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amyloidosis

2020: The Year of the Pivot

January 01, 2021

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.

 

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