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.
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).
- Launched VOICES of Amyloidosis, a five-part video giving voice to those affected by this disease, whether patient, caregiver, or healthcare professional.
- Launched DOCTORS of Amyloidosis, sharing the candid views from expert medical professionals of the state of the disease.
- Launched 60 VOICES in 60 DAYS, posting daily excerpts from our VOICES of Amyloidosis video.
- Listed in NORD’s Organizational Database for amyloidosis
- Joined Global Genes Foundation Alliance. By becoming a RARE Foundation Alliance member, committing to collaborating with Global Genes and other nonprofit foundations in order to create a stronger, collective voice in the rare disease community.
- Published blogs, many from our guest blogger Lori Grover, on topics such as:
- Conducted informal surveys about the disease:
- We spread this information across our platform which includes:
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?
- 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.
- 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,
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.