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