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.