Rare Leader: Michael Goldberg, Co-Founder, Hugs for Mito
September 13, 2018
Name: Michael Goldberg
Organization: Hugs for Mito
Disease focus: The organization focuses on mitochondrial diseases and rare disease. Mitochondrial disease result from failures of the mitochondria, specialized compartments that are present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90 percent of the energy needed by the body to sustain life and support growth. When mitochondria fail, less and less energy is generated within the cell. Cell injury and even cell death can follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the individual in whom this is happening is severely compromised. The disease predominantly affects children, but adult onset in becoming more and more common.
Headquarters: South Easton, Massachusetts
How did you become involved in rare disease: I have mitochondrial disease. I was diagnosed in December 2014. I was experiencing symptoms going back to 2011, but my journey to getting diagnosed took more than three years.
Previous career: I’ve had a number of careers. I was in the internet and computer industry for quite some time. I was in the security industry and I’m still a master of fitness science, honoree certified with the International Sports Sciences Association.
Education: I have a bachelor’s degree in marketing from Southeastern Massachusetts University in North Dartmouth, Massachusetts (now UMass Dartmouth).
Organization’s mandate: Hugs for Mito engages in mitochondrial disease and rare disease advocacy, awareness, and fundraising for research, trials, and hopefully a cure.
Organization’s strategy: We want to see the mitochondrial disease and rare disease communities get well. We do that through fundraising events, social media, and other events.
Funding strategy: To be out there and active as much as we can. We raise money through events, social media, tee shirt and sweatshirt sales, our book, I’ll Have Mine Rare and good old-fashioned hard work.
What’s changing at your organization in the next year: We’re doing more events than we ever have. We’re hoping to add a walk and run, which we’ve never done before. It will be a tremendous undertaking but something we’d really love to do.
Management philosophy: My background is in marketing and management. It takes a village, and I realize that. We have some incredible volunteers that help us on a continued basis. They all pitch-in, in tremendous ways. We could never repay that gratitude. We never have to motivate them. By seeing me, and others with mitochondrial disease and rare disease (especially the children) and the challenges we face daily, that’s plenty of motivation. They’re always willing to do something. We’re extremely fortunate to have such incredible human beings in our lives.
Guiding principles for running an effective organization: It’s all in the people you surround yourself with and the customer service you provide. My wife Judi is really a driving force behind the scenes. She’s the motor that makes Hugs for Mito run. Juggernaut Judi, I say that in the most loving way.
Best way to keep your organization relevant: Be out there, visible and active. We have a huge social media presence. If I put a post out there, I make it my business to respond to every person who comments on it. That takes a lot of my time and energy, but you have to treat people the way that you want to be treated and offer the best customer service possible, even as a nonprofit charity. It may be old-school, but it works for us.
Why people like working for you: I’m caring, kind, compassionate, considerate, honest and even-keeled. I like to have fun. I’m motivated, and I truly care about everyone’s well-being. I’ve had various jobs in my 53 years. I’ve really found my passion and calling in rare disease. I love what I do right now, helping people. I want to see my communities—people with mitochondrial disease—people with any rare disease, especially children, get well. That’s where my passion lies.
Mentor: I have a lot of mentors. My mother and father. I love them both dearly. I lost my father in April 2017. But, he and my mother always conducted their business with grace and class. A very good friend of mine, Jack Barnathan, is a mentor and teacher. He’s a consultant, lecturer, and strategist. He’s worked with presidents and Olympic gold medalists. I find him to be an extremely educated man. I mentioned earlier that I was a master of fitness science, honoree. I’m also a March 2018 Arnold Schwarzenegger VIP Panelist and owe that to Jack. I’ve been attending NY Strength Lifestyle Design & Meal Design Seminars for 20 plus years now. I refer to Jack and his network (my colleagues) as family. They’re some of the brightest minds and best of the best professionals in their respected disciplines (from all walks of life). They’ve all helped us with Hugs for Mito and our upward trajectory.
On the Job
What inspires you: The people in the mitochondrial disease and rare disease communities who are ill—the people I work for, especially the children. I adore the children and have a real soft spot for them. They’re my inspiration. They inspire me every day.
What makes you hopeful: A cure, trials, and research make me hopeful. My mitochondrial disease doctor just published a paper on pregnant women and mitochondrial disease. Our fundraising directly contributed to that research. That’s extremely exciting to me. That’s thrilling to me. That’s what it’s all about. Amel Karaa is a Massachusetts General Hospital-affiliated doctor and we support her efforts. She’s a brilliant researcher and geneticist.
Best organization decision: To get involved and active. To do what we’re doing. To become a 501(C)(3). That’s the best decision we ever made.
Hardest lesson learned: The hardest lesson learned is to sit back and listen—really understand what the community wants. Sometimes you have to consider the needs of a group as opposed to a single individual. That’s when it gets dicey and difficult.
Toughest organization decision: When to cut certain ties—those are always difficult decisions. You never want to do that, but, you have to do what’s best for the organization.
Biggest missed opportunity: I can’t say that we’ve missed any to this point. We’ve seized the day and every opportunity. We’re pleased.
Like best about the job: I feel like I’m giving something back, which I haven’t felt in other jobs I’ve had. A real sense of accomplishment. I don’t take a salary. Everything we fundraise for goes back to mitochondrial disease and rare disease.
Like least about the job: It’s time consuming. It’s a full-time job. I answer every e-mail and instant messages. I maintain our website on my own. It takes a lot of time, sometimes at the expense of my own health.
Pet peeve: When I’ve done a lot of grunt work and an individual supports one of the larger organizations that does the same advocacy work that we do, and their donation goes to support that other organization. What can you do? It’s all going to the same great cause.
First choice for a new career: If I could, I would do something in law enforcement.
Most influential book: I’ll Have Mine Rare, by Michael Goldberg. It’s a children’s book I wrote about mitochondrial disease and rare disease. It’s about fitting in and feeling accepted. All proceeds go back to mitochondrial disease and rare disease.
Favorite movie: Brian’s Song
Favorite music: I like soft rock, country, rock—I like all genres.
Favorite food: I like Chinese, Italian, Mexican, Jewish Food—I like them all.
Guilty pleasure: Chocolate and ice cream.
Favorite way to spend free time: Travelling when I can
September 13, 2018
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