Celebrating a Warrior, Partner, and Friend – Charolotte Raymond
Our first communication with Charolotte was Fall 2018. Since 2017, after giving a presentation to the medical students of Dr. Gordon Huggins at Tufts University School of Medicine, she developed this vision for a speakers bureau and was looking for a group to partner with that could bring the infrastructure and financial support to life. After knocking on a few doors, Muriel Finkel of the Amyloidosis Support Groups suggested she knock on ours – Mackenzie’s Mission.
At the same time, Mackenzie’s Mission, founded a year earlier, was still searching for that right “raising awareness” initiative. At the onset we went for public social medial posts and website blogs, but we quickly knew that random and public outreach wouldn’t been effective on our small scale. A public onslaught for awareness required a massive media platform and lots of money, or a lucky viral campaign like ALS’ Ice Bucket Challenge. Neither felt attainable. Mackenzie wanted an initiative that was targeted and focused, and aimed at a segment that could make a difference.
Charolotte’s first email to us in August 2018 began, “I have been building a team of speakers to go to medical schools and talk about their experiences with Amyloidosis. It is an idea I wanted to discuss with you. I like that you are not sitting back, that you are truly proactive!! It is people like you that are going to be changing the face of this illness!”
Next was a call where Charolotte described her vision. Mackenzie responded with the most enthusiastic, “YES, we have to do this.” For her, it was the moment of clarity on her dreams to raise awareness. The concept was simple – focus on the pipeline of future doctors, educating them through patient stories. Brilliant. It brought a complement to the often scant discussion of amyloidosis in curriculums, an emotional element to see, hear and better understand the patient perspective, and opportunity reach a multitude of specialties before they declare their path, all in one place.
In the ensuing months in between her treatments, we had extensive conversations — about everything and anything. Ranging from big concepts like operating structure and roles/responsibilities to execution details like priorities, funding and resources. We were aligned on some thoughts, and unsure about others. We knew Mackenzie’s Mission could bring the legal platform, and operationally had the ability to bring this to life. There was one growing reality emerging through all of this – we were 100% aligned on the vision and simply enjoyed each other with positivity, laughter, and a rapidly developing respect for everyone’s views and opinions. Our triumvirate was diverse by disease, age, and experience. Together, it pointed to a powerful collaboration of effectiveness and efficiency, while having fun along the way.
By January, 2019 we felt we had the framework for Charolotte’s initial vision, shaped and re-shaped to execute. Thus on February 1, 2019, the Amyloidosis Speakers Bureau was launched. We spent the next handful of months laying the foundation – website, materials, and recruiting a wonderful group of speakers. In addition, we established a group of advisors — renown amyloidosis experts and key community leaders — that brought credibility, support, and respect for our initiative.
Our first school year – Fall 2019 to Spring 2020 we held 44 presentations. Interrupted by the global COVID pandemic, we re-tooled from being in-person to virtual. Our offering was now broader, more robust and flexible. We learned so much and were always willing to pivot, a mindset which had us always looking forward, listening for feedback, and never forgetting our focused mission.
Today, in the Spring of 2021 and a few months away from concluding our second school year, have booked 61 presentations with a pipeline of a half dozen more to schedule. We have about 40 speakers, diverse by disease type, experience, and organ involvement. They are the centerpiece of our initiative and we thank them dearly for being a part of the ASB. We have presented to over 5,000 medical students, and information about amyloidosis has reached over 30,000 medical students — all in just our first two years.
As Charolotte’s health ebbed and flowed, we saw her fierce love of life and willingness to battle back this disease. She never gave up and never wavered in her happiness seeing her vision make a difference in the amyloidosis community. Thanks to our Zoom world, she often was able to join school presentations and see the fruits of our labor in action. We know it brought her great pride and joy. She is survived by her beloved husband Robert N. Raymond of Delray Beach, Florida; daughters Kristen Weatherbee Smith of Delray Beach, Florida; Sherry and husband Robert Ortiz of Rochester; sons Eric and wife Kathleen of Rochester, Roderick of Somersworth; grandchildren Sean, Melissa, Kaylah, Katelyn, Lettie, Brennan, Zoe, Isabella, Alexander, great grandchildren Rylee, Finley and many extended family, and countless special friends.
The Amyloidosis Speakers Bureau will forever be a lasting legacy that always remembers Charolotte.
xoxo Charolotte. We love you, Mackenzie and Deb
