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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: 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: 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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