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Jodi O’Donnell-Ames: “Do what you can, with what you have, where you are”

Children are our greatest resource yet, have you ever seen a commercial about supporting a child caregiver? Have you seen many commercials about mentoring a child? Now more than ever, with a multitude of crisis, children are in caregiving roles. We have so many children in our country who are facing enormous challenges and who […]

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Children are our greatest resource yet, have you ever seen a commercial about supporting a child caregiver? Have you seen many commercials about mentoring a child? Now more than ever, with a multitude of crisis, children are in caregiving roles. We have so many children in our country who are facing enormous challenges and who need resources and mentors. Show them that you care. Be a mentor. If you see a child struggling, don’t hope that someone else will step in to make a positive impact. Be that someone.


As part of my series about “individuals and organizations making an important social impact”, I had the pleasure of interviewing Jodi O’Donnell-Ames a certified teacher, writer, massage therapist, member of Union Fire Co. and Rescue Squad and tireless advocate for Lou Gehrig’s disease, or ALS (Amyotrophic Lateral Sclerosis).

She is also the founder of Hope Loves Company, a non-profit organization committed to providing educational and emotional support to children and young adults who had or have loved ones battling ALS. She lives with her husband Warren in Titusville, NJ. Their children, all young adults, have lost a parent to ALS before the age of 11. Jodi is the author of two books, The Stars that Shine and Someone I Love has ALS. She was chosen as People magazine’s, “Hero Among US” in 2015. She has appeared on the Today Show, Jersey Matters, Fox News and more. She has also given a Tedx about her life with purpose.

Thank you so much for doing this with us! Can you tell us a story about what brought you to this specific career path?

In 1995 my husband Kevin O’Donnell started to feel weak and he began falling. When he could not open a sugar packet, he knew something was seriously wrong. Kevin was diagnosed with ALS (Amyotrophic Lateral Sclerosis) or Lou Gehrig’s disease at the age of 30. We were devastated and everything we had planned for our future was suddenly shattered. When Kevin passed away at 36 years old, he was paralyzed, speechless and ventilated. He also had a feeding tube because he could no longer eat. This enormous loss for both me and our daughter Alina (who was 8 years old) changed my approach to life. I no longer took anything for granted. My husband Kevin taught me so much about life, resilience, humility, and gratitude.

A few years later, I married Warren Benton Ames who also lost his wife to ALS. His children Nora and Adam became my children as well. There were no resources in place for my three children who felt alone in their ALS experience. I soon recognized that this was an unmet need and that I would be the change that I wanted to see in the world. I would create a nonprofit and make sure that it was successful.

Can you share the most interesting story that happened to you since you began leading your company or organization?

So many interesting things have happened since our inception in 2012 that it’s difficult to choose just one; however, there is one event that still amazes me to this day. A few years after I founded Hope Loves Company, I was discouraged because I had big dreams for the families we serve but little money to make them happen. A few dear friends of mine decided to have a Thanksgiving dinner at their church. The dinner included all of the thanksgiving favorites and was only 5.00 dollars. I was grateful to gather in Thanksgiving and to share my story of hope with others, but didn’t think much money would be raised. When I finished addressing the 40 people in the room, many had questions and comments. One lady in particular pulled me aside and said that she had a dream and she was supposed to contribute to Hope Loves Company. She asked me to meet her at the local library and said that the donation needed to be anonymous. She handed me an envelope and the check was written for TEN THOUSAND DOLLARS! That gesture and generosity was a confirmation that people believe in our mission and in my vision and that with continued hard work, it was going to work.

Can you share a story about the funniest mistake you made when you were first starting? Can you tell us what lesson you learned from that?

I am a trained teacher but I have no training in running a business. When I first started, I emailed general information about Hope Loves Company to everyone in my circle without bcc’ing them. I got a few emails back suggesting that I be more considerate of people’s privacy. I understood and realized how little I knew about running a nonprofit. I went online and ordered a bunch of books and got busy reading.

Can you describe how you or your organization is making a significant social impact?

When my late husband Kevin battled ALS, there were no organizations available with the mission of supporting children affected by the disease. Today, Hope Loves Company is the ONLY nonprofit with its specific mission. Our children either have lost someone to ALS or are currently caring for a loved one with ALS. They may feel alone in their journey. Hope Loves Company’s programs provide them with age appropriate books to better understand ALS. We provide them with Hugs of Hope care packages to remind them that we care and appreciate them. We also invite our families to Camp HLC, a free weekend where everyone understands the ALS journey but gets to have fun and be silly regardless! We are giving a voice to children caregivers and are helping them to feel appreciated, supported and less alone.

Can you tell me a story about a particular individual who was impacted by your cause?

We have run 25 Camp HLCs across the country to hundreds of children but when we first started, I was curious if children and their families would benefit from such an experience. Our very first camp survey answered my question. There was a small family in attendance. Dad had been battling ALS for over a year. Mom was there too and was so sad for both her husband and her child. Their daughter was sweet and quite shy, so she did more observing than participating in the events we planned. I was sure if she wanted to be with us and I wondered if the weekend would make a positive impact on her. I wondered if a camp experience, along with the chance to express her feelings, would help her when she left the campground. For our growth, we have every attendee fill out a camp survey. This young lady’s response was loud and clear to me. Her response was that in over a year, since her father’s diagnosis, she had not met anyone else who understood what she was going through until now. She also said that since that time, it was the first time that she did NOT have to explain ALS to anyone and what a relief it all was. She then stated that she would be attending every camp that we offered, and she did! I knew then and there that we had something not only helpful but necessary! Every Camp HLC produces more of these poignant experiences. Once word of our vision got out, I received a call from another ALS organization leader who told me that I had no choice but to make HLC grow.

Are there three things the community/society/politicians can do help you address the root of the problem you are trying to solve?

There are 30,000 people living with ALS in the U.S. Every 90 minutes someone is diagnosed with ALS. Every 90 minutes someone dies of ALS. We need more awareness and we need more funding to help eradicate this horrible disease. ALS affects people of all ages, all races and ethnicities. ALS does not discriminate. Most people live 2 to five years after diagnosis and they lose their ability to walk, talk, eat, and eventually breathe. We also need more people to care about the thousands of people who live with ALS.

How do you define “Leadership”? Can you explain what you mean or give an example?

Leadership is about encouraging the best in others and helping them to find their passion and purpose. Leadership is not about telling people what to do. It’s about inspiring them to be their best personally and professionally. Our Executive Director, Cara Haggerty, started as an intern at HLC. She grew as a leader because she opened her heart to the cause but she also took the steps to be a leader by taking initiative and putting ideas into action. Being a leader means that you need ideas and a vision. But leadership does not end there. You need to put those ideas into action and that takes work. Lots of work.

What are your “5 things I wish someone told me when I first started” and why. Please share a story or example for each. That running a nonprofit and running a business are more similar than I realized. I learned that putting a realistic budget and realistic goals in place were paramount to our success.

That mentors are imperative for growth. As an independent woman, I typically try to tackle things by myself. However, in my fifties, I learned to ask for help and I learned to seek guidance. I feel much more confident knowing my strengths and seeking help where and when it is needed.

That success happens soon after you want to give up. I remember one late night early on in the journey. I was tired and wanted to go to bed but I had to get ready for an important meeting the next day. Once in bed, I questioned if I could continue the long hours and the stress of creating something new. The next morning, four pages of donations popped up on my screen. A gentleman who was at end stage requested donations be sent to Hope Loves Company. He made a beautiful post on FB about his young children and how we have been there for them. I had a good cry and his post was bittersweet of course, but his words and his actions fueled my determination to help more families.

To be gentle with yourself. I am my worst critic. I have high expectations of myself and never take lunches or breaks. BUT breaks can be very helpful. Sometimes when you take a moment to focus on something else, you return restored. When you are stressed, tired and nothing is going right, take a moment for yourself. The world will still go on!

That dreams begin outside of your comfort zone. Allow yourself to dream and live outside of your comfort zone. Never did I think that I would be on television as much as I have and I imagine myself on the couch and chatting with Ellen DeGeneres one day!

You are a person of enormous influence. If you could inspire a movement that would bring the most amount of good to the most amount of people, what would that be? You never know what your idea can trigger. 🙂

Children are our greatest resource yet, have you ever seen a commercial about supporting a child caregiver? Have you seen many commercials about mentoring a child? Now more than ever, with a multitude of crisis, children are in caregiving roles. We have so many children in our country who are facing enormous challenges and who need resources and mentors. Show them that you care. Be a mentor. If you see a child struggling, don’t hope that someone else will step in to make a positive impact. Be that someone.

Can you please give us your favorite “Life Lesson Quote”? Can you share how that was relevant to you in your life?

Helping someone or creating something useful does not have to be extravagant. I love this quote because it’s a simple reminder that beginning is the first step. If you create something that is needed, it will grow. If you spread love and kindness, you will grow too. “Do what you can, with what you have, where you are.”

Theodore Roosevelt 26TH U.S. PRESIDENT

Is there a person in the world, or in the US whom you would love to have a private breakfast or lunch with, and why? He or she might just see this, especially if we tag them. 🙂

Yes! I would love to have breakfast with Arianna Huffington and Jay Shetty. Arianna’s books- Thrive and The Sleep Revolution have been excellent resources for my personal and professional growth and Jay’s light and energy are infectious. Would love to have tea with them.

How can our readers follow you on social media?

Google my full name, Jodi O’Donnell-Ames and you will find me. You can also find me on Twitter and Facebook. Learn more about Hope Loves Company by visiting our website: www.hopelovescompany.org

This was very meaningful, thank you so much. We wish you only continued success on your great work!

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