speakers Bureau has presented to medical students of the following medical schools.
California University of Science & Medicine, School of Medicine, San Bernardino
Central Michigan University College of Medicine
Chicago Medical School, Rosalind Franklin University of Medicine and Science
Cleveland Clinic Lerner College of Medicine
Columbia University Vagelos College of Physicians and Surgeons
Drexel University College of Medicine
Florida Atlantic University Charles E. Schmidt College of Medicine
Florida International University Herbert Wertheim School of Medicine
Florida State University College of Medicine
Geisinger Commonwealth School of Medicine
George Washington School of Medicine
Icahn School of Medicine at Mt. Sinai
Lewis Katz School of Medicine at Temple University
Loyola University Chicago Stritch School of Medicine
Mayo Clinic Alix School of Medicine, Rochester
Mayo Clinic Alix School of Medicine, Scottsdale
Northeast Ohio Medical University College of Medicine
Northwestern University Feinberg School of Medicine
NYU Grossman School of Medicine
Oakland University William Beaumont School of Medicine
Quinnipiac University Frank H Netter MD School of Medicine
Stanford University School of Medicine
Tufts University School of Medicine
University of Arizona College of Medicine, Phoenix
University of Arizona College of Medicine, Tucson
University of Chicago Pritzker School of Medicine
University of Colorado School of Medicine
University of Connecticut School of Medicine
University of Florida College of Medicine
University of Illinois College of Medicine, Chicago
University of Illinois College of Medicine, Peoria
University of Illinois College of Medicine, Rockford
University of Iowa Carver College of Medicine
University of Kansas School of Medicine, Wichita
University of Maryland School of Medicine
University of Massachusetts Medical School
University of Minnesota Medical School
University of Missouri Kansas City School of Medicine
University of Nevada Reno, School of Medicine
University of Pittsburgh School of Medicine
University of South Alabama College of Medicine
University of South Carolina School of Medicine, Columbia
University of Toledo College of Medicine
UNLV School of Medicine
Virginia Commonwealth University School of Medicine
Wayne State University School of Medicine
Wright State University Boonshoft School of Medicine
Yale School of Medicine
Adapting During COVID-19
While our amyloidosis patient presentations have always been in-person, whether in class or over lunch, during this unusual time surrounding the COVID-19 pandemic we are offering two excellent virtual alternatives, each accompanied by a presentation by one of our advisors. These virtual packages have already been shared with hundreds of medical students across the country and have been well received.
1a) Live webinar. Hosted by the medical school on their platform, our patient speaker provides a live presentation of their journey with this disease, from symptoms through diagnosis and treatment, and life today, followed by real-time Q&A. Typically one hour in length, we are very flexible and work with the school’s desired date and time.
OR
1b) Pre-taped patient video presentation. Jessica, one of our patient speakers, shares her journey with cardiac AL amyloidosis with medical students at the University of Colorado School of Medicine. She takes the audience through her early symptoms, diagnosis, treatment, and her “new normal” life today, offering her perspective as a patient with a rare disease. Her emotional and compelling story is about 30 minutes long, followed by 10 minutes of Q&A from the students.
PLUS
2) Clinical PDF on Diagnosing Amyloidosis. An excellent powerpoint presentation “Diagnosing Amyloidosis: From Cardiology to Neurology” by Dr. J. Mark Sloan from Boston University’s Amyloidosis Center, including patient and pathology pictures, and clinical diagnostic information.
We believe, and feedback confirms, these virtual packages are a compelling alternative to in-person that advances students’ knowledge of amyloidosis while sharing valuable insights from both the patient and clinical perspectives. These virtual packages can be customized to focus on other types of amyloidosis, organ involvement, and expert medical presentation topics to meet specific audience interests.
If interested in learning more, please contact us at asb.mm713@gmail.com.
ASB: 2020 Spring Update
During this global pandemic, our hearts, prayers, and gratitude are with everyone to stay safe, particularly those on the front line, first-responders, and essential workers. These are unusual times, and we see all of you as heroes amongst us. Thank you.
At the Amyloidosis Speakers Bureau (ASB) we have spent a good deal of time reacting, assessing, and pivoting to a new normal during the pandemic. Here are the highlights for Spring 2020.
EXECUTIVE SUMMARY
February 1st was our one year anniversary since launch. We are proud of all we have accomplished in such a short period of time, and are deeply committed to the long haul. Our operational infrastructure is in place and can devote the majority of our time to school outreach, presentation arrangements and speaker management/support.
The year 2020 got off to a fast start, beginning as early as January 9. We had a steady flow of presentations through end-February, and then COVID-19 hit and quickly brought the world to its knees. Everyone has been affected, and we are no different. Presentations, whether virtual or in-person, have all but dried up for now, and we anticipate a burst of activity once normalcy returns.
In response to the crisis, we rolled out a virtual presentation package as an alternative to in-person presentations. The heart of our virtual presentation package is a full-length patient presentation video. Accompanying the video is a powerpoint presentation from our educational library on diagnosing amyloidosis, authored by one of our respected amyloidosis expert advisors. Our agility in being able to quickly assemble a package enabled us to provide needed online content for schools during this time, accomplish our goal of educating students, and allow our speakers to still make an impact. Early feedback indicates our virtual presentation package is well received.
Our goal for 2020 is to do 60 presentations. With only 19 thus far (9 in-person and 10 virtual), and all activity has gone dormant for an undetermined amount of time, it is hard to say where we will end the year.
We have added in-depth guidance for new speakers in the development of their presentation outline and rehearsal training for their delivery. This helps speakers gain more confidence and skill development, and strengthen the quality of our presentations for the audience.
In May we will be doing our next mailing to the medical school deans, updating them on our new virtual presentation offering and what schools we have been to. The last mailing was October, 2019.
We have launched a bi-monthly/quarterly mailing to medical students interested in receiving more information on amyloidosis. Content is pulled from experts and other trusted organizations with the intention to offer brief insights into the disease from the medical perspective. While the list is small and growing slowly, these are students that truly want to know more, so we are delighted to keep this disease front of mind for them.
Since inception, the ASB has conducted 41 in-person and virtual presentations, with our educational materials reaching over 9,650 medical students!
COVID-19
All of our presentations since March were cancelled, as the schools moved to online teaching and ceased in-person gatherings. All have indicated they will be happy to put us back on the calendar once normalcy returns, but of course, none of us know when that will be. Below we highlight our actions and a few things we have learned along the way.
– Acknowledged that this was indeed a crisis with momentum. We saw this as a fast-moving global health crisis first, and a shift in ‘way of working’ second.
– Prioritized our attention. Our focus was our patient speakers, developing an alternative to in-person, and the schools where we had presentations on the calendar. At a later date we would communicate with advisors, key donors and grantors, and the rest of the schools.
– Communicate, communicate and communicate. We reached out to speakers to share our concern of the situation and intention to never put them at risk. In addition, we offered to reimburse them for any outstanding expenses incurred, even for cancelled presentations, so as to not have any negative financial impact.
– Found a new ‘way of working,’ and fast. We weren’t sure what the schools’ preference would be for an in-person alternative, so we came up with two that were based on resources readily available: a pre-recorded patient speaker presentation and a live webinar (we would find those speakers with this kind of technology experience already). We also selected one powerpoint presentation from our educational library and offered that as an additional element – one that specifically focused on diagnosing all major types of amyloidosis.
– Was nimble and willing to adjust. Every school where we had a presentation scheduled switched to online learning, and every one of them chose the pre-recorded patient speaker presentation + powerpoint. Two schools with further out dates are considering the live webinar.
In the end, schools were happy as we could quickly provide easy-to-implement online content. We were happy as education about the disease was still happening. Our speakers were happy as they remained safe, yet knew they were still making a difference. Win-win-win. When we come out of this we will revert to in-person presentations, which we believe are the most powerful, but we will more aggressively build our patient speaker video library, know/train selected speakers on video conferencing for live presentations, and keep current our expert educational library, as we have learned these are valuable building blocks for alternatives that we can tap into with ease for different situations.
THE NUMBERS
- We have had 19 presentations thus far in 2020. Combined with 22 in the Fall, that brings our 2019-2020 school year presentations up to 41. Here is a representative list of names.
- Central Michigan University College of Medicine
- Cleveland Clinic Lerner College of Medicine
- Columbia University Vagelos College of Physicians and Surgeons
- Florida State University College of Medicine
- Icahn School of Medicine at Mt. Sinai
- Loyola University Chicago Stritch School of Medicine
- Mayo Clinic Alix School of Medicine, Rochester
- Mayo Clinic Alix School of Medicine, Scottsdale
- Northwestern University Feinberg School of Medicine
- NYU Grossman School of Medicine
- Quinnipiac University Frank H Netter MD School of Medicine
- Stanford University School of Medicine
- Tufts University School of Medicine
- University of Arizona College of Medicine, Phoenix
- University of Arizona College of Medicine, Tucson
- University of Colorado School of Medicine
- University of Connecticut School of Medicine
- University of Florida College of Medicine
- University of Illinois College of Medicine, Chicago
- University of Illinois College of Medicine, Peoria
- University of Illinois College of Medicine, Rockford
- University of Iowa Carver School of Medicine
- University of Kansas School of Medicine, Wichita
- University of Minnesota Medical School
- University of Toledo School of Medicine
- UNLV School of Medicine
- Virginia Commonwealth University School of Medicine
- Wayne State University School of Medicine
- Wright State University Boonshoft School of Medicine
- Approximately ⅓ of the presentations are within a course curriculum class, with the remainder to student interest groups.
- Per the organizers, the outreach in 2020 for our presentations went to over 5,400 students, bringing the school year total to over 9,650 students receiving our information.
- An additional 7 schools have expressed an intention to have a speaker present; however, at this time we anticipate that they will either accept our virtual presentation offering or defer an in-person presentation until the 2020-2021 school year.
- Our goal for 2019 was to do 15 presentations; that was accomplished.
- Our goal for 2020 is to do 60 presentations. With only 19 thus far, and activity gone dormant for an undetermined amount of time, it is hard to say if we will achieve our goal. We hope so.
- Our universe of U.S. medical schools and student interest groups totals around 230, and where we can find contact information, we have reached out to 100% of the groups. We have an ongoing outreach and, with each push, we increase our connections.
- Overall, we have connected with 60% of these groups; here’s how it then breaks down.
- 35% have presentations made, or are in the queue
- 11% have interest and are considering
- 25% have passed our information on
- 3% have deferred until next year
- 9% have indicated their curriculum is full, so no interest
- 17% have said they have no interest
- Overall, we have connected with 60% of these groups; here’s how it then breaks down.
SPEAKERS
The cornerstone of our effort is our group of wonderful patient speakers, who passionately volunteer their time to give back and share their stories of life with amyloidosis.
On average, we have between 40 and 50 active speakers. Periodically, a speaker’s health may change and they may step back either temporarily, or permanently, depending on their situation. To counter this, we are fortunate to have a steady pipeline of new speaker interest, which we spend time screening, qualifying and training. At present, we feel this is an appropriate number of speakers for our current and anticipated growth. We have a diversified breakdown of speakers — by geography across the continental U.S., by amyloidosis type, by organ involvement, by gender and age. This enables us to match speakers with audiences, if and when appropriate.
One area we have added resources to is training and presentation development for our speakers. Thanks to one of our speaker volunteers who has extensive experience, we now offer in-depth guidance for new speakers in the development of their presentation outline and rehearsal training for their delivery. For those partaking, it has been an appreciated additional level of support.
ADVISORS
We are proud to have an impressive group of medical experts and influencers in the world of amyloidosis, some of whom are also patients, as advisors to support our initiative. Our advisors are active in our efforts and contribute their specialized expertise in a variety of ways, such as medical school introductions, grant requests, educational development, and patient speaker assessment/development. We are extremely grateful for their assistance and believe that, thanks to their contribution, the ASB will make an even bigger difference in the diagnoses of this disease.
Kevin Anderson, M.D.
Kelsey Barrell, M.D.
John L. Berk, M.D.
Raymond L. Comenzo, M.D.
Angela Dispenzieri, M.D.
Rodney H. Falk, M.D.
Muriel Finkel
Rafael Fonseca, M.D.
Morie A. Gertz, M.D.
Martha Grogan, M.D.
James E. Hoffman, M.D.
Craig C. Hofmeister, M.D., MPH
Gordon S. Huggins, M.D.
Scott D. Jerome, D.O.
Taxiarchis Kourelis, M.D.
Tibor Kovacsovics, M.D.
Jane E. Kramer, M.D.
Heather J. Landau, M.D.
Suzanne Lentzsch, M.D., Ph.D.
Nelson Leung, M.D.
Edward N. Libby, M.D.
Michaela Liedtke, M.D.
Isabelle Lousada
Mathew S. Maurer, M.D.
Jose Nativi-Nicolau, M.D.
Mary O’Donnell
Maria M. Picken, M.D., Ph.D.
Marina Ramirez-Alvarado, Ph.D.
Cara Rosenbaum, M.D.
Michael Alan Rosenzweig, M.D., M.S.
Frederick L. Ruberg, M.D.
Vaishali Sanchorawala, M.D.
Brett W. Sperry, M.D.
Stephen B. Strum, M.D.
Janice F. Wiesman, M.D., FAAN
Jeffrey Zonder, M.D.
STUDENT TESTIMONIALS – OUR TRUE REPORT CARD
Feedback from students and medical school organizers has been extraordinarily positive. It reinforces to us that the patient stories are a valuable complement to the medical school curriculum, strengthening the learning and deepening the durability for these future doctors about this disease. This is exactly why we do what we do. Here are some of their words from Spring 2020.
This was wonderful! Thank you for your time. It is very helpful to hear about how this sometimes esoteric disease presents from an individual patient’s perspective. It helped to put a face to the confusing disease we read only briefly about in our medical textbooks. Diana Lopez, MD Candidate, Cleveland Clinic Lerner College of Medicine
This session is a great reminder of why I chose to be a doctor. Seeing the patient’s struggles gave us a new perspective on a disease that we see throughout the year. Miranda Rose Ricart, MD Candidate, Florida International University School of Medicine
Such a powerful presentation that I will carry with me throughout my whole career, no matter what specialty I go into! I not only learned the importance of keeping amyloidosis on my differential, but also the importance of really listening to your patients and working through the hard diagnoses together. Solana Archuleta, MD Candidate, University of Colorado School of Medicine
I had several students make comments after the conclusion of the presentation that it was the best, one even said ‘exceptional,’ presentation given at our school from a patient. The materials gave all of the students, including myself, a great introduction to some of the pertinent findings in patients with amyloidosis. Co-President of the Internal Medicine Interest Group, University of Arizona College of Medicine, Phoenix
It was great to hear a patient’s perspective to condense the knowledge we learn into a real-life memory. It was also great just to meet someone who clearly had a passion for life. Ghalib Shaikh, MD Candidate, University of Connecticut School of Medicine
Hearing Ed talking about his journey with Amyloidosis was an incredible experience that only further inspired me to want to be a better physician for my future patients. It is one thing to learn about a condition in the classroom, but hearing the real-world struggles with it from another human being provides a whole new perspective. Ed was open about his journey and shared his feelings during each step, giving us insight into what it is like to be a patient with Amyloidosis. I will take what I learned from this presentation and apply it in order to ensure that patients I see in the future do not have to deal with the same issues that Ed had to deal with. Gurkaran Singh, MD Candidate, University of Arizona College of Medicine, Tucson
Diseases such as amyloidosis are often managed by specialists, but it is important for primary care physicians to recognize these signs and direct these patients to these specialists. Increasing awareness of these diseases among all physicians will help patients reach an answer sooner and can have a significant impact on their lives. Yue Zhang, MD Candidate, Northwestern Feinberg School of Medicine
We are energized from all we have accomplished thus far, know we have much ahead, and hope we have made our amyloidosis community proud.
Stay safe and take care,
Mackenzie, Charolotte, and Deb
Operating Committee of the Amyloidosis Speakers Bureau, sponsored by Mackenzie’s Mission
For more information, visit www.mm713.org/speakers-bureau/
