Let us begin by saying we are super grateful for our growing list of supporters, many of whom are becoming repeat 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 2022?
This was our fifth full year of operation (shocking how fast time passes), 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.
Amyloidosis Speakers Bureau (ASB): Since launching the Amyloidosis Speakers Bureau in February 2019, the ASB is front and center for 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 information mailing. Our target audience is the next generation of doctors during their first/second year of medical school, as well as internal medicine residency programs for physicians beginning their career post-medical school.
During 2022, we saw presentations exceed our target, and in-person events slowly returning. With our target set at 65 presentations, we were pleased to close the year at 68 presentations to more than 3,500 medical students and resident physicians. We’re also excited to say we surpassed a massive milestone this year — since we started, we have now given over 215 presentations to more than 10,000 medical students and residents!!
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 of George Mason University, along with Dr. Adebanke Adebayo of Washburn University and expert medical advisor Dr. Vaishali Sanchorawala of Boston University, we designed and launched a study in 2021. Our study explored responses across four variables:
And patient/physician communication
We randomly formed two groups from over 250 respondents: half that had not seen an ASB presentation, and half that had. In analyzing the data, the results were striking. The data shows higher significant mean differences (where the p value < .05) between these two groups. We also found that those who heard the presentation had nearly unanimous agreement about their experience regarding speaker effectiveness and finding value from the ASB presentation. So yes, we do believe the evidence indicates we are making a difference. YAY!
Our manuscript has been submitted for publication consideration with Medical Teacher, an international journal of education in the health sciences.
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 600! 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.
Conferences: Chaired by Dr. Vaishali Sanchorawala, we spoke on a panel at the recent International Society of Amyloidosis (ISA) in Heidelberg, Germany. Our presentation was titled “Patients are Powerful Educators,” introducing the ASB and our focus on educating medical students. We received strong positive feedback from attendees around the world, showcasing how patients can contribute to raising awareness about this disease.
Mailings, Social Media & Miscellaneous: We spread this information across our platform which includes: our website, our mailing lists, our Facebook page, our LinkedIn page, our new Twitter account (@Amyloidosis_ASB), and our YouTube channel. We welcome you following us on any of these platforms.
SUPPORTING MEDICAL RESEARCH
As we have said over and over, nothing happens in research without money. And knowing the NIH 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. It’s a competitive 24-player Presidents Cup format at the Robert Trent Jones Golf Club, with two teams of twelve competing for the title. We’re proud to say the event this year raised over $150,000, bringing our cumulative total raise from our Play FORE The Cure tournaments to over $830,000!
To help advance medical research we donated to five 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
- Cleveland Clinic Foundation’s Amyloidosis Research & Education Fund
WHAT ARE OUR GOALS FOR 2023?
In short, to keep doing what we are doing, and do more of it.
- Focus our energies on the Amyloidosis Speakers Bureau (ASB), expanding our medical school and residency program outreach. This is where we believe we can make the biggest impact from our efforts. Engagement from the amyloidosis patient community, securing meaningful grant support, and proceeds from donations/fundraisers will be key to complement the operational and legal infrastructure required.
- 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
- From our general donations and charity golf tournament proceeds we support 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 2023,
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 busy in the midst of my first year of graduate school at Northeastern University, studying to be a Physician Assistant. I’m so proud of what we’ve accomplished and am excited about what lies ahead. Many thanks and appreciation to all of our speakers and volunteers who work passionately to keep advancing our efforts. As for my disease, I am on a regimen that keeps my disease under control, and I continue to feel great.