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.
- Launched FACES of Amyloidosis video, seeking to humanize this disease and illustrate the diversity of those affected. We are proud to say it’s been seen by thousands!
- Profiled my journey in Be The Match: Blood & Marrow Transplant Journeys (p42-43, and p146)
- Educated and informed the public on a wide array of topics such as:
- Clinical Trials 101
- ICD Diagnosis Codes
- Building a Caregiver Team
- Rebuilding the Immune System
- Diagnosing Amyloidosis
- Transplant: Inpatient vs. Outpatient
- The Role of a Caregiver
- What it’s Like to Lose Your Hair
- Rare Disease Day
- We spread this information across our platform which includes:
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?
- 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,