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Breaking News – FDA approves WAINUA for ATTRv-PN

The U.S. FDA has approved a new treatment for adults living with polyneuropathy of hereditary transthyretin-mediated amyloidosis (ATTRv-PN).

WAINUA™ (eplontersen) granted regulatory approval in the U.S. for the treatment of adults with polyneuropathy of hereditary transthyretin-mediated amyloidosis.
  • U.S. FDA approval based on Phase 3 NEURO-TTRansform results showing WAINUA demonstrated consistent and sustained benefit halting neuropathy disease progression and improving neuropathy impairment and quality of life
  • Additional regulatory reviews for WAINUA underway in rest of world
  • WAINUA will be available in the U.S. in January 2024

READ PRESS RELEASE HERE

“Many people living with hereditary transthyretin-mediated amyloid polyneuropathy are unable to fully enjoy their lives because of the relentless, progressive and debilitating effects of the disease,” said Michael J. Polydefkis, M.D., professor of neurology at Johns Hopkins University School of Medicine and an investigator in the NEURO-TTRansform study. “Approval of WAINUA represents a meaningful advancement in treatment, one that gives those who are living with transthyretin-mediated amyloid polyneuropathy help managing the disease.”

Amyloidosis Speakers Bureau (ASB)

The content of medical education is appropriately clinically centered. The delivery of this content remains relatively unchanged over the decades – typically taught by medical professionals through lectures, PowerPoint presentations, and patient case studies. We posit that there is an essential missing component: the patient voice. During the didactic years, medical students rarely hear from patients about their symptoms, diagnostic journey, emotional management, support and resources, and relationship with the medical community. These insights can offer impactful and durable education that complements traditional didactics in developing future medical practitioners.

Why is this important? Lack of awareness in the healthcare field is among the most critical and urgent challenges facing the amyloidosis community today. Raising awareness to accelerate diagnosis, coupled with available FDA-approved treatments, leads to a significant improvement in patient lives. 

At the Amyloidosis Speakers Bureau, two years ago we set out to understand whether our patient educators were making an impact following a presentation to U.S. medical students. Would their narratives elevate the students’ understanding of this rare disease and influence their attitudes and behavioral intent regarding patients?

In short, our study findings indicated “yes.”   Click HERE to read the peer reviewed published study.

The paper finds that, in a study where medical students were randomly assigned to either listen to an amyloidosis patient’s story or to a control group, those who heard the patient’s diagnostic and treatment journey differed in attitudes and intent from those in the control group. Those who heard the patient’s story were significantly more likely to intend to improve their communication with patients, learn more about amyloidosis, and agree that listening to patients is a vital part of diagnosis. 

 

 

With great appreciation we thank Dr. Adebanke Adebayo, Dr. Katherine Rowan, and Dr. Vaishali Sanchorawala for their important contribution to this paper. We would also like to thank the many ASB patient educators who contributed to this study and continue to give their time to raise awareness to the medical community through sharing their personal journeys. We could not have done this study without any of these wonderful individuals!



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

2021: The Virtual World Continued

We are super grateful for our growing list of supporters, many of whom are becoming repeating donors (which of course, we love), investing in our effort from year to year. THANK YOU for supporting Mackenzie’s Mission and the Amyloidosis Speakers Bureau, as without your support we could not have achieved new highs.

 

HOW DID WE DO IN 2021?

This was our fourth full year of operation, busy and loaded with lots of activities to advance our mission — to make a difference in the fight against Amyloidosis. Operationally, we continued to run extremely efficient and lean, and laser-focused on making a difference in two ways.

  • Raising awareness about Amyloidosis, which we believe can lead to earlier diagnosis and better outcomes for patients.
  • Supporting medical research on Amyloidosis, seeking the cause of the disease and more effective treatments to improve and extend lives.

 

RAISING AWARENESS

Amyloidosis Speakers Bureau (ASB):  You may recall that back in February 2019 we launched the Amyloidosis Speakers Bureau as the cornerstone of our raising awareness effort.

Amyloidosis is considered a rare disease and is not well known. However, there is a belief within the medical community that this disease is not rare, it is underdiagnosed or diagnosed when it is too late to make a difference. The complexity of this disease makes diagnosis one of the biggest challenges affecting patient lives. It is not uncommon to hear from patients that it took multiple years and multiple doctors to ultimately arrive at a correct diagnosis, all the while the disease continued to progress. Until a cure is found, it is imperative to raise awareness within the medical community so that a diagnosis can be determined much sooner, enabling effective treatments and therapies to slow the disease progression and improve patient survival.

Our response to this crisis is the Amyloidosis Speakers Bureau (ASB), an initiative focused on educating the medical community about this disease through presentations from amyloidosis patients, an educational video from medical experts, and our monthly educational updates. Our target audience is the next generation of doctors during their first/second year of medical school, as well as residency programs for physicians launching their medical career. Of special note, we are super excited about our 2021 expansion beyond medical students to educate internal medicine residents – those new physicians beginning their career seeing patients and developing diagnostic skills. To enhance our offering for these physicians, with the help of our medical advisors we created specialized educational videos about this disease.

During 2021, we saw presentations return to pre-pandemic levels, but they remained nearly 100% virtual. With our target set at 60 presentations, we were pleased to close the year at 61 presentations to more than 2,400 medical students and resident physicians. Yay! You can read more in our ASB: 2021 Year-End Review. I hope you will take a few minutes to read the review and learn about our wonderful progress!

ASB Effectiveness and Impact Study:  We have long been interested in understanding the effectiveness and impact of the Amyloidosis Speakers Bureau. With the valuable assistance from one of our speakers, Dr. Kathy Rowan, along with a Ph.D. student, we launched a pilot study in the spring 2021. The data from over 300 responses was astounding and compelling… enough to lead us to launch a formal study this fall. We are appreciative to have Dr. Vaishali Sanchorawala of Boston University serving as an expert medical advisor to our study. In 2022 we anticipate analyzing the data collected and, if informative, writing a paper and seeking publication. We are hopeful that indeed, our study will validate the power and impact from patient stories to the educational and clinical work of medical professionals.

ASB Briefs:  After every presentation we invite medical students interested in continuing to learn about amyloidosis to join our ASB Briefs mailing list. Today, that list numbers over 350! Each month we send a brief discussion about some aspect of the disease with a growing library of links to informative presentations / videos by medical experts, and announcements regarding advancements in treatment. The intention is to keep amyloidosis more front-of-mind and educate on the many facets of this complex and multi-systemic disease.

Blogs: We publish periodic blogs on our website about amyloidosis on topics such as symptoms, diagnosis, treatment, expert updates, resources, and caregiver support.

Webinars: In exploring other ways to offer insightful education to our target audiences, we held our first special webinar. Attendees heard Dr. Rodney H. Falk and his patient Sean Riley (one of our ASB speakers) 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. Attendees also heard Dr. Falk’s thoughts on how listening, observing, and questioning are critical to getting to a diagnosis, along with his recommendation for providers to always bring an elevated suspicion and curiosity to find answers. Here’s a link to the replay in case you’d like to view:  The Power of the Patient/Physician Collaboration

A second webinar coming out of a medical school presentation focused on Wild-Type Amyloidosis. Students heard world-renowned expert Dr. Mathew S. Maurer and his patient John Basdavanos discuss John’s medical journey. Dr. Maurer provided a brief overview of Wild-Type Amyloidosis (ATTRwt), while John provided the patient perspective. Together, these insights offered a compelling story about battling a life threatening disease. Here’s a link to the replay in case you’d like to view:  Wild-Type Amyloidosis – A World-Renowned Physician & His Patient

Mailings, Social Media & Miscellaneous: We spread this information across our platform which includes:

  • our website, visited by over 11,500 people in 2021
  • our mailing lists, with 1,375 subscribers
  • our Facebook page, with over 1,225 followers
  • our YouTube channel with 130 subscribers and 3,745 views of our videos in 2021

With hopes to help our communities, we co-sponsored a two-part Comfort Workshop with notable leader Jen Marr, founder of Inspiring Comfort. During the workshop, Jen, author of Paws to Comfort, shared highlights of her book, educating participants with tools and strategies for helping those around us, and ourselves, and how to comfort and connect during these challenging times.

 

SUPPORTING MEDICAL RESEARCH

As we have said over and over, nothing happens in research without money. And knowing the NIH currently funds only 11% of its applications, this leaves a heavy burden on private foundations and individuals to help close the shortfall gap. So, our work to raise money matters.

Monies we send to research institutions are derived from two sources: general donations to Mackenzie’s Mission and proceeds from our Play FORE The Cure charity golf tournament. This year we were thrilled to return to hosting the event, providing players with a fun 24-player Presidents Cup format, with two teams of twelve competing for the title. We’re proud to say the event this year raised over $185,000, bringing our cumulative total raise from three Play FORE The Cure tournaments to over $520,000!

To help advance medical research, a significant percentage of our monies raised was donated to four world-class research institutions.

  • Mayo Clinic’s Amyloidosis Research Fund
  • Boston University’s Amyloid Research Fund
  • Tufts Medical Center’s Amyloid and Myeloma Research Fund
  • Scripps Research’s Kelly Lab (Dr. Jeffery Kelly)

 

WHAT ARE OUR GOALS FOR 2022?

In short, keep doing what we are doing, but do more of it.

Raising Awareness

  • Focus our energies on the Amyloidosis Speakers Bureau (ASB), expanding our medical school outreach. This is where we believe we can make the biggest impact from our efforts. Engagement from the amyloidosis patient community, securing meaningful grants, and proceeds from donations/fundraisers will be key to complement the operational and legal infrastructure required.
  • Complete our data collection and analyze the responses of our ASB Effectiveness and Impact Study. If meaningful, develop a paper to submit for publication.
  • Publish educational blogs to the growing medical student mailing list, as well as to our broad mailing list and website.
  • Explore additional opportunities, both large and small, which enable us to further spread the word on the importance of early diagnosis.

 

Supporting Medical Research

  • Donate a meaningful percentage of our general donations and charity golf tournament proceeds to leading research institutions whom we know are working to advance the knowledge and find answers about this disease.

 

WITH MUCH APPRECIATION AND GRATITUDE

You may have donated cash or securities, played in our charity Play FORE The Cure charity golf tournament, participated in one of our raising awareness campaigns, or given us a grant to support our Amyloidosis Speakers Bureau medical education initiative. You may have been an Amyloidosis Speakers Bureau speaker, liked/shared our Facebook posts, or taken the time to read our blogs to learn about amyloidosis. Whether you did one of these or many, you helped us push forward our fight against this disease and we appreciate your support.

We also want to extend a special thank you to our volunteers who passionately and graciously devote their time and expertise. Whether to help at our charity golf tournament, or one of many facets of the Amyloidosis Speakers Bureau (e.g., speaker development, running Zoom presentations, researching contacts, writing ASB Briefs, leading the charge for our ASB impact study, professionalizing our videos, and running our webinars), we can’t begin to accomplish all we have without them. Thank you!

I am encouraged by the impact Mackenzie’s Mission is already making after just a few short years. Connecting with the amyloidosis community and working together to make an impact is extremely rewarding. There is much work to be done, but with so much help from the community and our supporters I know we can win this fight!

With warm regards for a wonderful and hopeful 2022,

Mackenzie

 

AN UPDATE ON ME

This past year I devoted my time largely to Mackenzie’s Mission and the work of the Amyloidosis Speakers Bureau. Outside of the foundation, I work as a clinical technician at a local hospital, gaining valuable hands-on patient experience. Happily, I have been accepted into the Physician Assistant program at Northeastern University, and I can’t wait to return to my alma mater and Boston in the fall of 2022. In spite of COVID, I was able to spend a week in Iceland, taking in their breathtaking landscape and beautiful country. As for my disease, I am on a regimen that keeps my disease under control, and I continue to feel great.

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

 

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

 

On the Other Side of COVID

How are you doing? I mean, how are you really doing?  Often we answer automatically with a superficial, “I’m fine, thanks.” Let’s start a long-overdue conversation. Life is hard, and we are not okay.

As for me, I’m medium. I’ve fared worse times, but the isolation, uncertainty and fear are getting to me.

We are all struggling – sickness, job loss, money problems, isolation, separation. Whatever COVID – 19 looks like for you, I’m guessing it’s not great.

I’m no stranger to adversity. One of the most challenging times of my life was the day my beautiful sister died suddenly from a brain aneurysm. Another was the day I was diagnosed with AL Amyloidosis and given a fairly bleak outlook. (I miss her every day, and it took two years of chemo and a clinical trial to get me into remission, but here I am).

I have known heartache as we all have. I am not telling you this to gain your sympathy or pity. Because I genuinely don’t want you to feel sorry for me. I am telling you this to make a connection.

We all know pain. We have all suffered. It’s not a who’s had a crappier year contest.

It’s about conversation – open, real discussions on connection and comfort and being part of something bigger. We need these things. We are hard-wired to crave human contact. That’s one of the big reasons we are all struggling right now.

What got me through those hard times? As cheesy as it sounds, mindset, love, comfort, connection, and support. Will I get through this too? YEP. And so will you.

Just keep repeating to yourself, “This is not my permanent destination. Life will not be like this forever.”

 

How Will I Get Through the COVID-19 pandemic?

 

  1. Shift your mindset to “I will get through this.”

Make it a priority in your life to actively keep a positive mindset. Pretty sure I was born a pessimist. Luckily, optimism is a skill that we can all learn. It’s an unfortunate circumstance in life, but bad things happen to all of us. We can’t always control the events, but we can control our reactions.  Do you want to be a victim or a hero?

  • You always have a choice. Be intentional with your reactions—practice pausing to give yourself time to respond.
  • Find the joy – actively seek it out. A cup of tea, the way the sun shines in your window, a delicious meal. If you’re having trouble finding it, create it.
  • Practice stress relief, meditation, and gratitude. Schedule time every day to relax, reflect and count your blessings.
  • Please stop bombarding yourself with all the negativity in the world (take a break from the news and social media).

 

  1. Get Busy!

All those things you’ve never had the time to complete?  I’m guessing you might have time now.

  • Learn a new skill (life-long learning is good for your health, can reduce stress levels, improve memory, and offset cognitive decline). [1]
  • Get outside and discover your neighbourhood. Make a list of places you want to visit when the world opens up again (bonus…maybe you’ll find a local small business you can support).
  • Try a new hobby, pick up an old one, test out a new recipe or food you have never tried.
  • Finish up those tasks you have been avoiding (those closets aren’t going to organize themselves). The simple act of checking something off a to-do list causes our brains to release the feel-good hormone dopamine. [2]
  • Uneasy around technology? Maybe now is the time to test it out.

 

  1. Create a daily routine

For many of us, our regular routines have been thrown off track! Set yourself up with a new COVID routine, even if it is temporary. Our brains love order, and you’ll feel less stress if you are in control of your time.

  • Include things you can check off a to-do list to gain a feeling of accomplishment (even if it’s have a shower and wear pants today).
  • Schedule time to do something you enjoy. The simple act of looking forward to something releases those feel-good hormones, [3]and helps to brighten your mood.
  • Be sure to include connecting with people somehow (maybe a daily chat with a friend or family member, or joining an online meeting).

 

  1. Do something to help others.

A win-win situation! Not only does it benefit whoever is on the receiving end of your kindness, but it makes you feel good about yourself and generally makes the world a better place. It doesn’t have to be a huge grand gesture – a little kindness goes a long way!

  • Call someone to check in on them.
  • Send flowers or a surprise to a loved one.
  • Drop a little treat on a neighbour’s doorstep.
  • Paint rocks/signs and leave them on walking trails.
  • Donate your time to a charity.
  • Think about what you are good at and do that – do you bake? Knit? Fish? Golf? How can you use your talents to do some good and make the world a better place?

 

  1. Be kind and seek out a connection.

We all need to be kind to each other and ourselves right now. Part of the reason this isolation is so challenging is that we are hard-wired to seek human connection, especially in times of hardship and stress.

Jen Marr, CEO and founder of Inspiring Comfort, and Author of Paws to Comfort, explains “During difficult times, our bodies release the stress hormone cortisol, along with a little oxytocin (the relationship hormone). It’s like your body is saying: we are hurt, go find someone.”

  • Reach out to a loved one – think of it as physical distancing rather than social distancing. Get creative with the way you connect with others.
  • Join an online support group.
  • Create a group with people who have similar interests, like a book club or knitting club where you all work on the same projects.
  • If you are struggling, ask for help.

 

We are all built to do hard things. And you are stronger than you might feel right now. Take it one day at a time, one step at a time. Brighter days are ahead.

 

——————

Lori Grover is a guest writer for Mackenzie’s Mission. She was diagnosed with AL Amyloidosis in 2016 and writes to share experiences and lessons learned during her journey.  More wonderful blogs by Lori can be found on her page Amyloid Assassin.  Lori is a freelance copywriter, and a mom of two wonderful boys. She loves writing, reading, and all things crafty. 

[1] Harvard Business Review

[2]  Psychology Today

[3] Psychology Today

 

2020: The Year of the Pivot

Let me begin by saying THANK YOU for supporting Mackenzie’s Mission last year.

We are so thankful for our supporters! You may have donated cash or securities, participated in one of our raising awareness campaigns, or given us a grant to support our raising awareness initiative. You may have been an Amyloidosis Speakers Bureau speaker, liked/shared our Facebook posts, or taken the time to read our blogs to learn about amyloidosis. Whether you did one of these or many, you helped us push forward our fight against this disease and we appreciate your support.

HOW DID WE DO IN 2020? 

This was our third full year of operation, busy and loaded with lots of activities to advance our mission — to make a difference in the fight against Amyloidosis. We work to make a difference in two ways.

  • Raise awareness about Amyloidosis, which we believe can lead to earlier diagnosis and better outcomes for patients.
  • Support medical research on Amyloidosis, seeking the cause of the disease and more effective treatments to improve and extend lives.

Raising Awareness

You may recall that back in February 2019 we launched the Amyloidosis Speakers Bureau (ASB), the cornerstone of our raising awareness effort going forward. Now closing out 2020, our second year was certainly a challenging one, but proudly one where we nearly achieved our goals which we have summarized in our ASB: 2020 Year-End Review. I hope you will take a few minutes to read the Review and learn about our stunning progress!

In addition, we were busy launching videos and new blog posts.

The feedback we have received has been heartwarming and energizing. While being an inspiration to others is wonderful, we are moved by the conversations we have had with others affected by this disease. We share a common bond with uncommon experiences. Knowing we are not alone in this fight gives us all strength. Also, ASB testimonials we have received from both medical professors and medical students reinforces our thesis that education through patient stories strengthens their education about this disease which, we firmly believe, will positively impact the timeliness of future diagnoses and improve patient outcomes.

What two medical school professors had to say:

From Theresa Kristopaitis, M.D., Professor, Assistant Dean for Curriculum Integration, Loyola University Stritch School of Medicine

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. 

From Gordon Huggins, MD, Associate Professor of Medicine, Tufts University School of Medicine, Cardiologist, Tufts Medical Center

I am writing this enthusiastic letter of recommendation on behalf of the Amyloidosis Speakers Bureau (ASB), a unique educational resource to instruct medical students about amyloidosis. By making patient speakers and educational materials curated by ASB’s medical advisors available to medical schools, it is my hope that the Amyloidosis Speaker Bureau will help form durable impressions on medical students and physicians that will translate to more widespread awareness, faster diagnoses, earlier initiation of treatment, and ultimately better survival for amyloid patients. I encourage you to integrate the resources made available by the ASB into your annual curriculum, as it has the potential to significantly alter the course of this disease.

What medical students had to say:

Ike Chinyere, MD Candidate, University of Arizona College of Medicine – Tucson

I wish this was integrated into the didactic curriculum, particularly in cardiology (“CPR block” at our school). 

Sophia Chen, MD Candidate, Lewis Katz School of Medicine at Temple University

We touched upon amyloidosis very briefly in our medical curriculum but hearing about the disease and how it significantly impacted a person’s life makes it so much more memorable and humanizing. It’s easy to just rattle off a list of symptoms when describing the disease but hearing exactly how those symptoms affect a person’s quality of living and how the long diagnosis process really takes a toll on a person’s mental well-being makes the disease so humanizing. 

Rachel To, MD Candidate, Chicago Medical School, Rosalind Franklin University of Medicine and Science

The patient speaker’s testimony was engaging and really brought to light the perspective and challenges faced by those afflicted with amyloidosis. As medical students, we learn about amyloidosis in our curriculum but meeting a patient with amyloidosis and hearing their story is completely different. Would highly recommend that every medical student should hear a patient testimony about amyloidosis!

Alexander Hirsch, MD Candidate, Yale School of Medicine

Being able to hear from a patient with a specific disease, whether common, rare, or somewhere in between, is so important for both our academic education as well as our development as doctors. During the preclinical years, it can be easy to get lost in the textbook descriptions of patients and forget about what real patients actually go through. Talking to real patients makes me remember why I went into medicine in the first place. 

Supporting Medical Research

As we have said over and over, nothing happens in research without money. And knowing the NIH currently funds only 11% of its applications, this leaves a heavy burden on private foundations and individuals to help close the shortfall gap. So, our work to raise money matters.

  • Due to COVID-19 our third annual Play FORE The Cure golf tournament – our only formal fundraising event – was cancelled for the safety of our participants. We hope to hold this event in 2021!

A significant percentage of our monies raised (excluding ASB grants and directed donations) was donated to four world-class research institutions.

  • Mayo Clinic’s Amyloidosis Research Fund and Dr. Morie Gertz
  • Boston University’s Amyloid Research Fund and Dr. Vaishali Sanchorawala
  • Tufts Medical Center’s Amyloid and Myeloma Research Fund and Dr. Raymond Comenzo
  • Scripps Research’s Kelly Lab and Dr. Jeffery Kelly

WHAT ARE OUR GOALS FOR 2021?

Raising Awareness

  • Focus our energies on the Amyloidosis Speakers Bureau (ASB), expanding our medical school outreach. This is where we believe we can make the biggest impact from our efforts. Engagement from the amyloidosis patient community, securing meaningful grants, and proceeds from donations/fundraisers will be key to complement the operational and legal infrastructure required.
  • Develop a framework to help assess the ASB’s effectiveness.
  • Publish educational blogs to the growing medical student mailing list, as well as to our broad mailing list.
  • Explore additional opportunities, both large and small, which enable us to further spread the word on the importance of early diagnosis.

Supporting Medical Research

  • Donate a meaningful percentage of our non-ASB donations and fundraising proceeds to leading research institutions whom we know are working to advance the knowledge and find answers about this disease.

 

I am encouraged by the impact Mackenzie’s Mission is already making after just a few short years. Connecting with the amyloidosis community and working together to make an impact is extremely rewarding. There is much work to be done, but with so much help from the community and our supporters I know we can win this fight!

With warm regards for a wonderful and renewed 2021,

Mackenzie

 

AN UPDATE ON ME

This past year I devoted my time largely to Mackenzie’s Mission and the work of the Amyloidosis Speakers Bureau. Outside of the foundation, I am starting a position as a clinical technician at a local hospital, gaining valuable patient experience as I prepare to apply to Physician Assistant school in April 2021. Earlier this year I was fortunate to be able to visit Antarctica, ticking an item off my bucket list of visiting all seven continents. As for my disease, I remain on a regimen to keep my disease under control and continue to feel great.

 

ASB: 2020 Year-End Review

 

What a year it has been for everyone!  Year-end 2020 brings us nearly two years since launch, and includes one and a half school years (or three semesters) of medical school.  During that time we have established our mission, pivoted from in-person to virtual thanks to COVID-19, achieved 92% of our presentation goal for 2020, and are excited for 2021!

Our mission is to educate future doctors about amyloidosis, with the belief that heightened awareness will lead to earlier diagnosis and ultimately improve patient survivorship. We know that the level of medical school education about amyloidosis runs the gamut, from a small mention in textbooks to classroom discussions with medical professionals, although the bias is overwhelmingly towards the “minor mention.” As a result, we are confident our efforts will provide students with a valuable enriched exposure to this disease to augment the medical school curriculum.

EXECUTIVE SUMMARY

  • Last year, we set our 2020 goal at 60 presentations, not knowing what was ahead. We gave 22 presentations in the Spring, and 33 presentations this Fall.  So while we didn’t quite reach our goal, we are super proud that we did achieve 92% of our goal!  Go us!
  • We are thrilled that our activities are expanding – not only are we returning to medical schools we presented to last year, but we are adding new schools to the roster. A long way to go, but still positive direction. A full list can be found at the end of this update.
  • Our agility in shifting last Spring to a virtual platform served us well. This rapid shift minimized the impact to our operations and, as a result, we were suspended for only a few months. By April, operations had resumed on a minimal basis. By August, operations were back to full swing, with everything being virtual since then.
  • We average around 45 speakers, which allows for diversity in our speaker population’s disease state and flexibility in their availability. This has served us well.
  • Our additional resources to develop speakers, their presentation styles, their stories, and their virtual audio/video capabilities has been well-received and we believe is translating to a higher quality offering.
  • We are particularly delighted that our medical school student mailing list – those interested post-presentation in continuing to receive information about amyloidosis – keeps growing and we will be at 100 in the near future! Content is pulled from experts and other trusted organizations with the intention to offer brief insights into the disease. 
  • This year, with the help of one of our speakers who is a professor/Ph.D. in social science, we will be investigating how we can better ascertain and improve our speaker/ASB effectiveness in the eyes of the medical students.
  • Each Spring and Fall we reach out to medical school deans, updating them on our activities.

 

THE 2020 NUMBERS

  • We reached out to nearly all 160 continental U.S.-based medical schools and student interest groups, met with varying degrees of interest (or no response and/or no interest in some cases).
  • We made 55 presentations in 2020, and have 10 already booked for Spring 2021. Since the ASB started, we now have 89 presentations logged. A complete list of schools we have presented to since we began can be found at the end of this email.
  • Roughly 20% of the presentations are within the curriculum; 80% are to student interest groups. Identifying the appropriate professor(s) and establishing a dialogue continues to be a big challenge.
  • Our educational materials, per the organizers, reached over 16,400 medical students, pushing us over 25,000 since we began.

 

SPEAKERS

The cornerstone of our effort is our group of wonderful patient speakers, who passionately volunteer their time to give back and share their stories of life with amyloidosis.

On average, we have around 45 active speakers, diversified by geography across the continental U.S., by amyloidosis type, by organ involvement, by gender and age. This is a rather deep bench, but we have found it both helpful and necessary. Helpful in that we can maximize attendance if we work around the preferred dates and times suggested by the schools. Helpful in that we can match specific disease states with audience focus (e.g., a cardiac amyloidosis patient speaker to a cardiology student interest group). Necessary in that periodically, a speaker’s personal situation may change and they need to step back either temporarily, or permanently. We are fortunate to have a steady pipeline of new speaker interest, which we spend time screening, qualifying and training. At present, we feel this is an appropriate number of speakers for our current and anticipated growth. 

One area we have added resources to is training and presentation development for our speakers. Thanks to one of our speaker volunteers who has extensive experience, we offer in-depth guidance for new speakers in the development of their presentation outline and rehearsal training for their delivery. In addition, prior to every virtual presentation we rehearse and test the speakers’ audio and video technology. For those partaking, it has been an appreciated additional level of support and we believe is translating to a higher quality offering.

We are saddened that one of our speakers, Mark Stinehour, succumbed to this disease at the age of 56. He was passionate about giving back and leaving a lasting legacy to make a difference for those to come. Our hearts and prayers go out to Mark’s family.

 

ADVISORS

We are proud to have an impressive group of medical experts and influencers in the world of amyloidosis, some of whom are also patients, as advisors to support our initiative. Our advisors are active in our efforts and contribute their specialized expertise in a variety of ways, such as medical school introductions, grant requests, educational development, and patient speaker assessment/development. We are extremely grateful for their assistance and believe that, thanks to their contribution, the ASB will make an even bigger difference in the diagnoses of this disease.  You can see our prestigious list of advisors on our website page www.mm713.org/speakers-bureau/ 

We are sad to share that one of our advisors, Dr. Janice Wiesman, passed away from COVID-19. Janice was an ardent and active supporter of our efforts and passionate about the world in which she lived. Our hearts and prayers go out to Janice’s family.

 

TESTIMONIALS – OUR TRUE REPORT CARD

Feedback from students and medical school professors has been extraordinarily positive. It reinforces to us that candid and authentic patient stories are a valuable complement to the medical school curriculum, strengthening the learning and deepening the durability for these future doctors about this disease. This is exactly why we do what we do. Here are just a few of the testimonials from this year.

 

The opportunity for second year medical students to hear the story of a patient with amyloid is invaluable. The presentation addressed aspects of pathophysiology they are learning and the human side of medicine. This presentation format offered an excellent teaching opportunity to inform doctors-in-training about this serious disease. Our students gained insight into the patient’s journey through diagnosis, treatment and the challenges ahead. We all appreciated the patient’s generosity in sharing her experiences. Having patients teaching medical students about amyloidosis will have a lasting impact on our future doctors with increasing awareness of this disease and ultimately will help future patients.  Theresa Kristopaitis, M.D., Professor, Assistant Dean for Curriculum Integration, Loyola University Stritch School of Medicine

 

Such a powerful presentation that I will carry with me throughout my whole career, no matter what specialty I go into! I not only learned the importance of keeping amyloidosis on my differential, but also the importance of really listening to your patients and working through the hard diagnoses together.   Solana Archuleta, MD Candidate, University of Colorado School of Medicine

 

I had several students make comments after the conclusion of the presentation that it was the best, one even said ‘exceptional,’ presentations given at our school from a patient.  The materials gave all of the students, including myself, a great introduction to some of the pertinent findings in patients with amyloidosis. Co-President of the Internal Medicine Interest Group, University of Arizona College of Medicine, Phoenix

 

Hearing Ed talking about his journey with Amyloidosis was an incredible experience that only further inspired me to want to be a better physician for my future patients. It is one thing to learn about a condition in the classroom, but hearing the real-world struggles with it from another human being provides a whole new perspective. Ed was open about his journey and shared his feelings during each step, giving us insight into what it is like to be a patient with Amyloidosis. I will take what I learned from this presentation and apply it in order to ensure that patients I see in the future do not have to deal with the same issues that Ed had to deal with.   Gurkaran Singh, MD Candidate, University of Arizona College of Medicine, Tucson

 

Diseases such as amyloidosis are often managed by specialists, but it is important for primary care physicians to recognize these signs and direct these patients to these specialists. Increasing awareness of these diseases among all physicians will help patients reach an answer sooner and can have a significant impact on their lives.  Yue Zhang, MD Candidate, Northwestern Feinberg School of Medicine

 

Looking ahead to 2021 we again will target 60 presentations, and seek to expand the list of schools we present to. We are pleased with all we have accomplished thus far, energized by the feedback, cognizant that we have much ahead, and hope we have made you proud. As always, we welcome any comments you may have.

Stay safe, happy holidays, and all the best for a new 2021!

Mackenzie, Charolotte, and Deb

Operating Committee of the Amyloidosis Speakers Bureau, sponsored by Mackenzie’s Mission

————————–

Since inception in 2019, the Amyloidosis Speakers Bureau has presented to medical students of the following medical schools.

California University of Science & Medicine, School of Medicine, San Bernardino

Central Michigan University College of Medicine

Chicago Medical School, Rosalind Franklin University of Medicine and Science

Cleveland Clinic Lerner College of Medicine

Columbia University Vagelos College of Physicians and Surgeons

Drexel University College of Medicine

Florida Atlantic University Charles E. Schmidt College of Medicine

Florida International University Herbert Wertheim School of Medicine

Florida State University College of Medicine

Geisinger Commonwealth School of Medicine

George Washington School of Medicine

Icahn School of Medicine at Mt. Sinai

Lewis Katz School of Medicine at Temple University

Loyola University Chicago Stritch School of Medicine

Mayo Clinic Alix School of Medicine, Rochester

Mayo Clinic Alix School of Medicine, Scottsdale

Northeast Ohio Medical University College of Medicine

Northwestern University Feinberg School of Medicine

NYU Grossman School of Medicine

Oakland University William Beaumont School of Medicine

Quinnipiac University Frank H Netter MD School of Medicine

Stanford University School of Medicine

Tufts University School of Medicine

University of Arizona College of Medicine, Phoenix

University of Arizona College of Medicine, Tucson

University of Chicago Pritzker School of Medicine

University of Colorado School of Medicine

University of Connecticut School of Medicine

University of Florida College of Medicine

University of Illinois College of Medicine, Chicago

University of Illinois College of Medicine, Peoria

University of Illinois College of Medicine, Rockford

University of Iowa Carver College of Medicine

University of Kansas School of Medicine, Wichita

University of Maryland School of Medicine

University of Massachusetts Medical School

University of Minnesota Medical School

University of Missouri Kansas City School of Medicine

University of Nevada Reno, School of Medicine

University of Pittsburgh School of Medicine

University of South Alabama College of Medicine

University of South Carolina School of Medicine, Columbia

University of Toledo College of Medicine

UNLV School of Medicine

Virginia Commonwealth University School of Medicine

Wayne State University School of Medicine

Wright State University Boonshoft School of Medicine

Yale School of Medicine

 

Adapting During COVID-19

While our amyloidosis patient presentations have always been in-person, whether in class or over lunch, during this unusual time surrounding the COVID-19 pandemic we are offering two excellent virtual alternatives, each accompanied by a presentation by one of our advisors. These virtual packages have already been shared with hundreds of medical students across the country and have been well received.

1a)  Live webinar. Hosted by the medical school on their platform, our patient speaker provides a live presentation of their journey with this disease, from symptoms through diagnosis and treatment, and life today, followed by real-time Q&A. Typically one hour in length, we are very flexible and work with the school’s desired date and time.

OR

1b)  Pre-taped patient video presentation.  Jessica, one of our patient speakers, shares her journey with cardiac AL amyloidosis with medical students at the University of Colorado School of Medicine. She takes the audience through her early symptoms, diagnosis, treatment, and her “new normal” life today, offering her perspective as a patient with a rare disease. Her emotional and compelling story is about 30 minutes long, followed by 10 minutes of Q&A from the students.

PLUS

2)  Clinical PDF on Diagnosing Amyloidosis.  An excellent powerpoint presentation “Diagnosing Amyloidosis: From Cardiology to Neurology” by Dr. J. Mark Sloan from Boston University’s Amyloidosis Center, including patient and pathology pictures, and clinical diagnostic information.

We believe, and feedback confirms, these virtual packages are a compelling alternative to in-person that advances students’ knowledge of amyloidosis while sharing valuable insights from both the patient and clinical perspectives.  These virtual packages can be customized to focus on other types of amyloidosis, organ involvement, and expert medical presentation topics to meet specific audience interests.

If interested in learning more, please contact us at asb.mm713@gmail.com.

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