“I dream of goals that are so big that smaller thinkers believe I’m being unreasonable”. –Marissa Penrod, mother of son with DMD
I’m often told that I’m stubborn and blinded by emotion. It’s difficult feedback to receive, but Marissa Penrod’s vision of goals is in line with why I live my life the way I do. I truly believe that if your goals and dreams do not scare you, then they are not big enough. When I walked into the Jett Foundation office a week ago and saw Marissa’s words hanging above the Foundation’s namesake, Jett, I couldn’t help but smile. Most people at Next Jump apply to be a part of Code for a Cause (CFAC) because they want to give back to the community or to a cause. Aside from the giving back aspect, CFAC is also an incredible opportunity to work on a soft skill that may not be applicable in one’s regular day to day job. My reasoning was different. I picked a cause and a non-profit I was passionate about and made my goal a reality. As a non-technical person, I worried if passion was enough to make a difference. These projects are typically handled by engineers with minimal roles for non-technical employees. Looking back on the CFAC experience, I believe I was able to make a difference and hopefully opened the door for other non-technical people to participate.
If I polled the general public, my assumption is a majority of people would have no idea what Duchene Muscular Dystrophy (DMD) is, and that’s fair. I wish I were part of that group. I come from a large family and grew up in Vermont. Some of my earliest memories are running through the woods and planning adventures with my cousins when they would come to visit, always noticing my cousin Jim was struggling a little to keep up, but never doing anything about it. I wish I more clearly remember learning about his diagnosis with DMD. What I do remember is his walking braces followed by his wheelchair followed by being unable to leave his bed. He lost a courageous battle at the age of 21. He outlived expectations by 6 years and I truly mean he outlived them - Jim was not one to let DMD win. He loved the Red Sox and the Beatles. He went to his high school graduation and enrolled in courses at a local community college. He lived with a heart full of passion and it was that passion I channeled when applying for CFAC. I knew I could not cure DMD or create a drug to help, heck, I can’t even code. What I could do was bring awareness to a non-profit battling to make a difference and be a part of the process of finding a cure.
CFAC taught me a lot about myself, but even more importantly, it taught me a lot about the amazing people I have the privilege to work with. Between sharing my personal story and the mission of the Jett Foundation, it was easy to help my team of Michael and Bernard understand the important work the Jett Foundation is doing. Michael and Bernard are a part of two totally different teams at Next Jump. Michael works as a developer on our R&I programs and Bernard is a network engineer who’s in charge of making sure our programs are running at full capacity. CFAC was new to all of us but we worked together to find a way to help the Jett team. The Jett Foundation was founded in 2001 by Christine McSherry after her son Jett was diagnosed with DMD. Jett is on the all too familiar course my cousin Jim was on, but this time around, there is hope. There are drugs and clinical trials that are working and Christine will continue to travel and make her case to the FDA, to Parliament, to other DMD foundations, to anyone that can help expedite the approval of this drug that can potentially save Jett’s life.
The Jett foundation, however, is more than just funding research for a cure. They realize there is no support group for the boys and the families that DMD affects. They host camps and events and help families with the financial burden of installing ramps in their homes and purchasing vehicles needed to transport the boys. Each day has a purpose and a mission – goals so large that people may believe they are being unreasonable.
When we initially met with Christine and Sue from the Jett Foundation, we spoke about the challenges they faced as an organization and how our team could help them. Communication was the area we as a team decided that we could help the most. Their current methods included updates via text, email and even Facebook messages. Their team has a lot of part time employees and keeping the team up to date on the progression of events was difficult and they spent a lot of the time they had together sharing small updates. As a team, we quickly realized that they did not necessarily need a fancy technical solution, rather a process to be more efficient in what they already did great. The Jett Foundation and the Duchenne Alliance, which they are part of, operate under the sentiment that they are in a race against time and our intent was to create something that freed up time and energy for them to focus on things that would make an impactful difference.
As a team, we created mock ups and a final version of a project dashboard where they would be able to store all their projects, past and present. Our hope is they would be able to go back and reflect upon past events on how to improve them in the future. Michael and Bernard took it upon themselves to learn a new programming language to build the program. Two weeks is a difficult timeline to build a program, let alone learn something completely new and create a project using these new tools – but they were incredibly successful in their efforts. As I mentioned off the bat, I’m a passionate person. My biggest growth through this project was not getting blinded by that passion. Rather than getting focusing on what I thought was the best solution, I learned to take a step back and consider other options. It’s a skill I’m working to incorporate in to my day to day activities as I believe it is incredibly applicable to my role as an account manager.
We did not create anything earth shattering, but if our product does nothing else but free up time for the team to discuss impactful ideas and plans, I consider it a success. As a non-technical person, I worried about how I could contribute to the project. Michael and Bernard empowered me to create mocks on post-it notes and on my computer. I found my voice in questioning ideas that I didn’t think would be beneficial to the Jett Team in the product and I also found value in seeing an idea and an opinion that differed from my own. These two weeks were a challenge mentally and emotionally, but I’m honored and grateful that I was given the opportunity to help the Jett Foundation continue to do the great things they are doing.