27. What's next... a nonprofit for concussions

Last December, an article came out in the New York Times about concussions in women’s hockey.  The article outlined some of the issues surrounding concussions in the sport and chronicled pieces of my own story along with a good friend of mine, Josephine Pucci. 

Josephine played hockey at Harvard and suffered a concussion in 2012 that caused her to take a year off from school.  She had a lengthy year-long recovery and fortunately healed in time to earn a spot on the 2014 Olympic Women’s Hockey team, where she earned a silver medal in Sochi. 

Jos and I have known each other for over a decade, and we reconnected after I suffered my concussion towards the end of 2013.  By that point Josephine had already made a full recovery, and I was just beginning to embark on this crazy journey.  She helped me through some tough times as I navigated the ups and downs that ensued.  She lived it herself, so she knew too well how important the support was. 

During some of our conversations, we talked peripherally about the idea of doing something to help address concussions.  We knew first-hand how difficult and devastating an injury like this could be, and both of us had the desire and drive to help out in some way.  But ideas are just ideas and talk is talk.

So, at first, nothing of substance came out of those discussions.  But then the Times article came out, and many of the pressing issues surrounding concussions were back on our minds.

We decided to grab dinner and talk about it a little further.  

The conversation started as it had so many times before.  “This really sucks that concussions are still a big issue.” “Yeah it really sucks.”

But then it shifted to, well… this absolutely sucks but what can we do?  How can we help? If we did something, what would it look like? What change do we really want to see and, more importantly, how could we play a role in achieving that change?

These were daunting questions.  Concussion is a daunting issue.  So much talk.  So many opinions. So many factors to consider.  Yet so many still suffering. 

So what could we do?

The idea of creating a non-profit came up.

At first, it was all high-level talk.  Like, “Oh, maybe we could do that.”

Or, “Let’s look into this a little further before we commit.”

Or, “Well there’s a lot we don’t know about starting a non-profit so maybe we should do some research, and just see...”

Then we went from talking every couple of months to everyday, shooting each other emails with ideas, with articles and links, with new research and information to share.  We actually never even had that definitive conversation where we agreed to start a non-profit.  We just started the process because we got excited about it. 

Next Steps

Not long after this, we gained a third team member.  

Danny Otto played on the Yale Men’s Hockey team and had his career cut short after sustaining a concussion in 2011, two years before my own. We reconnected over the summer of 2015 after he suffered another major concussion playing pick-up hockey. At that time, we were both still struggling to find the proper medical care, feeling overwhelmed and discouraged as we dealt with symptoms that felt unshakeable.

Rewind about five years before this:

I was a healthy college student, and concussions were a foreign concept to me. After a busy day filled with classes, practice, lift, work and any number of other things I occupied my time with as a student at Yale, I went to visit Danny in his apartment while he was recovering from his first concussion. Not long after I arrived, I asked him what he had done that day.

His answer:

“Nothing.”

It was difficult for me to fully understand the gravity of this response. To the naked eye, Danny looked completely fine. My eyes saw someone that looked healthy and didn’t have any visible impairment of any kind to signal that something was wrong. 

Yet he was suffering from post-concussion symptoms so severe he couldn’t even leave his bedroom; trapped within the confines of his one bedroom apartment because the world outside was too overwhelming, too stimulating… too painful.

I sit and reflect on that memory now as I approach the three-year anniversary of my own concussion. My heart hurts for the time I lost while lying in a dark room, for the time Danny and Jos lost, but even more for those who are still stuck in that dark room; for those who are suffering from an injury you cannot see; for those who are hurting and need support.

This is what motivated Danny, Jos and I to take action; beginning with one simple goal: to help limit the number of people suffering the debilitating and unpredictable effects of concussions.

So we got started and soon we had a name: Headway Foundation. I’m laughing to myself because it took way too long to settle on this name, and even longer to settle on a slogan and logo. But whatever, we did it. And we think it looks pretty sharp.   

All the while we continued with the process – register as a non-stock corporation with the State, find lawyers (huge shout out to Arent Fox in DC!), establish bylaws, file the 501(c)(3) tax exemption application with the Internal Revenue Service, bring in more team members and lastly but most importantly, establish a vision for the organization. We had so many ideas about ways to help that it was overwhelming; but we narrowed our scope and set realistic goals.

The Goals

Each of us have fairly type-A personalities. We like structure and organization, so we developed our goals around three categories: Awareness, Aid and Advocacy. It was a major bonus that each of these words started with the letter A.

Within this framework the brainstorming began and pretty soon we developed ideas that collectively address several stages of concussion – beginning with prevention and symptom reporting, and extending to treatment, support and recovery. 

Awareness

First is awareness. Although concussions continue to get a lot of attention, we saw a need for a patient-driven initiative; an organization that takes a peer-to-peer, athlete-to-athlete approach; a group that acknowledges the science and statistics behind this injury, but also embodies a level of genuine realness that people can relate to and connect with.

So we started off with a campaign that engages athletes directly. As recent college athletes ourselves, we know firsthand that the sports culture surrounding concussions can be improved. We’re addressing this by reframing the conversation around concussions in a way that resonates with athletes on a deeper level.   

We’ve created a page on our website dedicated to this, and we centered it around a relatable and familiar term in an athlete’s vocabulary: toughness. The reality is that handling concussions the right way is tougher than most people think, and we want to acknowledge and commend this “new” type of mental toughness.

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I started writing about how and why we came up with this “New Tough” campaign, but quickly realized I could devote an entire post to it. 

So I will hold off on the details for now and instead invite you to check out our New Tough page here.

Aid

Our second important goal is to provide knowledge and resources for concussion patients seeking medical care.

This starts with education.

So we’ve collected the latest literature on concussions and broken the information down into digestible, reader-friendly terms. We’ve highlighted some of the nuances of concussions, particularly surrounding recovery, that weren’t readily available to us during our own journeys.  

After citing over sixty sources of medical literature, we feel pretty good about our education section (shout out to Sarah Renberg for playing a big part in this!)  We not only define concussion, but we also break down the various factors related to Post Concussion Syndrome, explain why removal from play is important immediately following a concussion, cite neck strength as a promising measure for prevention, and provide recovery tips as well as recommendations for coaches and parents to better support athletes.

It’s also important for us to provide resources that extend beyond education.  We’re talking authentic, meaningful, peer-to-peer support.  We know too well that recovery can sometimes be long, isolating and difficult, especially when a patient begins suffering from longer term issues such as Post Concussion Syndrome. It is important to have a strong support system during that process. 

So we’ve created a support program called the Concussion Circle.  

Patients can fill out a questionnaire on our website and we will connect with them.  We’re excited to see how this grows, but right now we just want to make sure people feel supported, whether it’s through a simple phone call or a care package to help pick up their spirits during a tough time.

Advocacy

Next is advocacy. This one is pretty straightforward and yet perhaps the most daunting.

Each of our recovery journey’s reflect the gaps in concussion management.

All three of us had no choice but to seek help outside of the mainstream medical field for proper care.

And we have met countless individuals who are suffering every day, who have left countless doctors’ appointments with unanswered questions and misguided advice, and who are blindly shooting in the dark with various concussion treatments, desperately trying to get help and to return to some semblance of a normal life after their injury.

We aren’t doctors, but our personal experience has tremendous value. We want to leverage that background and collaborate with experts in the field to enhance evaluation and treatment protocols. We want to provide the voice of the patient and the athlete; to bring individuals in the medical field with various specialties together, and to work with organizations to ensure that individuals are supported and receiving the most up to date, comprehensive and holistic care.

My recovery

When we first started Headway, I was still knee deep in my own recovery; I had just found the MyoWorx program and was finally starting to make meaningful strides with my symptoms. It was really therapeutic for me to work on Headway during this transformative time, despite the challenges of working while still experiencing symptoms.  There’s been a lot of times when I’ve second guessed myself during this process, and even more times when I’ve wished my life had nothing to do with concussions anymore.

But what’s kept me going is the hope that someday people won’t have to experience the same struggles I did. It is a crazy thing for me to reflect on – but what I know now is that had I received the correct care immediately after suffering this injury, my recovery would have been very different.  The two most painful, challenging and heart-wrenching years of my life could have been erased.  The abrupt end to my hockey career.  The deterioration of my health and unbearable increase in symptoms.  The leave of absence from my consulting job.  The debilitating nervous system disorder I developed from faulty prolotherapy injections. 

None of it had to happen.

And then I think about the thousands upon thousands of people out there who have fallen into the same trap of failed medical care.  All the people who are suffering when they don’t have to be.  Those who feel like they are doomed and incurable…. when they actually aren’t. 

In the end this is what motivates me to remain in the conversation. I’m not sure how much of an impact Headway will have, but it feels wrong not to try and help in some way, no matter how small of a scale. I know Jos, Danny and everyone else on our team feels the same way.

Hit us up

So, after months of working on this project, we are officially launched. We have a website, we have t-shirts and stickers, we have six pretty impressive advisory board members and some cool “New Tough" athletes, and most of all we have a lot of passion.

If you want to collaborate in some way, to have us speak at your school or for your team, or to just talk about things, you can hit us up here!

If you want to buy a t-shirt, check out our gear page.

If you like what we’re about and you want to help out financially, we welcome contributions of any size on our donation page below. I’ll end by sending out a huge thank you to everyone who helped us get to this point. You know who you are, and we couldn’t have done it without you!