RARE Daily

Rare Leader: Cody Stevens, President and CEO, The PMG Awareness Organization

September 17, 2020

The Basics
Name: Cody Stevens

Title: President and chief executive officer

Organization: The PMG Awareness Organization

Social Media Links:

Disease focus
: Polymicrogyria (PMG) is a condition characterized by abnormal development of the brain before birth. While a baby is still in the womb, neurons are migrating to where they are supposed to go. For some reason, the neurons become disorganized and land in the wrong places. The surface of the brain normally has many ridges or folds, called gyri. In children born with polymicrogyria, the brain develops too many folds, and the folds are unusually small. The name of this condition literally means too many (poly-) small (micro-) folds (gyria) in the surface of the brain. These small folds do not process the information they receive like a normally formed brain. This causes problems with functioning in the body much like how the effects of a stroke can affect the brain. The impairments that are seen as a result of PMG depend on what part of the brain is involved and how severe the deformity is.

There are several different forms of PMG. Even though multiple children may be diagnosed with the same form, PMG affects every single child differently. Common problems associated with PMG in general are: swallowing and speech difficulties, reflux, seizures of varying degrees (about 90 percent suffer seizures at some point in their lives), development delays, lack of muscle coordination, impaired cognition of varying degrees and cerebral palsy, but there can be many others.

Headquarters: Newport Beach, California

How did you become involved in rare disease: My son was diagnosed with polymicrogyria at 18 months with an EEG after seizures. There was little to no information about the disorder, other than basic facts of what it is. There was no information regarding causes, future battles, or lifespan expectations. We had never heard of this disorder, let alone know anyone else who had ever been in our shoes. As a concerned and frustrated father, I decided to reach out to The PMG Awareness Organization for more answers. There, I was greeted by a welcome board of directors, supportive families in similar situations, and a wealth of knowledge from those who have experienced what I was experiencing firsthand. Little did I know at the time, that the very same organization I went to for answers, I would someday have the amazing opportunity to lead as the president and CEO.

Previous career: Child care coordinator for the Board of Child Care, correctional officer and trainer.

Education: Associate degree in applied sciences from Chesapeake College.

The Organization
Organization’s mandate
: Our mission is to build a community of support to enhance the lives of those affected by polymicrogyria through education, advocacy and promoting awareness.

Organization’s strategy: The PMG Awareness Organization is a 501(c)3 nonprofit organization of families, caregivers, and medical professionals who care about those with Polymicrogyria. We offer support to all individuals and families who are affected by polymicrogyria by:     

  • Educating families who are newly diagnosed as well as continuing to educate those already diagnosed by keeping them abreast of the latest medical information, treatments, therapies, medications, potential procedures, financial resources, and research available.
  • Maintaining a current and up-to-date list of available resources and links to pertinent information having to do with polymicrogyria.

  • Advocating to raise awareness and increase the public’s knowledge of polymicrogyria, to create change by encouraging people speak up about polymicrogyria and lead our families as well as the public to improvements in policies, legislation, and service development.

  • Offer support and encouragement to families and individuals affected by polymicrogyria through different organizational programs such as Contact A Family, Birthday Program, Traveling Awareness Bears, Support Groups, Meet-Ups, and Conferences.

  • We intend to continue creating more options for advocacy, awareness, resources, and research to benefit the families we represent.

Funding strategy: We raise money utilizing several different strategies. To date, public events and fundraising has been the largest source of funding. We have our PMG Awareness Virtual 5K Run/Race in October. We also have merchandise available for purchase, and retail partners who donate percentages of sales to our organization. We have considered utilizing a second large fundraising opportunity. We also encourage sponsorship from like-minded or connected organizations, vendors, and partners for events, both virtual and live. We have also recently hired a grant writer to assist in grant applications for upcoming outreach, educational, and awareness programs.

What’s changing at your organization in the next year: Our organization is growing rapidly. I am part of the transition regarding the restructuring of the executive board. We also intend to grow our board from three members to five in the coming year. We are also restructuring our Scientific and Advisory board, which consists of professionals nationwide who have focused on studying polymicrogyria and intend on continuing their research. There are plans to create an advocacy team and regional ambassadorship program, headed up by a PMG mom and a doctor in nursing administration. The goal of this team and program is to not only assist our families in across the country, but also to reach the medical field, media, and general public for the sake of awareness. Our organization is also beginning to expand its reach in the areas of partnership/sponsorship with like-minded and/or connected organizations. Our grant writer has recently focused on acquiring funds to enhance our Advocacy Team, research funding, and current program expansions, including public events and conventions for our PMG families.

Management Style
Management philosophy
: My management style is to create a positive work environment that utilizes my team’s strengths to ensure we perform as a cohesive unit. This will help each member thrive and not become overtaxed with responsibilities. Instead, we share in the workload to safeguard longevity.

Guiding principles for running an effective organization: We have a six-point value system as an organization that we follow for the sake of our supporters: compassion, respect, integrity, excellence, community benefit, and good stewardship. These are things we want our supporters to know they can expect from our leadership. Internally, transparency and honesty are major principles that we stand by as well. Ethics, understanding, and organized leadership are also very vital to our organization and our mission. With all members inside and outside of our organization being, in some way, connected to polymicrogyria, we do our best to uphold the lead-by-example approach, knowing that our family members are the biggest advocates for those diagnosed.  We can only hope that the strong advocacy of our organization, and its supporters, continues to be contagious within our medical professionals, researchers, partners, and the general public.

Best way to keep your organization relevant: We continue to strive for new information, new connections, partnerships, event opportunities, and research. Our organization focuses on its direct connection through our social media outlets, our website, newsletters, fundraisers, and conventions. These outlets give us the best opportunity to keep anyone who is connected to us or following our progress up to date on the latest, most current information and actions our organization can provide.

Why people like working with you: This is not, and has never been about one person, or even our group of volunteers. Anyone who connects with The PMG Awareness Organization is brought in like family. The understanding and support from a parent, family member, or friend in a similar situation is unlike any other support you can find. Our ambition, our drive, and our unending dedication to our supporters is what makes the dynamic of our organization so special. As parents of those diagnosed, we know that there is no choice in fighting for what’s best for them. That same drive gets revitalized every time we see a new family or hear a new story. With that said, this organization takes our job very seriously, as if each diagnosis affects us personally; because it does.

Mentor: When it comes to my current position and training, I have to give kudos to Robin Hudson. She was the president and CEO until I recently stepped in. Besides the technical needs and expectations of the position, she truly drove home the importance of the family and supportive atmosphere that was created with her board. Before coming on board, I personally learned from direct experience with nonprofit organizations, and previous jobs regarding leadership and direction. Our current board is constantly learning from each other and adapting to each other’s strengths. And as a board, we continue to learn from our diagnosed families and supporters regarding their needs. In the end, the initial role tasks and expectations were taught by those who preceded us. Today, we are ever-learning from each other.

On the Job
What inspires you
: Those we support that have been diagnosed with polymicrogyria are my truest inspiration. I’ve made it no secret that my four-year-old son is my hero. After his diagnosis, he began extensive treatment, therapy, testing, and appointments. Though some of this has slowed, it is still a constant way of life for him. He knows at each doctor’s appointment what is expected of him. Physical therapy, occupational therapy and, speech therapy is part of his routine. EEG’s and MRI’s are just another adventure to him. He truly inspires me daily. Little did I know in the beginning, that he is one of thousands of PMG diagnosed friends located all over the globe that have the same exact mentality. In this position, I live a very inspired life.

What makes you hopeful: The dedication to our mission that I see consistently from our board, our families, and our supporters. A lot has happened within our organization in a little time. The majority of that is because we have the supporting cast that makes it all possible. When I see the drive and motivation that I see from those who truly support what we are doing, there is no doubt that these recent moves have been because of the dedication of those around us. I can’t wait to see what happens as we continue to grow together.

Best organization decision: Our best decision was to expand and bring on additional support team members. As we grow, there is much more work to be done. We have been able to bring on new volunteers with great experience and talents to assist with the extra tasks, all of whom are parents of PMG diagnosed children with a drive for this organization to succeed.

Hardest lesson learned: As an organization, there will be people looking at you, giving you their opinion, and/or criticizing your approach from every angle. All of us would love to be able to please anyone and everyone that we connect with directly in this organization. Regardless of your standpoint, whether it’s business, partnership, direct, or indirect; there will always be opposition or opinions that disagree with an action or direction. Just like in everyday life, there is no way to please everyone by your actions. But as an organization, we have to make sure that we stay focused on what is best for the organization, its purpose, and those we support.

Toughest organization decision: Transition of leadership within our board, and the process of restructuring and reevaluating the board and volunteers.

Biggest missed opportunity: It was no fault of our own, but we had to miss out on this year’s PMGA United Convention in Costa Mesa, California. At the convention, we were scheduled to have a great lineup of speakers, professionals, and entertainment for our families to enjoy, as well as making our transition of the board live at the convention. This convention has been rescheduled to July 2021 at the same location.

Like best about the job: The opportunity to make such an impact on such a large scale for such a deserving population. As a PMG dad, my job has always been to take care of my son to the best of my ability, by whatever means I can. The opportunity to do such a thing doesn’t get much larger than this. But even saying that, what I have stepped into is much larger than just one family. As an organization, we have the opportunity to make major changes for very deserving people across the globe.

Like least about the job: People using our likeness for personal profit. We consistently battle with copyright infringement, brand issues and more. Fairly often, third party websites and organizations will change our logo and brand just enough to where it can be used for personal gain. The need to consistently have to protect our organization from these things can be tiring and frustrating.

Pet peeve: Repetitive tardiness. Obviously sometimes things can happen that are out of our control and sometimes things are just bound to happen. But there is certainly a difference between life events and repetitive tardiness.

First choice for a new career: If I were to be capable of doing this job full time, and still be able to provide for my family, I am not sure I could find a better, more rewarding position, then the one I am currently sitting in.

Personal Taste
Most influential book: The Bible

Favorite movie: The Rocky Series

Favorite music
: Not sure I have one.

Favorite food: Chicken wings—I love trying new flavors.

Guilty pleasure: Motivational sports movies with snacks, sitting in my favorite chair.

Favorite way to spend free time: Cooking new recipes with my wife and son. We also love to travel.

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