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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/

 

Rare Disease Day 2020

NORD (National Organization for Rare Disorders) is the official U.S. sponsor of Rare Disease Day®, which occurs on the last day of February each year.  On Rare Disease Day, millions of patients and their families around the world share their stories to promote awareness of the challenges, hopes, and needs of those living with rare diseases.

There has been great progress in rare disease research, in big part thanks to the advocacy work of the rare disease patient community. Patients are participating in research and, in some cases, they have taken the reins themselves to fund their own research. For example, I have participated in several clinical trials and surveys.

The number of raising awareness initiatives are also increasing. Patients and caregivers, foundations, and physicians are participating in a myriad of initiatives to spread awareness. We, too, are involved to make an impact.

Last February Mackenzie’s Mission launched the Amyloidosis Speakers Bureau (ASB), an initiative we believe so important it is the cornerstone of our raising awareness efforts.

THE CHALLENGE

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 diagnosis can be determined much sooner, enabling effective treatments and therapies to slow the disease progression and improve patient survival.

WHAT WE ARE DOING ABOUT IT

The ASB is an initiative focused on educating the medical community, specifically the next generation of doctors during their first/second year of medical school, about this disease through presentations from amyloidosis patients, an educational video, and expert-curated library of excellent presentations. The  medical school curriculum includes an introduction to diseases, although we know the typical education about amyloidosis is minimal, making this the appropriate target audience. In addition, at this point medical students have yet to declare their specialty, thus the ASB can educate future doctors of a wide array of disciplines (e.g., cardiology, ENT, hematology, hepatology, nephrology, neurology, oncology, orthopedics). This is important because amyloidosis has many variations (e.g., AL, AA, ATTR) which present themselves in a variety of ways.

There are over 170 medical schools across the country, each with classes of medical students that typically range from 50 to 250. Every year there is a new class of students for us to inform and educate. So the ultimate goal is staggering. We are super proud that so far in our inaugural year, the ASB has presented to 35 schools and reached over 7,500 students!!

You, too, can support Rare Disease Day and get involved. If you are a patient, perhaps become an ASB speaker. Or, hold a fundraiser where you donate proceeds to your favorite amyloidosis organization. There is much all of us can do.

Thank you for your support,

Mackenzie

2019: A Year of Impact!

Let me begin by saying THANK YOU for supporting Mackenzie’s Mission last year! It’s been a year of impact!

You may have donated cash or an auction item, bought a sponsorship, participated in one of our raising awareness campaigns, or played in our Play FORE The Cure charity golf tournament. You may have been an Amyloidosis Speakers Bureau speaker, donated your time volunteering for the tournament, Liked/Shared our Facebook posts, watched our FACES of Amyloidosis video, participated in our VOICES of Amyloidosis video, 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 2019?

This was our second 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.
  • Support medical research on Amyloidosis, seeking the cause of the disease and more effective treatments to improve and extend lives.

 

Raising Awareness

In February 2019 we launched the Amyloidosis Speakers Bureau (ASB), the cornerstone of our raising awareness effort going forward. Our first year was an exciting one, surpassing our goals which we have summarized in our ASB: 2019 Year-End Review. I hope you will take a few minutes to read the Review and learn about our stunning progress! The ASB is directed by an operating committee of volunteers, the majority of whom are amyloidosis patients. The operating committee oversees the ASB’s program, predominantly the development of the medical school relationships and patient speakers. As ASB’s sponsor, Mackenzie’s Mission provides the operating and legal infrastructure, funding (from fundraisers, donations, and grants), and overall execution of the initiative.

In addition, we were busy launching videos and new blog posts (including those from our guest blogger Lori Grover).

 

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 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.

 

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.

  • Held our second annual Play FORE The Cure golf tournament, our sole fundraising event of the year.

A meaningful percentage of our monies raised (excluding grants) was donated to three world-class research institutions, with the balance supporting the Amyloidosis Speakers Bureau.

  • 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. Ray Comenzo.

 

WHAT ARE OUR GOALS FOR 2020?

Fundraising

  • On August 3, 2020 we will sponsor our third annual Play FORE The Cure charity golf tournament at the prestigious Robert Trent Jones Golf Club in the Washington D.C. area. Mark your calendars and come join us!
  • Solicit donations online, from Facebook fundraisers, and through mailings. Giving Tuesday and year-end giving are the most active times of year.
  • Secure grants to support the Amyloidosis Speakers Bureau.

 

Raising Awareness

  • Focus our energies on the Amyloidosis Speakers Bureau, 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 sizeable proceeds from donations/fundraisers will be key to complement the operational and legal infrastructure required.
  • Develop FACES of Amyloidosis 2020 to celebrate Amyloidosis Awareness Month in March.
  • Continue to publish educational blogs and amyloidosis news.
  • Pursue speaking opportunities, both large and small, spreading the word on the importance of early diagnosis.

 

Supporting Medical Research

  • Donate a meaningful percentage of our 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. More than ever before we are connecting with the amyloidosis community and working together to make an impact. 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 2020,

Mackenzie

 

 

AN UPDATE ON ME

A year ago, in December 2018, I moved back to the Washington D.C. area after finishing a nearly two-year term as a research associate at Harvard Medical School. I learned an incredible amount about scientific research, its value, and the translation of the work back into the clinic. While in Northern Virginia, I have applied to medical school for Fall 2020 and am working through the process. I am very invested in Mackenzie’s Mission and our exciting Amyloidosis Speakers Bureau. I have spoken to students at Mayo Clinic, Tufts University, and University of Illinois, Chicago, and found each to be extraordinarily rewarding. I shadow an orthopedic trauma surgeon at Inova Fairfax Hospital, where I’ve been shadowing on and off for over seven years. In my spare time, I continue coaching youth hockey, something I have come to truly love, and volunteer as a head coach for a U19 girls ice hockey travel team. I am on an immunotherapy regimen to keep my disease at bay and continue to feel great.

ASB: 2019 Year-End Review

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

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

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

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

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

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

    • Reached out to 258 medical schools and student interest groups across the U.S.
      • 50% responded to our inquiries.  Of these,
        • 46% responded with some level of interest,
        • 32% passed us on to a colleague for consideration but never heard from anyone,
        • 9% said their curriculum was full and not open to new additions, and
        • 13% indicated they were not interested.
    • Scheduled 32 presentations, 22 were made in the Fall 2019 and 10 more are on the calendar for Spring 2020.  Another 10 are queued up to be scheduled for Spring 2020. 
      • According to the schools for these 32 presentations, the ASB educational information is estimated to reach around 6,200 students!
    • Names of schools scheduled include:
      • Central Michigan University College of Medicine
      • Cleveland Clinic Lerner College of Medicine
      • Columbia University Vagelos College of Physicians and Surgeons
      • Florida State University College of Medicine
      • Loyola University Chicago Stritch School of Medicine
      • Mayo Clinic Alix School of Medicine, Rochester
      • Mayo Clinic Alix School of Medicine, Scottsdale
      • NYU Grossman School of Medicine
      • Quinnipiac University Frank H Netter MD School of Medicine
      • Stanford University School of Medicine
      • Tufts University School of Medicine
      • University of Arizona College of Medicine, Phoenix
      • University of Colorado School of Medicine
      • University of Connecticut School of Medicine
      • University of Florida College of Medicine
      • University of Illinois College of Medicine, Chicago
      • University of Illinois College of Medicine, Peoria
      • University of Illinois College of Medicine, Rockford
      • University of Iowa Carver School of Medicine
      • University of Kansas School of Medicine, Wichita
      • University of Minnesota Medical School
      • UNLV School of Medicine
      • Virginia Commonwealth University School of Medicine
      • Wayne State University School of Medicine
      • Wright State University Boonshoft School of Medicine

 

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

 

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

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

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

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

 

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

 

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

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

Feedback from students and medical school organizers has been extraordinarily positive. It reinforces to us that the patient stories are a valuable complement to the medical school curriculum, strengthening the learning and deepening the durability for these future doctors about this disease. This is exactly why we do what we do. Here’s a glimpse into what students are telling us.

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

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

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

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

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

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

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

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

 

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

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

With warm regards,

Mackenzie, Charolotte, and Deb

 

Play FORE The Cure 2019

On September 9, 2019 we held our second charity golf tournament Play FORE The Cure. It was a smashing success!

Play FORE The Cure was designed to provide the ultimate player experience, from tip to toe. It was held at the world-class Robert Trent Jones Golf Club (RTJ), just outside of Washington D.C. in Gainesville, VA. RTJ’s PGA instructor Dennis O’Donovan held a golf clinic for the players. Players had a rich gift package, including $200 of Adidas merchandise, Tervis Tumblers, a Mackenzie’s Mission golf towel and RTJ/Mackenzie’s Mission coin ball marker. Fantastic contests with prizes including 5-day cruises and $10,000 cash gave the players plenty of motivation. A silent auction, thoughtfully curated with items including foursomes at courses such as RTJ, Kinloch Golf Club, and RiverBend County Club; golf equipment from Taylor Made; a beautiful handmade mahogany Gentlemen’s watch box; special half-case cabernet sauvignon bottles from Euclid Wines; fine jewelry from Washington Diamond; VIP package from Mecum Auctions; a weekend with a Bentley Bentayga; and a night in the Presidential suite at Ritz-Carlton added to the success. The evening program, emceed by my father Mark, included my keynote speech, where I shared the background behind Play FORE The Cure and why it’s so important.

The objective of the fundraiser was two-fold:

  • Support the newly launched Amyloidosis Speakers Bureau, focused on educating future doctors during their first/second year of medical school; and
  • Support research at multiple leading amyloidosis research institutions.

Raising money is central to every fundraiser. We maximized the monies raised through player registrations, sponsorships, donations, silent auction, 50/50 raffle, and mulligans. We amplified the net proceeds through the judicious management of expenses and generous donations of items and services.

In the end, we raised over $163,000!!!!

In addition, our efforts to raise awareness about amyloidosis took shape through easy-to-read pamphlets in player and volunteer gift bags (thank you Muriel and the Amyloidosis Support Groups!), and sharing the story of my journey and the disease. Over 80 people have now been introduced to amyloidosis, a rare and incurable disease.

We are grateful for the contributions of our supporters, which include sponsors, auction donors, cash donors, and wonderful volunteers. We are also particularly appreciative of the support from local amyloidosis patients, offering their time and involvement to ensure success! Thanks to RTJ for hosting us at your beautiful world-class venue, and of course, a big thank you to our players who enjoyed the full day of activities!

We look forward to seeing you next year, and thank you everyone for your support.

With my warmest regards,

Mackenzie

 

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

DOCTORS of Amyloidosis

Twelve of the most notable experts in the fight against this disease share, in their own unedited words, their views on the state of the disease. They voice what patients and the medical community need to do to push forward, and what lies ahead in the pipeline of potential treatment.

This unparalleled collection of messages from leading experts is a priceless read to understand the disease both today, and tomorrow.

We thank them for their words, and the passion and care they bring to their patients, in the fight against amyloidosis.

Thank you for taking the time to watch and read their stories.

Mackenzie

P.S. You can view the video, or for those preferring a larger font for easier reading, we have provided a transcript for download as well.

DOCTORS of Amyloidosis transcript (download)

 

 

 

 

VOICES of Amyloidosis

According to the Mayo Clinic, Amyloidosis is a rare disease that occurs when a substance called amyloid builds up in your organs. Amyloid is an abnormal protein that is produced in your bone marrow and can be deposited in any tissue or organ. Amyloidosis can affect different organs in different people, and there are different types of amyloid. This disease frequently affects the heart, kidneys, liver, spleen, nervous system and digestive tract. Severe amyloidosis can lead to life-threatening organ failure.

VOICES of Amyloidosis is a five-part campaign intended to give voice to those impacted by the disease. Each person in VOICES, which includes patients, caregivers, and expert doctors, has a story to tell in their own unedited words. You will feel their emotions and share their hope for the future.

Thank you for reading and sharing far and wide, as the more people that know about this disease, the better the odds are to advance the timing of diagnosis, find answers for improved treatments, and ultimately develop a cure.

This is their message.

Please scroll down to see each of the five videos.

Part 1 of 5

Part 2 of 5

 

Part 3 of 5

Part 4 of 5

 

Part 5 of 5

 

2018: Thanks for a Great Year!

Thank you for your support in 2018!

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

You may have donated cash or an auction item, bought a sponsorship, participated in one of our raising awareness campaigns, or played in our Play FORE The Cure charity golf tournament. You may have donated your time volunteering for the tournament, 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 thank you.

How Did We Do In 2018?

This was our first 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 worked to make a difference in two ways.

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

Raising Awareness

The feedback I have received from this outreach has been both touching and heartwarming. While being an inspiration to others is wonderful, I am most moved by the conversations I 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.

Supporting Medical Research

As I 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.

  • Held our first annual Play FORE The Cure golf tournament
  • Raised Over $164,000!  Donated 100% of all donations and net tournament proceeds to the Mayo Clinic’s Amyloidosis Research Fund. According to Dr. Morie Gertz at the Mayo Clinic, our monies go towards activities including:
    • Outcomes research.
    • Clinical trials research.
    • Valuable tissue repository and cell bank, where serum and cells from thousands of amyloid patients can be used for research as new understanding comes forward.
    • Sixteen (16) research publications from Mayo’s amyloid research group published in 2018.
    • Supporting one clinical trial coordinator and one research fellow for one year.

What Are Our Goals For 2019?

Raising Awareness

  • Launch VOICES of Amyloidosis, our second major campaign. This project, with submission from patients, caregivers, and expert physicians, will be a series of videos conveying what they want the public to know about amyloidosis and how this disease has affected their life. VOICES of Amyloidosis promises to be moving and informational.
  • Continue to publish educational blogs and amyloidosis news.
  • Pursue speaking opportunities, both large and small, spreading the word on the importance of early diagnosis.

Supporting Medical Research

  • On September 9, 2019 we will sponsor our second annual Play FORE The Cure charity golf tournament at the prestigious Robert Trent Jones Golf Club in the Washington D.C. area.  Mark your calendars and come join us!
  • Raise $175,000. We hope we can count on your continued support!
  • Donate 100% of our donations and net tournament proceeds to the Mayo Clinic’s Amyloidosis Research Fund, one of the worldwide leaders in research to understand the disease, develop improved therapies to treat and potentially reverse the damage of the disease, and ultimately find a cure. We are fortunate to have a benefactor paying 100% of our operational expenses, which enables us to maximize your donated dollars.

I am encouraged by the impact Mackenzie’s Mission is already making. There is much work to be done, but with your help I know we can win this fight!

 

An Update On Me

In December 2018, I moved back to the Washington D.C. area after finishing a nearly two-year term as a research associate at Harvard Medical School. I learned an incredible amount about scientific research, its value, and the translation of the work back into the clinic. It has continued to energize me as I prepare to apply to medical school in the coming year. While in Northern Virginia, I shadow an orthopedic trauma surgeon at Inova Fairfax Hospital, where I’ve been shadowing on and off for over six years. In my spare time, I continue coaching youth hockey, something I have come to truly love, and volunteer as an assistant coach for a U14 girls ice hockey team. I continue to feel great and remain disease free.

With warm regards for a wonderful 2019,

Mackenzie

 

Play FORE The Cure 2018

On August 6, 2018 we held our first charity golf tournament Play FORE The Cure. It was a smashing success!

Play FORE The Cure was designed to provide the ultimate player experience, from tip to toe. It was held at the world-class Robert Trent Jones Golf Club, just outside of Washington D.C. in Gainesville, VA. Renown PGA Tour Professional and Maryland native Fred Funk joined the event, playing a hole with every foursome and conducted a short game clinic for the players. Callaway brought their latest clubs for the players to test on the range, and take home a custom-fit Callaway wedge as one of their gifts. Fantastic contests with prizes including 5-day cruises, $10,000 cash, $50,000 cash, $100,000 cash and a 2018 Audi Q5 gave the players plenty of motivation. We invite you to view hundreds of great photos on our photo sharing site. A silent auction, thoughtfully curated with items including a beautiful handmade mahogany Gentlemen’s jewelry box, special six-bottle vertical cabernet sauvignon from Euclid Wines, 7-day Italian culinary experience for ten at a Tuscan villa, fine jewelry, memorabilia from the 2018 Stanley Cup Champion Washington Capitals, and a night in the Presidential suite at Ritz-Carlton added to the success. The evening program, emceed by my father Mark, included my keynote speech (see below), where I shared the background behind Play FORE The Cure and why it’s so important.

The objective of the fundraiser was two-fold:

  • Raise Money
  • Raise Awareness

Raising money is central to every fundraiser. We maximized the monies raised through player registrations, sponsorships, donations, silent auction, 50/50 raffle, and mulligans. We amplified the net proceeds through the judicious management of expenses and generous donations of items and services.

In the end, we raised over $135,000 for Mackenzie’s Mission!!!!

Net proceeds will be donated to the Amyloidosis Research Fund at the Mayo Clinic, one of the Centers of Excellence for this disease.

In addition, our efforts to raise awareness about amyloidosis took shape through easy-to-read pamphlets in player and volunteer gift bags, our FACES of Amyloidosis video, and sharing the story of my journey and the disease. Over 80 people have now been introduced to amyloidosis, a rare and incurable disease.

We are grateful for the contributions of our supporters, which include sponsors, auction donors, cash donors, and wonderful volunteers. Our Thank You Supporters! video highlights the names and logos of these individuals and organizations, and we invite you to take a few minutes to view the extensive list. And of course, a big thank you to our players who enjoyed the full day of activities!

We look forward to seeing you next year.

With my warmest regards,

Mackenzie

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