Never let anyone tell you that you can’t do something. I have received more rejection emails than I can count. I have been told “no” in so many different ways for experiences and jobs that I wanted so badly. However, I took those rejections as redirection and never stopped pursuing my goals.
As part of my series about young people who are making an important social impact”, I had the pleasure of interviewing Mackenzie Anderson.
Mackenzie Anderson has passionately served as an ALS advocate ever since her mom was diagnosed in August 2014 — the same month as the ALS Ice Bucket Challenge. Serving as a child caregiver for almost two years before her mom’s passing, Mackenzie took action through fundraising and advocacy work. To date, she has raised over 91,000 dollars for several influential ALS non-profits and has spoken about her caregiving experience internationally — from Reykjavík, Iceland to Orlando, Florida.
Mackenzie now serves as the youngest member of the Board of Directors for Hope Loves Company, a non-profit committed to serving children and young adults who had or have a loved one with ALS. Some of her most recent honors include being selected as a Forbes Under 30 Scholar and attending Harvard Business School’s pre-MBA program.
Thank you so much for doing this with us! Before we dig in, our readers would like to get to know you a bit. Can you tell us a bit how you grew up?
I grew up in the suburbs of Foxboro, MA — home of the New England Patriots — with a small, immediate family of just my mom, my dad, and my brother. My parents had the most loving marriage and were married for over 25 years. Growing up, my mom was the most selfless woman I knew. To give you a better idea of who she was, you only need to know a couple things. Firstly, she worked as a Special Education Assistant at our local elementary school. And secondly, every Christmas, she baked around the clock just to make our neighbors and friends smile during the holidays. So, growing up, I felt extremely lucky and loved. Life was good — up until when it wasn’t. In August 2014, after months of hand weakness and arm twitches, my mom was diagnosed at only 50 years old with a fatal neurodegenerative disease, Amyotrophic Lateral Sclerosis — more commonly known as ALS. Given only three to five years to live, my seemingly normal teenage life was flipped upside down. Almost overnight, I became a child caregiver to my dying mother.
You are currently leading an organization that aims to make a social impact. Can you tell us a bit about what you and your organization are trying to change in our world today?
I joined forces with Hope Loves Company (HLC), a non-profit dedicated to helping children and young adults who had or have a loved one with ALS, at the beginning of my caregiving journey. Currently, of 30,000 Americans diagnosed with ALS each year, it is estimated that 85% of them have a child or grandchild. Many of these children become child caregivers as a result of their loved one’s diagnosis, and in turn, struggle with depression, anxiety, feelings of loneliness, and isolation.
Our mission is to provide educational and emotional support to children and young adults affected by ALS. Related to this, our long-term goal is to make sure that there is one of our grief camps — better known as Camp HLC — within 5 hours of every child that needs it. In addition to Camp HLC, we also provide “Hugs of Hope” care packages, Family Fun Days, an HLC Kids Count ALS Conference, a Young Ambassador program, the Susan B. Anderson Scholarship (in memory of my mom), group shares and healing circles, virtual programming, classroom seminars and assemblies, and children’s books and educational materials.
Can you tell us the backstory about what inspired you to originally feel passionate about this cause?
When my mom was diagnosed with ALS, I found that there was an immense lack of resources for child caregivers. One day, in desperation, I searched online for something — anything — that could help me to feel less alone. On page 3 of my search, I found Hope Loves Company. This organization, founded by a small, yet incredibly mighty, woman named Jodi O’Donnell-Ames, changed my life. For the first time, I met other people affected by ALS. For the first time, I met other child caregivers. For the first time, I felt like I wasn’t alone. This is the incredible impact that Hope Loves Company has had on me and thousands of other children affected by ALS throughout the world. To give back to the organization that gave me so much, I fundraised and advocated on its behalf across the world. Once I graduated college, I took a chance and applied to join their Board of Directors, in which I now serve as their youngest member.
Many of us have ideas, dreams, and passions, but never manifest it. They don’t get up and just do it. But you did. Was there an “Aha Moment” that made you decide that you were actually going to step up and do it? What was that final trigger?
Simply put, I was raised by my parents to never give up. When I saw my mom dying before my eyes, it broke my heart into a million pieces. She was the most giving and loving woman I have ever met. Yet, she was facing a terminal illness. It would have been easy for me to feel broken — and I did. But, what I didn’t feel was lost; I now had a purpose greater than any that I had ever had before, which was to make meaning of my mom’s battle and eventual death. I clearly remember one day that I was lying in bed crying, but thought to myself, “No, I’m not a scientist and cannot come up with a cure for this horrible disease. However, what I can do is take action and make a difference in the lives of others impacted by ALS”. I wasn’t going to give up; My mom didn’t raise me that way.
Many young people don’t know the steps to take to start a new organization. But you did. What are some of the things or steps you took to get your project started?
Although I didn’t start Hope Loves Company, I have done all that I could to support it from the moment that I knew it existed. About a month after my mom’s diagnosis, I began fundraising for a local ALS walk in Boston. With a small goal to raise only 1,000 dollars, I didn’t know at the time if I could do it, but I knew that I could take action daily to move even a little closer to my goal. Some days, all I did was post on Facebook to remind our friends and family about my efforts. Other days, I hosted a t-shirt fundraiser and drove for hours around MA to personally drop off the shirts with sincere gratitude. To my surprise, we greatly exceeded the goal and raised over 30,000 dollars for the walk. This unexpected success lit a fire within me to push myself to do all that I could to raise funds and awareness for ALS. Suddenly, failure wasn’t an option for me.
Can you share the most interesting story that happened to you since you began leading your company or organization?
When I joined the Board of Directors for HLC, it was the beginning of the pandemic. Our organization’s expectations, like almost all companies at the time, shifted to mere survival. However, as all of our lives halted, ALS never did. In fact, patients became even more vulnerable due to COVID-19, which left their families and children even more isolated than before. During the summer, after having to pull the plug on several of our top fundraiser events, we were trying to come up with ways to engage our supporters and families. Then, the idea hit us to host our first ever “Virtual 5K: Walk, Run, and Roll”! Again, we set our expectations low at a 5,000 dollars goal, thinking that since most people struggled financially this year, that fundraising would be lower than usual. Additionally, I set a personal goal to run my first ever 5K. Although nervous, I was determined to do so in memory of my mom’s 1.5-year battle with ALS. I began training by going on 1-mile runs three times a week. And when event day came, I was overcome with nerves and questions: How slow am I going to be, will I embarrass myself, will I even finish? Keeping my mom’s difficult battle in mind during the entire run, I felt a strength within me like never before. Not only was I able to finish, but I was the 2nd top female athlete, and our team, Susan’s Striders, was the top fundraiser with over 5,000 dollars raised. Even more exciting, overall, the hope and passion of our families and supporters helped us raise almost 25,000 dollars. These funds enabled us to shift all of our programming virtually and host our first-ever Virtual Camp HLC.
Can you share a story about the funniest mistake you made when you were first starting? Can you tell us what lesson or take away you learned from that?
The funniest (and most embarrassing) mistake that I made when I first started fundraising for Hope Loves Company was when I was sending thank you emails to donors. When writing, I would paste my sincere (yet generalized) thank you message and then change the name of the recipient to match who I was sending the message to. However, in my copy/paste haste, I addressed several people by the wrong name. Although many responded with a laugh and with forgiveness, this taught me that taking the time to thank donors (and any supporter in your life — financially or not) properly is probably the single most important thing you can do. It not only leads to a higher chance for future donations, but it builds your relationship with the donor through showcasing your authenticity and gratefulness. So, before sending that email, remember to proof-read it.
None of us can be successful without some help along the way. Did you have mentors or cheerleaders who helped you to succeed? Can you tell us a story about their influence?
Hope Loves Company’s founder, Jodi, has been my mentor and friend since we first met in 2014. I consider myself so lucky to know her. Her passion for helping those affected by ALS inspired me to begin my advocacy efforts and Jodi has invited me to speak at several conferences with her over the years. However, one memory truly stands out from the rest and it was my first time speaking on a public platform about my caregiving experience. One of the most impactful conferences for those in the ALS community is the International ALS Alliance Meeting. During this conference, all of the ALS organizations around the world come together to share their progress towards a cure and share their programs to help those affected by ALS. Jodi, knowing my passion as a young caregiver at the time, selflessly asked me to join her for her first talk about HLC on their stage. Calming my nerves, she told me to simply speak from the heart and share my story. Once we finished, we were overwhelmed by representatives from international organizations praising our efforts and asking how to bring Camp HLC to their state or country. This transformative experience gave me the confidence I needed to share my story on a larger platform and ultimately helped me to become the strong, independent young woman I am today.
Can you tell us a story about a particular individual who was impacted or helped by your cause?
In 2015, I attended Camp HLC in New Jersey and was still a caregiver for my mom back at home. The experience had been weighing on my heart heavier than usual. I had endless days of wondering: How did this happen, why now, why my mother, why me? Deep in thought, a little 8-year-old girl walked up to me and sat down. She was quiet for a few moments and then blurted out rather suddenly, “My mom has ALS”. Caught off guard, I remember simply responding, “Me too”. We sat there for another few moments in comforting silence until she said, “This is the first weekend that I have met someone like me”. As those words settled in, it hit me the enormous impact and responsibility that HLC holds in so many children’s and young adults’ lives. Without this incredible organization, that little girl would have thought that she was alone, and I would have continued to wallow in self-pity. However, the incredible part about HLC is that it provides the chance for kids to just be a kid again — not a caregiver. There is this unspoken bond between attendees that you are surrounded by people who understand you. And for many, those invaluable connections are life-changing.
Are there three things the community/society/politicians can do to help you address the root of the problem you are trying to solve?
Specifically, to help student caregivers, I believe that:
- We can start support groups for student caregivers at high schools and universities within our communities so that student caregivers can speak with others going through similar situations.
- Teachers and professors must support these students with academic flexibility. A 2006 study conducted for the Bill & Melinda Gates Foundation found that 22% of high school dropouts leave school to care for a family member.
- As community members, we can support child caregivers by being willing to help in any way they need. Recognizing that hands-on support is likely to be a caregivers’ greatest need, you should allow them to define what assistance would be most useful to them.
What are your “5 things I wish someone told me when I first started” and why. Please share a story or example for each.
- You don’t need to know everything. No one does. And if they think they do, they’re lying.
- Do the best you can, when you can. Some days, you can only give so much. Remember to keep your tank full before emptying it for others. I struggled with this for years, and still do, but it is the most important thing to remember that you can only do so much in a given day.
- “Shoot for the moon. Even if you miss, you’ll land among the stars.” If I had not set incredibly high fundraising goals for myself, then I wouldn’t have put in the work every day to secure at least 5 dollars more than I had raised the day before.
- Prioritize your health. When you are busy with school, work, what have you, it is easy to put moving your body every day on the back burner. But, personally, I have found that starting my day with a 6am workout (not for everyone — I know), energizes me for the day, makes me feel accomplished, and positively affects my mental health.
- Never let anyone tell you that you can’t do something. I have received more rejection emails than I can count. I have been told “no” in so many different ways for experiences and jobs that I wanted so badly. However, I took those rejections as redirection and never stopped pursuing my goals.
If you could tell other young people one thing about why they should consider making a positive impact on our environment or society, like you, what would you tell them?
To those who have experienced a form of trauma in their lives, giving back to a cause that you are passionate about, or helped you through a hard time, is the most healing experience that you could ever have. It truly is a journey that is pushing me toward self-actualization and has transformed me into the best version of myself. If you’re considering making a positive impact on our society, in any way, shape, or form, do it.
Is there a person in the world, or in the US with whom you would like to have a private breakfast or lunch with, and why? He or she might just see this, especially if we tag them. 🙂
As a fan since I was 11 years old, I would totally fangirl if I ever met Taylor Swift. Additionally, on a more serious note, she is currently helping her own mom as she battles cancer and a brain tumor. I think that speaking about our shared caregiving experiences would be incredibly healing for us both. My mom and I used to attend her concerts together every year at Gillette Stadium, and I still consider those to be some of our most special memories together. Taylor’s music brought me so much comfort during extremely tough times and I would love nothing more than to thank her over lunch one day — although, I think we are both more ~brunch~ people.
How can our readers follow you online?
To help change the lives of children affected by ALS, you can follow Hope Loves Company on Instagram and Facebook @HopeLovesCompany and on Twitter @HopeLovesCo.
This was very meaningful, thank you so much. We wish you only continued success on your great work!