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Over 10,000 medical students and residents!!

Today, with our 215th presentation, we surpassed a huge milestone — presenting to 10,000 medical students and residents!

What a great accomplishment for all of us, and to reach this level in just over three years! We are so proud of what we have accomplished, and thank our speakers, advisors, and supporters for their contributions. Without question, we could not have done it without them!

Each of these physicians, and future physicians, will go on to see hundreds, if not thousands, of patients during their career — so there is an astounding multiplier impact! We know that among those 10,000 attendees there were many who will never forget their patient speaker who shared their journey through symptoms, diagnosis, and treatment. We also know there will be future amyloidosis diagnoses among this group; perhaps diagnoses that are made sooner than had they not attended an ASB presentation? We believe there will be.

Until we are no longer needed, there remains much work to do, and we are thrilled to help raise awareness to the healthcare community.

Have a great day!

Mackenzie, Lane and Deb

Operating Committee Members

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):
– 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)
– 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!
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

 

THE POWER OF THE PATIENT/PHYSICIAN COLLABORATION

In this unique webinar, you will hear Dr. Rodney H. Falk and his patient Sean Riley discuss the importance of patient/physician collaboration in diagnosis, using Sean’s personal journey to illustrate the challenges of diagnosing hereditary amyloidosis, a life-threatening rare disease that hides in plain sight.

Hear how listening, observing, and questioning are critical to getting to a diagnosis, along with the recommendation for providers to always bring an elevated suspicion and curiosity to find answers.

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.

 

ASB: 2021 Mid-Year Review

At the Amyloidosis Speakers Bureau (ASB), the first half of this year was a continuation of 2020. Our re-positioning last year with a broader platform and adding in virtual offerings set us up well for 2021. Below we share highlights from the first half of the year. Enjoy!

EXECUTIVE SUMMARY

  • The first half of 2021 we gave 34 presentations, bringing our second school year of operation to a whopping 67 presentations to over 2,600 medical students. 
  • Since inception, the ASB has now made 114 presentations to over 5,600 medical students. Our materials have reached over 33,000 students. YAY!
  • We are thrilled that our activities continue to expand – not only are we returning to many medical schools we presented to last year, but we continue to add new schools to the roster. A complete list of schools we have presented to can be found at the end.
  • Our outreach now includes DO schools, and this Spring we presented to the largest in the U.S. — Lake Erie College of Osteopathic Medicine.
  • Based on feedback from a handful of course directors we have worked with, we have updated our message to medical school curriculum course directors in a way that conveys flexibility to work within their system, adaptability to match a speaker’s journey to their course topic, and transparency to screen speakers in advance. While still early, we are confident this will gain more attention.
  • Looking ahead as we emerge from the pandemic, we do anticipate a return to some in-person presentations starting in the Fall.  Virtual presentations are here to stay, and adding back in in-person will give us flexibility to meet school preferences. 
  • We average between 30-40 speakers, which allows for diversity in our speaker population’s disease type and organ involvement, and flexibility in their availability. This has served us well and proved valuable as we offer more customized presentations to schools. Even as we work hard to increase the number of presentations, we expect our current roster will accommodate our growth.
  • We are particularly delighted that our medical school student mailing list – students specifically interested in receiving ongoing information about amyloidosis – keeps growing (over 260!). Content is pulled from experts and other trusted organizations with the intention to offer ongoing brief insights into the disease.
  • This year, with the help of one of our patient speakers who is a professor/Ph.D. in social science, we are investigating how we can better assess and improve our speaker/ASB effectiveness and durability of our impact. Shortly, we will be analyzing the first six months of preliminary data to see what initial insights can be gleaned.
  • In May, we emailed medical school deans with our semi-annual update on our activities. We know some deans forward our update to course directors and have responded positively regarding our mission.
  • Two operational notes:
    • As you know, we lost our co-Operating Committee colleague Charolotte Raymond to this disease earlier this year. We believe it important to continue to be a patient-led organization, so we have proudly added Lane Abernathy to our Operating Committee. Lane began as a patient speaker with the ASB back in 2019, and expanded her involvement in early 2020 to help us deepen our support for our speakers and develop their presentations. She has been a wonderful supporter of our efforts and we appreciate all she does for the ASB.
    • In addition, four of our patient speakers have long voiced their interest in getting more involved, so we have integrated them into our efforts. 
      • Elizabeth Negrelli is working with Lane to support our speakers.
      • Sean Riley helps run Zoom presentations, as well as contribute writings to ASB Briefs, our medical school mailing series.
      • Dr. Kathy Rowan is working with us to better assess the impact our speaker presentations have on our medical student audience.
      • Julieann Ray Cheng is a dietician and a guest contributor to our food/healthy eating blogs.

 

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 30-40 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. However, in spite of this interest, we feel our current size is appropriate for our current activities and anticipated growth so it will be infrequent that we bring on new speakers.

 

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 from this year.

 

The speaker’s ability to put a face and experience behind a disease is so much stronger than a textbook will ever be. I will now be much more likely to appropriately add amyloidosis to a differential diagnosis moving forward in my clinical rotations and career.  William Bradford, MD Candidate, Tufts University School of Medicine

 

I love the concept of connecting us with both a concise resource (the video) and a specific patient to give a memorable experience. The sheer volume we learn as medical students can cause glossing over of uncommon diseases. I feel more likely to remember and more equipped to include amyloidosis in a differential.   Liisa Dollinger, MD Candidate, Case Western Reserve School of Medicine

 

As medical students we often only get the textbook definition of so many diseases, and when we read over the symptoms and treatments we merely just memorize and pass them over.  Mackenzie’s Mission brings so much more than just the textbook definition of Amyloidosis. It brings the emotion, the struggle, pain, frustration, things that we don’t see on paper. This is so important for us as future physicians to see and hear, because this disease is not just a question on the test it is somebody’s life. And, it truly reminded me of why I am here. More medical students need to hear this!    Zachary Hostoffer, DO Candidate, Lake Erie College of Osteopathic Medicine

 

Our school’s curriculum is organized by different organ systems, so I often think that multi-system diseases, such as amyloidosis, aren’t presented as clearly as other diseases only affecting one organ system. I learned so much about the complexity and severity of amyloidosis because of this presentation and I think hearing Beth’s story really helped me to understand why this disease often goes undiagnosed. Hearing her journey will remind me to advocate for my future patients with amyloidosis and other complex, incurable diseases.   Sydney Shade, MD Candidate, Geisinger Commonwealth School of Medicine

 

As a medical student, I have spoken to several patients and have participated in many patient presentations, but they always seem to miss the mark. We need to hear about the emotional aspects and challenges at home that accompany the journey to diagnosis and treatment. This presentation covered all of that with the clinical information included. Raymond Stemrich, MD Candidate, Geisinger Commonwealth School of Medicine

 

We are pleased with all we have accomplished thus far, energized by the feedback, and excited about the future! With much love and appreciation,

Mackenzie, Lane, 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, either as part of the curriculum or to student interest groups, of the following medical schools.

Albert Einstein 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

Tufts University School of Medicine

University of Arizona College of Medicine, Phoenix

University of Arizona College of Medicine, Tucson

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

 

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

 

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

 

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/

 

ASB: 2019 Year-End Review

It’s been an exciting 11 months!! We have closed out 2019, nearly one year from our launch last February 1st, and we wanted to send a recap of how it went and what we see looking ahead for 2020.

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. 

The cornerstone of our effort is our group of patient speakers, who passionately volunteer their time to give back and share their stories of life with amyloidosis. Augmenting their real-life journeys, all students invited in our outreach can view an educational video on the disease and have access to a curated library of presentations by amyloidosis experts on the disease and diagnosis as well as numerous patient survivor stories. We so appreciate each and every one of our speakers!

We launched our initiative on February 1, 2019 and spent the first two months getting our operational and digital platform in place (www.mm713.org/speakers-bureau/ ). In April, we began emailing medical schools, developing our educational library, enlisting the support of expert advisors, and recruiting amyloidosis patient speakers.

We needed to build a platform for the ASB to support an ongoing annual initiative. In addition, knowing we were forging new territory we set a relatively modest goal for our first partial year, Fall semester 2019, which was to secure 15 medical school presentations. We are proud to say we accomplished both!  As you’ll read below, we now have an operational infrastructure for growth year-on-year. In addition, for the Fall semester 2019 we made 22 presentations, with our materials reaching over 4,200 medical students. Our first year — a success!

So let’s recap the details of what we accomplished in eleven short months. 

    • Reached out to 258 medical schools and student interest groups across the U.S.
      • 50% responded to our inquiries.  Of these,
        • 46% responded with some level of interest,
        • 32% passed us on to a colleague for consideration but never heard from anyone,
        • 9% said their curriculum was full and not open to new additions, and
        • 13% indicated they were not interested.
    • Scheduled 32 presentations, 22 were made in the Fall 2019 and 10 more are on the calendar for Spring 2020.  Another 10 are queued up to be scheduled for Spring 2020. 
      • According to the schools for these 32 presentations, the ASB educational information is estimated to reach around 6,200 students!
    • Names of schools scheduled include:
      • 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
      • Loyola University Chicago Stritch School of Medicine
      • Mayo Clinic Alix School of Medicine, Rochester
      • Mayo Clinic Alix School of Medicine, Scottsdale
      • 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 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
      • UNLV School of Medicine
      • Virginia Commonwealth University School of Medicine
      • Wayne State University School of Medicine
      • Wright State University Boonshoft School of Medicine

 

  • Organized a semi-annual email to the Deans of all medical schools, queued for May and October. First one went October 2019.

 

  • Recruited 44 patient speaker volunteers across the U.S. with a wide array of types of amyloidosis, the most prevalent being AL and ATTR (both hereditary and wild-type). They have brought wonderful energy and transparency in sharing their stories, offering raw insights into managing through such a difficult disease. It’s a passionate commitment from them, paying it forward to those that follow. They are the priceless cornerstone of our success and we are endlessly grateful. A few of our speakers have summed it up so eloquently.

It was a pleasure to speak with 2nd year medical students about my experience as not only a cardiac AL survivor, but as a heart transplant survivor as well. I think the ASB is going to change the face of Amyloidosis and be instrumental in making strides in early diagnosis and treatment. 

I can think of little that is more rewarding in my medical journey than discussing this disease with those who might be in the position to recognize it in their patients now and in the future.

I was really looking for something good to come out of a personally bad situation. To be able to help raise awareness of future doctor’s is a great way of doing that.

 

  • Developed an educational library comprised of multiple components, with the emphasis of the content towards diagnosis rather than treatment. Documents include:
    • Amyloidosis Awareness – an introduction to amyloidosis, laying a broad foundation of the disease, developed by experts.  Note: the video of this, narrated by Michael York, is shown at the onset of every presentation.
    • A presentation on diagnosing amyloidosis (J. Mark Sloan, MD)
    • A presentation on diagnosis of amyloidosis (Maria Picken MD, PhD)
    • A presentation on amyloidosis and the kidney (Laura M. Dember, MD)
    • A presentation on cardiac amyloidosis (Martha Grogan, MD)
    • A presentation on cardiac amyloidosis (Brett W. Sperry, MD)
    • A presentation on What Every Cardiologist Needs To Know (Martha Grogan, MD)
    • A presentation on the diagnosis of amyloid cardiomyopathy (Kumal Bhatt, MD)
    • A presentation on Amyloid Polyneuropathy (Janice Wiesman, MD)
    • A presentation on Amyloidosis & the Gut (John O. Clarke, MD)
    • A presentation on ATTRwt Amyloidosis (Mat Maurer, MD)
    • A presentation on an Overview of hATTR (Fredric Ruberg, MD)
    • A presentation on the Central Nervous System and Ocular Involvement in hATTR (Chafic Karam, MD)
    • A presentation on pathology and laboratory testing for amyloid (Alton Farris MD, David Jaye MD)
    • A selection of patient survivor stories, highlighting their journey with the disease.

 

  • Received the support of 33 advisors who include medical experts and influencers in the world of amyloidosis, some of whom are also patients. A number of our advisors are active in our efforts and contribute their specialized expertise in a variety of ways, such as educational development, medical school introductions, and patient speaker assessment/development. We are so appreciative of their  support, offering powerful affirmation and credibility to our efforts. 

We have learned a few things from our early efforts which have helped us to adapt and to strengthen our offering. For example, we initially focused exclusively on getting integrated into the curriculum. We found that to be far more difficult, as curriculums are already dense and offer rare opportunities for adding in a one-hour segment for a rare disease. Thankfully, early on we learned about student interest groups (SIGs) as an alternative to reach a portion of the students. Thus our outreach is dual-focused: to those determining the curriculum and to the leaders of the relevant SIGs. In a second example, we initially thought that requiring students to read one presentation in advance was not too much of an ask. Wrong. We found that only 5-10% of students did so. Thus we shifted to have advance reading be optional, and we play a 10-minute Amyloidosis Awareness video at the onset of the presentation. The feedback from this adjustment has been well received. Gathering and listening to feedback, and being willing to pivot and adapt along the way, will continue to be an important part of our mindset.

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’s a glimpse into what students are telling us.

The presentation helped put a human face to a disease that is often only seen in test questions. You can easily forget a question, but it is much harder to forget a face.  Mayo Clinic Alix School of Medicine; Ramin Garmany, MD-PhD candidate

Amyloidosis is something we often call a “Zebra” disease. Its presentation is odd and confusing and its treatments few. Since AL is most treatable early, keeping it in your differential is so important. Having ASB talk at my school reinforced that idea. I believe that I will be a better physician for having attend this lecture.  University of Illinois College of Medicine Rockford; Rachel Miller, MD Candidate

It’s difficult to imagine as a student the impact of trying to find a diagnosis when your condition is so rare. Just hearing the first hand impact of trying to find a diagnosis was impactful. It was really valuable to hear two patient’s experiences, it reinforced the diversity of clinical presentations.  Tufts University School of Medicine; Kathryn Kompa, MD Candidate

Incredibly valuable to understand the patient’s journey throughout her disease progression. Her presentation made the hardships and resilience of an amyloidosis patient tangible and forced us to think about the disease as more than just facts presented on a powerpoint slide.  Loyola University Stritch School of Medicine, Alexandra E. Dereix, MD Candidate

This presentation was a wonderful supplement to my medical education because it brought amyloidosis to life and reminded me that there are actual people behind these devastating diseases. During the second year of medical school, it can seem very disconnected and abstract to study disease after disease and memorize the clinical presentations, treatments, and prognoses. It is refreshing to hear from an actual patient and be reminded of why we’re in medical school.  Loyola University Stritch School of Medicine, Alexis Stefaniak, MD Candidate

This experience gave me both a greater understanding of amyloidosis as a medical condition, as well as insight into how such a disease can affect someone’s quality of life. I think that after this presentation, I will be a more informed physician and a better advocate for my patients in the future.  Loyola University Stritch School of Medicine, Erin McCune, MD Candidate

This was an incredible experience full of insight; learning about amyloidosis from the patient perspective will aid me in becoming a more knowledgeable and empathetic physician in the future.   Loyola University Stritch School of Medicine, Katherine Bauer, MD Candidate

There is no learning tool more powerful than hearing a patient’s story for a disease. It not only puts a face to the condition, but the emotional memories you form from these experiences stick with you throughout your clinical years and beyond. Amyloidosis came to life during this presentation, and now we have the tools and knowledge to recognize it in our future patients. Having such a talented speaker and vetted resources allowed us to feel engaged and prepared to understand a condition that is not as rare or difficult to treat as we think!   Virginia Commonwealth University School of Medicine, Amber Domato, MD Candidate

 

Looking forward, we have quadrupled our goals for 2020 — to secure 60 presentations. We will start with the schools we have already presented to and discuss returning, and those schools that have voiced interest. Of course, we will continue our outreach to those we don’t have a dialogue with in hopes of a breakthrough.

We are proud of what we have accomplished in our first calendar year, thankful for the support from so many, and are energized about our potential. It truly is rewarding and exciting to be a part of helping to change the trajectory of this disease for future patients.

With warm regards,

Mackenzie, Charolotte, and Deb

 

ASB: Our First Six Months

It’s been a quick six months since we launched the Amyloidosis Speakers Bureau, and we wanted to provide an update about our progress and all we have accomplished so far.

 

Our mission is to educate future doctors about the disease, through both a patient speaker and an educational packet. Each year we will reach out to medical schools across the U.S., first asking to present to their students within their curriculum, but if that is not possible, we are finding success through their student interest groups.

 

We started our initiative on February 1, 2019 and spent the first two months getting our operational and digital platform in place (www.mm713.org/speakers-bureau/ ). In April 2019, we began emailing medical schools, developing our educational packet, and recruiting amyloidosis patient speakers.

As of August 1, 2019, here are the numbers for our 2019-2020 school year.

  • Reached out to 194 medical schools and student interest groups.
    • 46% have responded to our inquiries.  Of these,
      • 33% responded with interest,
      • 42% have passed us on to a colleague for consideration and we are waiting,
      • 10% have said their curriculum is full this year and not open to new additions, and
      • 15% have indicated they are not interested.
    • 10 presentations have been scheduled, 4 are in the queue to be scheduled, and more are expected.
      • According to the schools, these 10 presentations have the potential to educate 1,350 students. As future presentations are added to the calendar, this number will obviously increase.

 

  • Recruited 34 patient speaker volunteers across the U.S., with a wide array of types of amyloidosis. 

 

  • Developed an educational packet comprised of seven components. The emphasis of the content is towards diagnosis rather than treatment.
    • An introduction to amyloidosis, laying a broad foundation of the disease, developed by experts in the industry
    • A presentation on diagnosing amyloidosis 
    • A presentation on amyloidosis and the kidney
    • A presentation on cardiac amyloidosis
    • A presentation on the diagnosis of amyloid cardiomyopathy
    • A presentation on pathology and laboratory testing for amyloid
    • A selection of patient survivor stories, highlighting their journey with the disease

 

  • Received the support of 30 advisors, who include medical experts, influencers, and patients in the world of amyloidosis. A number of our advisors are active in our efforts and contribute their specialized expertise in a variety of ways, such as educational development, medical school introductions, and patient speaker assessment/development. 

 

Much work remains to get a connection with the remaining 54% of our universe, and each week, we advance our outreach efforts. We anticipate our push for the current school year will continue throughout the fall, and then in the spring of 2020, we will be starting our push for the 2020-2021 school year, reaching out to all schools and student interest groups.

 

We are proud of what we have accomplished in our first six months, and are energized about our potential. We will be collecting feedback and data on our efforts, adapting our approach where appropriate, and expect increasing success over time.

 

We wanted to extend a special thank you to our speakers, for without them, there would be no ASB. They are an integral part of making the ASB a success by helping to change the trajectory of diagnosing this disease and increasing patient survivorship. We are proud to have them on the team. If you are a patient in the U.S. and interested in joining our initiative, please email us at asb.mm713@gmail.com. We’d love to talk!
 
Be sure to follow us and track our progress, whether it be by signing up for our Mackenzie’s Mission mailing list, or following us on Facebook.
With warm regards and much appreciation. 
Mackenzie, Charolotte, and Deb
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