This was our seventh full year of operation. We were busy 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 multiple ways.
- Raising Awareness about Amyloidosis, which we know can lead to earlier diagnosis, starting treatments sooner, and better outcomes for patients.
- Supporting medical research on Amyloidosis, seeking to understand more, develop better and less invasive diagnostic approaches, and develop more effective treatments, all of which will improve and extend lives.
RAISING AWARENESS
The first part of our mission is raising awareness, for both patients and the medical community.
Amyloidosis Speakers Bureau (ASB)
Back in February 2019 we launched the Amyloidosis Speakers Bureau as the cornerstone of our education effort, focused on closing the medical education gap. It is a direct outreach with live presentations by patient educators, done both virtually and in-person. In addition, each presentation has a clinical discussion about amyloidosis. Thus overall, every presentation has well-rounded and impactful content to educate the audience.
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 continues to progress. Until a cure is found, it is imperative to raise awareness within the medical community to close this educational gap 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 and closing the education gap about this disease through presentations from amyloidosis patients, a clinical discussion from a medical expert, and our monthly educational updates. Our target audience is future providers (e.g., the next generation of doctors during their first/second year of medical school, and PA students), as well as current medical providers (e.g., internal medicine residency programs for physicians launching their medical career).
During 2024, we gave 86 presentations to over 5,100 future and current medical providers. Since we began in the fall of 2019, we have given over 375 presentations to over 19,500 future and current medical providers! We also are proud to be educating a wide array of specialties who might encounter amyloidosis patients, and every year another medical school cohort graduates – numbering 3,000+, entering the clinical world of practicing medicine and diagnosing patients. Our impact is deepening and continuing to grow.
Amyloidosis Lecture Series
Launched late 2023, we created a lecture series of Expert Insights Into Amyloidosis composed of short educational videos from our ASB Advisors. Developed for our medical student/resident audience, we have found that our patient community is also finding value in these videos. These 10-15 minute videos have thus far proven to be a massive hit. We continue to add to the series at least monthly, and collectively, these videos have amassed over 75,000 views. Shockingly awesome! To view, visit the Education hub of our new website and click on the “Expert Insights” category.
All Things Amyloid podcast
On October 30, 2024 we launched the first dedicated amyloidosis podcast titled “All Things Amyloid.” Found on major podcast platforms, our website, and our YouTube channel, in our episodes we speak with patients and caregivers on a wide array of topics. We also hear from amyloidosis experts about the medical side of this disease. These are short episodes with bi-weekly drops, our initial seven episodes have amassed over 2,100 downloads! To listen to our episodes, visit our podcast website HERE.
Digital Education Initiative
Knowing the critical importance of raising awareness of this disease, it became evident to us that it was a good time to launch a digital initiative to far extend our reach. On June 1, 2024 we launched a targeted educational initiative on our three social media platforms (Facebook, LinkedIn, and X), and a Google search program. Focused topics include cardiac symptoms, west african heritage, extreme fatigue, and carpal tunnel syndrome. After our first six months we have garnered over 14.4 million impressions!
Continuing Medical Student Education: After every presentation we invite students interested in continuing to learn about amyloidosis to join our ASB Briefs mailing list. Today, that list numbers over 1,000! 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.
ADVANCING MEDICAL RESEARCH
The second part of our mission is to help advance research. Research is at the core of developing new therapies to improve patient lives. Patients benefit from research through early access to novel therapies, new tests for earlier/easier diagnosis, and new approved treatments. However, research is expensive, takes many years, and is absolutely critical to the deepening of knowledge fueling these advancements. And while significant progress continues to be made, much more needs to be done.
No progress in the fight against this disease happens without funding, and the NIH provides a mere fraction of what is needed. Researchers require money to run their labs, maintain bio banks, purchase equipment, run clinical trials, and more. To operate, they rely on private foundations (like Mackenzie’s Mission), grants, and individual donors.
Each year, a portion of our budget goes towards advancing research. We are grateful for the support received from donors like you and fundraisers, and proud that collectively these funds are changing the therapeutic landscape and benefiting patients.
In 2024, our donations pushed us over the $1,500,000 threshold for total money donated!
WITH MUCH APPRECIATION AND GRATITUDE
This past year you may have donated cash or securities, sponsored a Facebook fundraiser, supported us during Giving Tuesday, or given us a grant to support our Amyloidosis Speakers Bureau (ASB) medical education initiative. You may have been an ASB patient educator, liked/shared our social media posts, been a guest on or subscribed to our All Things Amyloid podcast, or taken the time to read our posts or newsletter to learn about what’s going on in our community. Whether you did one or many of these, 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 (including Linda, Liz, Kathy, Sean, Rayna, Trent, and others!) who passionately and graciously devote their time and expertise. They help our efforts across many aspects of our operations, from management, to speaker development, to research, to graphics/marketing, and video production. Their dedication to our effort is a testament to their belief in what we are doing and we thank them all!
I am encouraged by the impact Mackenzie’s Mission continues to make after just seven 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 2025,
Mackenzie
AN UPDATE ON ME
This past year was a busy one! Mackenzie’s Mission and the Amyloidosis Speakers Bureau accomplished many important projects, laying the foundation for an exciting future. Outside of the foundation, I am now a PA-C, having graduated from the Physician Assistant Program at Northeastern University. Starting March 2025, I will be working as an Inpatient Physician Assistant at Dana-Farber Cancer Institute in Boston. As for my disease, I am monitored closely, and my disease continues to remain under control. I feel great!
