Question, Listen, Act and Never Give Up

By Katherine Price Snedaker, LCSW, RCP (CEO and Founder, PINK Concussions)

In 2008, when my child experienced his first concussion, I did not know anything about brain injuries or how to find help. When his single concussion turned into a series of concussions, I became a mama bear desperate to find information how to help. There were only a few books on the topic at the bookstore and his pediatricians could not answer more than the basic questions. As it was only a few hours by train from Connecticut, I took my son to see Dr. Bill Meehan at Boston’s Children with a list of questions. Dr. Meehan congratulated me on asking some great questions to which he told me there were not yet any answers. This exchange gave me confidence that I was at least asking the right questions, and I was inspired to go look for the answers.

I started educating myself by going to concussion conferences for medical providers. At my first concussion conference in Connecticut, I wasn’t even sure they would let me in the door since I was a parent/social worker and was not officially a medical provider. Dr. Bob Cantu and Dr. Mike Lee were debating the concept of “complete rest” after concussion, and the need for research on the topic. This experience opened my eyes to the importance of research, the need for evidence-based treatments and how the field of brain injury was still very much evolving. After the event, I established a concussion account on Twitter, @SportsCAPP, and used it to reach out to researchers and experts in the field.

Over the next few years between tweets, calls and attending over 14 concussion conferences, I just keep asking questions to the experts like Dr. Cantu, Dr. Mike McCrea, Dr. Gerald Gioia, Dr. Elizabeth Pieroth, Dr. Brain Hainline, Dr. Kristy Arbogast, Dr. Arlene Greenspan, Dr. Ruben Echemandia and more. So many experts listened to my questions and shared their knowledge with me. Dr. Gioia shared with me later he initially thought I might be a following him around as I was “everywhere.”

At the time, I was not planning on educating sports families on concussions or later founding a website to share information on concussions and women/girls, I was just hungry for answers about my son’s injuries and my own history of concussions. But as I begin posting about what I was learning on Facebook, other parents started calling me to ask their questions.

As my son had been injured during the phase of “Complete Rest or Cocooning,” which was based on several doctors’ experience, not peer-reviewed research, I had learned the importance of sharing only evidence-based information, not opinion. My desire to help others was perfect timing with the newly-created CDC’s Heads Up materials which are free, easy to order and perfect to use to educate athletes, coaches and families.

I started sharing the CDC Heads UP information with my own youth lacrosse league and then was asked to come talk to other sports organizations and parent groups. I presented to all types of youth sports in my county as well as PTAs and then school nurses. I would, in the next year, be called to share information at the Connecticut State Capital and be called by the National Football League to share my experience educating parents. One of the greatest honors at the time was to be asked to testify in 2012 at the IOM Hearings on Youth Sports Concussions. I went to DC to testify thinking I was representing Connecticut and it turned out I was representing families at the national level.

I also hosted a middle school dance called the “Head Bangers Ball” where students had to share a concussion symptom in exchange for their refreshments and got CDC flyers as they were walking out of the dance to put in their parents’ car gloveboxes. Local students began to help as interns and the PINK Concussion family began to grow. I was part of a group of mothers who wanted to update the concussion laws in the state, and I realized the need to provide training for school nurses. I was able to reach out to local colleges to donate conference and produced four events in 2014, to educate over 400 school nurses.

While I was completely content sharing about sports concussion over and over, I came across the same question I could not answer from families of girls, “why are our daughters taking longer to recover?” I listened to their questions, and politely shared I had no idea, but I could not escape the desperate pleas. So initially out of exasperation, I figured I would look for some answers for these girls. I went back to the research and found the data hidden in subsections in papers rather than in the titles.

One such example, was in 2012, the American Medical Society for Sports Medicine published a position statement on concussion in sports, which stated:

• In sports with similar rules female athletes sustain more concussions than their male counterparts.
• Female athletes experience or report a higher number and severity of symptoms as well as a longer duration of recovery than male athletes in several studies.
• Oestrogen and differential cerebral blood flow may also play a role in influencing concussion severity and outcome.

So with excitement that there was research on the topic, I began a new round of questions on women and brain injury. I was lucky enough to speak to Dr. Odette Harris and, at the IOM event, members of the Navy and Army testifying conference as well as Tim Kelly from West Point who all confirmed what I had found in the research. From these conversations the website for PINK Concussions was born. The website launch opened a floodgate of more teen girls who had been isolated from their schools and sports during their slower than expected recoveries as well as brain injured women who had been forgotten by the medical community.

And over the last ten years, I have focused my efforts on educating the public, press and the medical community on these two specific messages:

1. Brain Injury in women has many sources – sports, accidents, domestic violence, and military services – no event should ever focus on just one type and researchers need to work together to find answers and not stay in their silos separated by mechanism of injury.
2. The findings of the 2012 American Medical Society for Sports Medicine position statement.

It has been an amazing journey, and along the way. So many experts, women, girls and parents/caregivers have volunteered their time to help. Nothing would have been possible without the efforts of so many people, interns and PINK Advisory Board Members. I have been so privileged to I have been an author on nine papers in peer reviewed journals, been interviewed in the press, given hundreds of presentations and moderated Facebook support groups for thousands of women and girls.

In closing I would like to share up some practical tips that I believe persons with TBI, care partners, or clinicians can use to become better advocates for themselves or others.

1. Ask questions to experts
2. Research evidence-based articles online and check back often stay updated
3. Attend brain injury conferences in your state
4. Join Twitter and follow brain injury researchers, doctors and brain injury organizations
5. Use your own social media to connect to others and share information about brain injury (always include the source) and let other people in your network know you are willing to share about brain injury and always say yes when being asked to speak – it maybe a small group but if you help one person, you are a success
6. Never settle for the status quo as medical research is always expanding what we know to be true
7. And NEVER give up!

And it will certainly take you! Your voice, your message, does make a difference! Thanks to all of you who have and to those who will!