RARE Daily

Rare Leader: Mary O’Donnell, President, Amyloidosis Foundation

June 11, 2020

The Basics
Name: Mary O’Donnell

Title: President

Organization: Amyloidosis Foundation

Social Media Links:

Disease focus:  Amyloidosis is a term that represents several different types of diseases where an abnormal protein called amyloid is produced. These amyloid protein fibers can attach and deposit into organs, tissues, nerves and other places in the body. When that happens, normal function of the area can be affected. As the amyloid protein increases, health problems and organ damage may occur. “Osis” means increased, or an abnormal, supply of amyloid protein. When amyloid clusters together, it can be in several places in the body at the same time. This is called systemic. If it gathers in one specific area of the body only, it is called localized.

Headquarters: Clarkston, Michigan

How did you become involved in rare disease: My husband was diagnosed with the light chain form of the disease in 2002. In 2003, he and I established the foundation. Unfortunately, we lost him to the disease in 2004.  

Education: BS in engineering from the University of Toledo

The Organization
Organization’s mandate: Our mandate is to support and help patients and promote research, education, and awareness of the disease.

Organization’s strategy: We exhibit at medical conferences to raise awareness among the medical community. We have the website to provide information to patients and their families. We also get quite a few emails and phone calls from patients, who are looking for information, not only about the disease, but where they can go to obtain adequate treatment. It’s a hands-on effort on our part, both within the medical community and the patient community.

Funding strategy: We do mail campaigns and fundraisers. We have a lot of volunteer fundraisers, where family members will do a Facebook fundraiser for us. We also submit grant applications to the pharmaceutical companies.

What’s changing at your organization in the next year: That was a conversation we had at our last board meeting. With the unknown of COVID-19, we made the decision to stay in a holding pattern until we figured out what what’s going on. It is starting to become a little bit clearer, but for right now, it’s status quo.

Management Style
Management philosophy: I’m a hands-off manager. I assign tasks, but let employees find their way from point A to point B. I’m always here to step in and help if they need it. But I feel it’s important that the person takes ownership of the task and the project and determines the best method to come up with the solution.

Guiding principles for running an effective organization: Let your staff use their skills.

Best way to keep your organization relevant: We always make sure that we are up to date on all the current information about the medical treatment and research that’s been accomplished, and what drugs have been approved or are in clinical trials. We try to stay on top of all that so we’re providing the most accurate information.

Why people like working with you: Because I let them do their job. I don’t butt in. I tell them what needs to be accomplished and when it needs to be accomplished. And only step in when I see something not going right.

Mentor: When I was younger, I’d say something. But as I’m older, I don’t think I really have one. I have people that I rely on to bounce ideas off, but that’s quite a few people.

On the Job
What inspires you: Helping people.

What makes you hopeful: The fact that we have extremely dedicated physicians and researchers looking into amyloidosis, why it happens, and helping with the development of drugs via clinical trials.  It’s an amazing community of physicians and researchers.

Best organization decision: I think the best decision was when my husband and I decided to develop and create the foundation 16 years ago.

Hardest lesson learned: Getting an engineer to understand accounting systems. 

Toughest organization decision: The toughest thing is when I am trying to fill a position—finding the right person, not only with the proper skill set, but with the right personality to deal with patients and   fit into our organization. It’s not the easiest thing to do to find the right people to fill the slots.

Biggest missed opportunity: Early on, we were running the foundation out of our kitchen. Because I was working full-time, it took several years before we were in a position to issue research grants, which was one of our primary goals when we established the foundation. But after three or four years, things started to roll a little bit. A year or so after my husband died, I made the conscious decision to give up my previous career so I could work full time on the foundation, which allowed it to grow.

Like best about the job: Helping people

Like least about the job: Working with accountants

Pet peeve: From a management standpoint, my pet peeve is when people don’t ask for help when they really should.

First choice for a new career: Retirement. If I had to pick a future career I’d go back to construction. I loved it.

Personal Taste
Most influential book: Once I graduated from college, I vowed I was never going to read anything intense again in my life. Engineering books aren’t terribly exciting. In high school, I remember writing a term paper on The Great Gatsby by F. Scott Fitzgerald. I don’t know whether it was influential, but it was entertaining.

Favorite movie: I always like Robin Williams movies.

Favorite music: Light rock, little bit of country

Favorite food: Seafood

Guilty pleasure: Crab legs

Favorite way to spend free time: Gardening and enjoying the outdoors.

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