Amber Barbach of The Glioblastoma Research Organization: 5 Things You Need To Know To Successfully Lead A Nonprofit Organization
Passion is key — An audience is inspired to support a charity initiative because they believe in the cause. If you don’t have that link, it will be reflected in your work and the content you publish. Start something you’re passionate about. Passion gives you energy and motivation and it’s that powerful desire that will enable you to build upon your vision for the nonprofit.
As part of my series about “individuals and organizations making an important social impact”, I had the pleasure of interviewing Amber Barbach.
Amber Barbach is the founder and director of the Glioblastoma Research Organization, a 501(c)(3) nonprofit organization raising awareness and funds for new global, cutting-edge research to find a cure for glioblastoma, an aggressive and treatment-resistant form of brain cancer. Originally from Miami, Amber has extensive expertise in community development and brand management after nearly a decade of working in branding partnerships and event marketing for global brands such as VanDutch, David Stark, V2 Jets and Ultra Music Festival. She earned a bachelor’s degree in communications and business administration from Florida International University and is currently pursuing a master’s degree in nutrition education from American University.
Thank you so much for doing this with us. Before we begin our readers would like to get to know you a bit more. Can you tell us a bit about your “backstory”?
I’ve always felt a powerful sense of community and while growing up had the desire to give back. After graduating from college in 2017, I had plans to spend time abroad and teach English in Europe. However, little did I know that in less than a year, my life would change forever. In 2018, I lost my father to glioblastoma, a fast-growing and aggressive brain tumor, also referred to as GBM. I decided to redirect my grief and use my knowledge of brand management and experiential marketing, to create an online hub for communication for people impacted by GBM. This was the catalyst for The Glioblastoma Research Organization, which was created to help raise awareness and funds for new, global, cutting-edge research to help find a cure. I was really excited to be able to take my digital skillset and bring it to the nonprofit sector to get younger people more involved in cancer research–since I’m in my 20’s. The organization’s life source is connecting individuals who are in similar situations across the globe, so that they do not have to suffer alone after diagnosis, which was something my family did not have the luxury of when my dad was ill.
Can you tell us the story behind why you decided to start or join your nonprofit?
When my father was diagnosed with glioblastoma on September 17, 2017, my parents decided to keep me in the dark about his illness, knowing I’d immediately return home from my teaching work abroad. After my father’s surgery in January 2018, my mother brought me up to speed and I was on the next flight home. The months that followed were a whirlwind of confusion, with not enough time to process what was happening and just trying to get by. I discovered that I felt alone, with no one to turn to who comprehended the toll this kind of brain cancer puts on relationships and families.
On April 3, 2018, my father passed away. I spent the next few months processing what had occurred in such a short time and felt compelled to create a safe space for others — one that my mom and I were missing during our time as caregivers for my father. The Glioblastoma Research Organization was born from a need to establish a platform for people with brain cancer to talk about their experiences, increase awareness, make connections and raise money to help fund glioblastoma research being conducted by medical professionals at top cancer centers across the globe.
I’m not a medical expert and have never claimed to be one, but from my personal experience and thorough online research, it’s apparent that glioblastoma is one of the most underfunded areas of cancer. How could we hope for a cure if there isn’t enough money being invested in this specific cancer research? That is why I was adamant about creating a platform to help fund glioblastoma research and create a charity that focused on just that. At the time of incorporation, I learned that a handful of other organizations were funding clinical trials, others assisted families in coping with diagnosis, but no one had committed all resources to funding glioblastoma research.
Can you describe how you or your organization aims to make a significant social impact?
The first major social impact the organization has had is its community involvement. The organization has created a worldwide community of over 10,000 individuals who have been affected by glioblastoma in one way or another. Our inbox is filled with stories of individuals who have gained the courage to express what they’re going through and who have encouraged others to share their stories for the sake of raising awareness. Each time a story is shared through the organization’s social media channels, the testimonial is met with love, acceptance and meaningful connections are made. We’re constantly getting submissions from those who have GBM themselves, family members/loved ones of someone fighting and stories about those that have passed away — so we and our community are here to support people at all stages of their cancer journey. When my father was sick, my family didn’t have that kind of support system and so I’m incredibly thankful that the organization has come so far to provide a safe space for others.
Without saying any names, can you share a story about an individual who was helped by your idea so far?
By following the Glioblastoma Research Organization on social media, you can read how thankful our followers are for the online community that we’ve created. I like to believe that our team helps people on a regular basis. We frequently receive messages from our followers and subscribers expressing their gratitude for what we’ve built, how grateful they are that they have a safe place to connect with others and honor their loved ones. I want this organization to continue helping people for years to come.
Are there three things the community/society/politicians can do to help you address the root of the problem you are trying to solve?
The most important thing in this sector is awareness. Most people are unfamiliar with this type of brain cancer and most only learn about it when it affects them personally. My objective is to have glioblastoma receive the same amount of attention that breast cancer does in our society. The more people are aware of how glioblastoma affects communities, the greater the resources for doctors and researchers and the closer we get to a cure.
How do you define “Leadership”? Can you explain what you mean or give an example?
For me, leadership is being a mentor and providing an excellent example for others. I started working young (at 15 to be exact), which has given me the opportunity to have many different jobs and internships over the last 10 years. I’ve had a different type of boss at every experience, all of which taught me significant lessons in leadership and provided me with firsthand experience to curate the leader I wanted to become. It’s incredible how significant the effect of a good leader has to one’s growth and potential, alongside day-to-day happiness in the workplace. I grew, challenged myself and learned the most, and was the happiest when I was in an environment led by someone organized, dedicated, kind and most importantly — human.
I’ve found that positions of “power” tend to remove an aspect of being human and being able to connect with those working for you and with you. The choice was clear, when it was time to start my own company, I’d work to be everything I personally wanted in a leader. I’ve always prided myself in sharing all the knowledge I have with my team, or colleagues, in hopes that they’re learning from me as a mentor and can apply those skills later in life.
Based on your experience, what are the “5 things a person should know before they decide to start a nonprofit”. Please share a story or example for each.
1.Passion is key
An audience is inspired to support a charity initiative because they believe in the cause. If you don’t have that link, it will be reflected in your work and the content you publish. Start something you’re passionate about. Passion gives you energy and motivation and it’s that powerful desire that will enable you to build upon your vision for the nonprofit.
2. Do your due diligence
When establishing a nonprofit organization, research is critical. Invest time learning about trademarks, community partners and the rules in your state. Make sure you have the proper tools for filing your taxes and, most importantly, that you are well-versed in the sector you’re contributing to.
3. Surround yourself with others who are enthusiastic about your cause
Having a group of people as dedicated to your cause as you will make all the difference in your success and day-to-day operations. I started the organization because when my father became ill, I lacked access to these resources. After a major learning curve, I started building a team that could help me continue to better the experience for others who were going through what I did. It wasn’t until then that the nonprofit really took off and flourished.
4. Don’t expect to self-profit
I established the Glioblastoma Research Organization because I wanted to get closer to finding a cure and raise funds for a cancer that is so underfunded. I’m working harder and more efficiently because I have a strong sense of purpose. That is my mentality, so every hour of work is well worth it.
5. You must put in the work
Creating a nonprofit isn’t much different than running a business — it requires a solid strategy, the right people and adequate funding. It’s critical to have realistic expectations about funding and it takes time to build up a source. It’s difficult at first, but highly gratifying.
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 or she might just see this, especially if we tag them. 🙂
I’d love to talk with First Lady, Dr. Jill Biden. Her stepson, Beau Biden, died of glioblastoma in 2015, so she knows firsthand the toll this kind of cancer takes. I’m also encouraged by the initiatives she’s involved in and her leading voice “to end cancer as we know it.”
Can you share your favorite “Life Lesson” Quote? How is that relevant to you in your life?
There is a quote by Roy T. Bennett that states, “Do not fear failure but rather fear not trying.” Since I was a kid, my dad ingrained the concept of persistence in everything I did. I vividly remember when I was 15 years old, we walked by a frozen yogurt store that had a “Now Hiring” sign, but I was too nervous to go in. He said, “watch this,” and he walked right into the store, told them his daughter wanted a job and they told him to have me come in the next morning to meet with the manager. I ended up getting the job but moving forward in life I adapted this “you won’t know unless you try” attitude.
I remember emailing the head of Vogue Magazine’s social media at 18 years old to get a job, and ten emails later I was flying to New York and meeting the staff at the World Trade Center. When it came time to launch the nonprofit, I didn’t “publicly” announce it until nine months after incorporation because I was scared about being so vulnerable in society. Four years later, I couldn’t be prouder at the success it’s generated in terms of community and research funding. Not to say that I haven’t failed — I’ve had many unsuccessful projects, but they’ve all been great learning lessons and growth opportunities. It’s all just another reminder that a fear of failing is just that — a fear.
How can our readers follow you online?
You can learn more about the Glioblastoma Research Organization and its mission by visiting www.gbmresearch.org. We invite you to join our online community on Instagram and Facebook @glioblastomaresearch, on Twitter as @glioblastomaorg and by searching our nonprofit on LinkedIn!
This was very meaningful, thank you so much. We wish you only continued success in your mission.
Amber Barbach of The Glioblastoma Research Organization: 5 Things You Need To Know To Successfully… was originally published in Authority Magazine on Medium, where people are continuing the conversation by highlighting and responding to this story.