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Amy Gray On How To Leave a Lasting Legacy With a Successful & Effective Nonprofit Organization

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You need to be laser focused on your mission. In 2008, when the CMTA launched our Strategy to Accelerate Research, no pharmaceutical or biotech companies were developing treatments for CMT. By remaining focused on the steps we needed to take to change that, I have worked with our team to recruit more than 40 leading research labs, pharmaceutical and biotech companies to the space over the past five years and have companies in clinical trials.


For someone who wants to set aside money to establish a Philanthropic Foundation or Fund, what does it take to make sure your resources are being impactful and truly effective? In this interview series, called “How To Create Philanthropy That Leaves a Lasting Legacy” we are visiting with founders of Philanthropic Foundations, Charitable Organizations, and Non Profit Organizations, to talk about the steps they took to create sustainable success.

As a part of this series, I had the pleasure of interviewing Amy Gray.

Amy Gray is the Chief Executive Officer of the Charcot-Marie-Tooth Association (CMTA), the largest philanthropic funder of research for Charcot-Marie-Tooth disease. Ms. Gray has more than 20 years of experience working in philanthropy in the health care sector, holding leadership positions at the Muscular Dystrophy Association, Crohn’s and Colitis Foundation and Parkinson’s Foundation. For the past five years, she has been instrumental in growing the CMTA’s capacity to accelerate research and providing critical support to patients and families living with CMT.


Thank you for making time to visit with us about a ‘top of mind’ topic. Our readers would like to get to know you a bit better. Can you please tell us about one or two life experiences that most shaped who you are today?

Growing up, my family volunteered and supported local charities in our community. I started “fundraising” at a young age, participating in my Catholic school’s magazine drive, going door to door selling magazine subscriptions as a fundraiser. I never imagined going into philanthropy as a career; I didn’t even know it was an option when I graduated college but am so thankful the stars have aligned in this way.

You are a successful leader. Which three character traits do you think were most instrumental to your success? We would love to hear a few stories or examples.

I believe integrity is at the core of every great leader. Being trustworthy, especially in philanthropy, is very important. You need to earn the trust of your staff, board, community members and donors to be successful.

I also believe great leaders learn what they are good at and what they are not good at and surround themselves with teammates that complement their weaknesses. This is something I am still working on; however, it has been instrumental in my professional growth!

Great leaders work with their teams to innovate and make the most of the resources they have. The CMTA was just awarded a Perfect 100 score by Charity Navigator for our excellence in financial accountability and governance. Less than 1 percent of nonprofit organizations that are rated by Charity Navigator receive this designation, so it is a very big deal and something I am extremely proud of!

What’s the most interesting discovery you’ve made since you started leading your organization?

The rare disease community is incredible! The involvement of CMT patients, family members and caregivers fuel our organization. By engaging the community as volunteers and ambassadors, the CMTA has been able to operate like a 20 million dollars organization on the budget of a 5 million dollars organization, ensuring that we can direct 90 cents per dollar raised to fund our mission.

Can you please tell our readers more about how you or your organization intends to make a significant social impact?

Charcot-Marie-Tooth (CMT) is a degenerative neuromuscular disease that damages the long nerves to the hands and feet, causing the surrounding muscles to atrophy. Some 3 million people worldwide are affected. As the largest charitable funder of CMT research, we are working towards a world without CMT. Through our Strategy to Accelerate Research (STAR), the CMTA is currently partnering with more than 40 of the leading research labs, and biotech and pharmaceutical companies to develop treatments and a cure.

What makes you feel passionate about this cause more than any other?

The CMT community as a whole, especially our Youth Council. The Youth Council is connecting youth living with CMT around the globe, something incredibly important with a rare disease like CMT. Many youth have never met anyone outside of their family with CMT. They are now making lasting friendships through the CMTA’s youth programs, including Camp Footprint, the only camp in the United States just for kids with CMT.

Without naming names, could you share a story about an individual who benefitted from your initiatives?

Every summer, we hold a six-day sleepaway camp for youth (ages 10–18) with CMT. The CMTA’s Camp Footprint is the only camp in the United States just for kids with CMT. Camp Footprint envisions a world where children with CMT are empowered with the courage, hope, skills, and community for a lifelong journey of realizing potential and developing strengths. We have averaged around 100 kids and 50 volunteer counselors the past couple years. There are so many stories of kids attending camp for the first time never having met another kid with CMT and coming out of camp with lifelong friendships!

We all want to help and to live a life of purpose. What are three actions anyone could take to help address the root cause of the problem you’re trying to solve?

  • Volunteer your time and talents.
  • Spread awareness through social media. Like our pages and engage with our content!
  • Donate! We are the only 4 STAR rated CMT charity rated by Charity Navigator, recently earning a Perfect 100 score for our excellence in financial accountability and governance practices!

Based on your experience, what are the “5 Things You Need to Create a Successful & Effective Nonprofit That Leaves a Lasting Legacy?” Please share a story or example for each.

You need to be laser focused on your mission. In 2008, when the CMTA launched our Strategy to Accelerate Research, no pharmaceutical or biotech companies were developing treatments for CMT. By remaining focused on the steps we needed to take to change that, I have worked with our team to recruit more than 40 leading research labs, pharmaceutical and biotech companies to the space over the past five years and have companies in clinical trials.

You also need to attract talent and leadership who are passionate about your mission. Almost everyone on our team has a personal connection to CMT, and as I have recruited new staff over the past five years I have looked for that same level of commitment and dedication in candidates. I can say this is the most dedicated group of people I have ever worked with over the years. Our board of directors provides incredible leadership, raising more than 25 percent of our annual fundraising revenues and engaging in strategic business discussions that drive our mission. I have worked closely with the board chair to recruit new members to our board that will have a high impact on our mission and fundraising efforts.

You need to be good at connecting with your community and telling your story. I have worked with our team to build a robust marketing and communications plan to share the impact our organization is making with the community. I have found this has been critical to engage community members so that they feel a part of the organization and have a sense of ownership in the mission.

You also need to be very efficient with your resources. Donors expect it, and they should. I have worked closely with our board and team to develop excellence in our operational efficiencies. More than 90 cents of every dollar we raise at the CMTA goes directly to support our mission and we are spending more of every dollar on CMT research than any other organization. This is one of the key reasons we were awarded a 4 STAR rating by Charity Navigator and a Perfect 100 score!

You need to be nimble and to innovate. The CMTA was able to pivot quickly in 2020 during the pandemic because we are an agile organization that can respond quickly to new developments. We also were able to roll out new programs to reach community members thanks to the creativity and innovation within our team.

How has the pandemic changed your definition of success?

The pandemic hasn’t changed our definition of success; however, it has provided more opportunities to connect with members of our community online and virtually, something people are much more accustomed to now.

How do you get inspired after an inevitable setback?

I have a wall of CMT community member photos in my office. The wall of photos reminds me every day why we are striving so hard to develop treatments and a cure for CMT.

We are very blessed that very prominent leaders read this column. Is there a person in the world who you would like to talk to, to share the idea behind your non-profit? He, she, or they might just see this, especially if we tag them. 🙂

Patrick Lencioni, a leadership and teamwork author, is someone who has inspired my leadership style. Please tag him!

You’re doing important work. How can our readers follow your progress online?

You can connect with the CMTA via our website at www.cmtausa.org!

Thank you for a meaningful conversation. We wish you continued success with your mission.

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Food Is Medicine And What We Eat Is Important

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Your mental state is a critical component of your physical health. And when you’re under a lot of stress, you might not be eating the healthy food that provides nutrients for fighting anxiety and depression. So when we examine what we’ve been eating, most of us discover that the decisions we’ve been making in the name of simplicity, convenience, or saving time have been damaging to our total health – body, mind, and spirit.

A person’s diet is a direct reflection of their health. When a person does not eat the right foods, their body breaks down. This can lead to an overall decrease in quality of life and many other diseases linked to improper nutrition. In North America, our current diet mainly consists of an excess of grain, sugar, fried and fatty foods. As a result, disorders including hypertension, diabetes, obesity, Alzheimer’s, and certain malignancies are becoming increasingly widespread.

The science of food has always been discussed; however, with recent technological innovations in food processing and agriculture, people have enjoyed more convenient foods that are less expensive than ever before. Unfortunately, with every convenience comes a trade-off. Smart foods are often packed with sugar, salt, and calories, leading to poor health in some individuals. 

To understand what a person is putting into their body, it’s essential to realize that the small molecules in food are responsible for allowing our bodies to function. These small molecules are called nutrients, including vitamins, minerals, phytochemicals, and enzymes. A nutrient is not a value unless absorbed by the body through a specific pathway. For example, if you absorb calcium without vitamin D, your body will not use that calcium. 

Eating a balanced diet keeps you healthy, but it helps reduce your stress. For example, eat foods rich in vitamins, minerals, and antioxidants because they help augment your immune response and prevent toxins from damaging your cells. Vitamins A, C, and E serve as antioxidants that fight off free radicals in the body. Free radicals are toxic products of metabolism that cause damage to your cells. Experts claim that they are responsible for the aging process. Good sources of these vitamins are deeply-colored vegetables- green leafy, yellow, and orange vegetables, such as squash, broccoli, kale, spinach, and carrots.

Iron is one of the most abundant minerals in the body, and it mainly functions to deliver oxygen to your cells. Hence, an iron deficiency, medically termed Iron-deficiency anemia, is associated with weakness, easy fatigability, and pale skin. Tea, coffee, red wine, grapes, and berries are rich in antioxidants that function the same as your vitamins A, C, and E. 
You need a diet that’s healthy and balanced – and one that can fit comfortably into your busy lifestyle.

Here are some of the recommended dietary guidelines.

Eat a diet high in fresh vegetables, vitamins, and minerals. 

Exercise every other day to release endorphins, feel good, get the blood flowing, and reduce stress levels. 

Eat salt only when you need it, but not too much as your body does not need it. Many people with anxiety are hypothyroid or have low magnesium. When your body needs more sodium, it can indicate that you are not producing enough cortisol or are dehydrated. If you experience chronic anxiety, I recommend working with a physician to run tests on cortisol levels and then take salt supplements as needed. Use spices like turmeric, ginger, curry, and aromatic herbs like parsley, rosemary, sage, and basil.
Eat low-fat meals because they will cause a minor spike in blood sugar levels: think lean meats, eggs, vegetables, and nuts; avoid dairy if it makes you feel anxious. 

Drink lots of water — keep hydrated all day — ideally at least half a gallon if possible — your brain needs water to function optimally! 

Avoid foods that you know will make you feel bad, such as dairy, even with low-fat content. You can cut out dairy and not worry about it! 

Avoid sugar, caffeine, processed foods, alcohol, and any other substance that makes you feel bad or increases anxiety levels. Also, avoid coffee — drinking more than one cup a day can cause anxiety in some people. Coffee is also dehydrating and inhibits the absorption of minerals from food/water/supplements — try caffeinated water as a substitute for coffee if you like the caffeine kick. 

Find a natural health professional that you can talk to or work with to quickly get the results you want. 

Healthy foods and nutrition can help you stay fit, but they can also assist you in treating disease. When you nurture your body physically with these nutrient-dense foods, your mental capacities improve, as does your spiritual welfare. Moreover, because your spiritual health is at its best, it will radiate to the exterior world, causing others to notice you’re happier and more relaxed, and your stress levels have decreased dramatically.

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The Points of Light Civic Circle Offers Real Ways You Can Change the World 

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Sixty-six percent of Americans don’t believe they can make a big impact in the world. 

That figure is according to Points of Light’s research on civic engagement. But what if I told you there are actually many ways to drive change? 

Today’s political climate can feel divided or even stagnant, but the truth is, you really can make things better, starting with your own community, one act of kindness at a time. And those aren’t just words. I’m here to share real, practical ways for you to make a difference. 

The Points of Light Civic Circle helps people connect to opportunities and understand that doing good comes in many forms. It is a framework that represents your power to lead, lend support and take action for causes you care about and live your best civic life. 

The Civic Circle provides actionable examples of all the ways you can change your community to reflect the world you want to see around you. In fact, you’re probably doing some of these things already. Are you helping a neighbor by picking up groceries or chaperoning on your child’s class field trip? You’re volunteering. Did you vote in the last election or help others get to the polls so they could vote? Those acts of civic duty illustrate the “vote” element. When you buy a product, do you choose to support companies that reflect your values or advance a social cause? That’s called “purchase power.” There are nine elements of the Civic Circle, and countless ways to bring each one to life. 

This blog is the first in a five-part series that will help you find real and manageable ways to activate the Civic Circle through apps, documentaries, podcasts and books. 

We also offer other resources to help you connect with all the ways you can become empowered to be the change you want to see in the world. Check out our videos that provide an in-depth look at each element of the Civic Circle. And don’t miss Civic Life Today, our digital magazine series. Each issue takes a deep dive and provides materials, ideas and inspiration so that you can become civically engaged.  Get started today, and launch your own civic engagement journey with these tools. 

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Are you an Amateur or a Pro? 30 Differences to Help You Decide…

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My client, Sebastian, thinks he’s behind on “life”.

He thinks he missed the memo the rest of us received on how to live a happy life.

I know better.

Sebastian hasn’t fallen behind and there is no such memo.

We’re all just trying to figure it out.

Unless we’re not. And there are a lot of people who simply are not trying to figure it out.

My friend and Professional Coach, Elaine Taylor-Klaus, calls them Status quo-ers — as opposed to Growers.

Anyone who makes a serious commitment to working with a Professional Coach is by definition a “Grower” and Sebastian is no exception.

Growers want to know, feel and live more. They push every boundary and sometimes fall off cliffs. They say “yes” to way too many things and often feel overwhelmed and over committed. They have a congenital distaste of the status quo and will sabotage any situation if it feels like “settling” to them. They’re insatiable and often don’t know what exactly will assuage their hunger.

Growers often appear to the world as troubled, frustrated and critical.

Inside they feel unfulfilled and misunderstood.

The truth is that they can’t help but be driven by Oscar Wilde’s belief that,

“To live is the rarest thing in the world. Most people just exist.”

Growers will break every piece in the china shop when they find themselves just existing and not living as they see fit. And they suffer for it.

That is… until they turn pro and transform their life!

Steven Pressfield famously states in his book, Turning Pro

“Becoming a pro, in the end, is nothing grander than growing up.”

Sebastian thinks he’s falling behind because he’s still living life as an amateur at 34.

To put the above into context, I didn’t turn pro till well into my 40’s!

Best move I ever made! 

So what’s the difference between living life as an amateur vs. a pro?

Although there is no one size fits all manifesto on “how to turn pro”, here are thirty distinctions I’ve learned which apply to ANY Grower who is truly committed to living a life of purpose, fulfillment and ease.

  1. Amateurs look for hacks and shortcuts — Pros do the work.
  2. Amateurs speed up — Pros slow down.
  3. Amateurs are busy — Pros are focused.
  4. Amateurs sell first — Pros serve first.
  5. Amateurs think it’s about them — Pros know it’s never personal.
  6. Amateurs think life is short — Pros know life is actually really freakin’ long.
  7. Amateurs are reactive — Pros are responsive.
  8. Amateurs live with constant misunderstandings — Pros take the time to get clear.
  9. Amateurs don’t know what success looks like (to them) — Pros  know their definition of success and aren’t afraid to change it.
  10. Amateurs don’t know their core life values — Pros do.
  11. Amateurs want to feel happy — Pros want to feel alive!
  12. Amateurs play to “not lose” — Pros play to win.
  13. Amateurs are harsh — Pros are fierce.
  14. Amateurs secretly enjoy being in the “Victim Mindset” — Pros are a “Hell No” to that!
  15. Amateurs wonder what people say about them when they leave the room — Pros know.
  16. Amateurs have false and limiting beliefs around money — Pros don’t.
  17. Amateurs are constantly searching for life balance — Pros are living an integrated life.
  18. Amateurs think everything matters — Pros know what few things actually do matter (for them).
  19. Amateurs set boundaries defensively — Pros simply honor their “operating system”.
  20. Amateurs think help is a four letter word — Pros actively seek opportunities to help and be helped.
  21. Amateurs don’t have a relationship with their “Future Self” — Pros are best friends with their “Future Self”.
  22. Amateurs confuse knowing with doing — Pros receive knowledge and apply it (EVERY moment of EVERY day).
  23. Amateurs love information — Pros love insights.
  24. Amateurs have intentions — Pros have commitments.
  25. Amateurs have expectations — Pros have agreements.
  26. Amateurs compare — Pros create.
  27. Amateurs live from probability — Pros live from possibility.
  28. Amateurs are focused only on the “Goal Line” — Pros are focused on both the “Goal Line” and the “Soul Line”.
  29. Amateurs set goals with contingencies — Pros know contingencies are just excuses and NOW is the time!
  30. Amateurs create from the past — Pros create from the future.

Now that you are aware of the 30 differences between an amateur and a pro, where do you see yourself?

And I’d love to know why. Get in touch with your answer.

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