Over the past seven years, Riley Callen has had three separate craniotomies to remove two benign (non-cancerous) brainstem-based tumors. Through her experiences, she has developed a passion for raising awareness in support of brain tumor and cerebrovascular disease research.

Soon after Riley’s 2015 craniotomy, she voiced her desire to do something about what kept happening to her. At first, she had a hard time explaining what it was she wanted to do, but it soon became apparent that she wanted to take control of what most would deem an uncontrollable situation. At the young age of 12, she was already tired of standing by and nervously wondering each time she has a routine MRI if it is going to change her life. What she wanted was to become a part of the solution.  She wanted to help find a cure, not just for herself, but for everyone out there with the same diagnosis.

None of us know what the future holds, but the future prospect of recurrence has inspired Riley on this quest.

This Effort Is Called Be Brave For Life

Riley Callen – Founder

My experience with Be Brave For Life has been like no other. When I moved to Vermont, I never would have expected that I could get my entire community to come together and create what we have. Through this experience, I’ve learned things that would take most people a lifetime to figure out. I’ve learned how to be brave by approaching and talking to complete strangers, something that my younger shy self would blush at the idea of. I’ve also learned to become patient and that you shouldn’t take everything to heart. I’ve learned that public speaking isn’t too difficult when you’re talking about something that you are truly passionate about. And most importantly, I’ve learned that you can achieve anything that you aspire to; you just need to find the right people to guide you. Anyone that shows an interest in what my “be brave family” has been able to accomplish will always have an special place in my heart.

 

– Riley Callen

Brainstem-Based Tumors

Riley’s tumors, vascular lesions called cavernous malformations, have both been located deep within her brainstem. Brainstem tumors are extremely challenging to remove because the brainstem controls all vital functions of our bodies, such as breathing and heart rate. Often patients who undergo a craniotomy to resect a brainstem tumor are left with permanent neurological damage. Riley has suffered such damage. Our goal is to raise money for brain tumor and cerebrovascular disease awareness and research, as well as for the associated risks related to their removal.

How It All Began

Young Riley

During the summer of 2011 when Riley was only 8 years old, she woke up one morning with partial left side facial paralysis. An MRI revealed that Riley had a cavernous malformation in her brain stem, a rare vascular brain tumor, that had hemorrhaged and caused the weakness in her face.

After a failed craniotomy in NY in August of 2011, her parents found Dr. Robert Spetzler in Arizona, a world renown vascular neurosurgeon. On October 3, 2011, he successfully removed the tumor, but Riley was given a 20% chance of recurrence at some point in her life. Since the tumor was located within the brain stem, the part of the brain that houses many of the control centers for vital body functions, Riley lost hearing in her left ear as well as her ability to move the left side of her face. Five reconstruction surgeries later, Riley has a platinum weight in her left eyelid so that she can close that eye; a muscle and nerve transfer from her foot and leg to the left side of her face, so that she can smile; and a hearing implant in her skull, so that she can hear.

Despite all these surgeries, Riley is the most upbeat and positive young lady you can imagine.

Unfortunately, in November of 2014, a routine MRI revealed that the tumor had grown back. In early January 2015, Dr. Spetzler went back into her brain stem and removed the cavernous malformation once again. While we believe the operation was a success, Riley spent the next four months in and out of Massachusetts General Hospital, fighting chemical meningitis. She also now has double vision and a loss of sensation and the ability to differentiate temperatures on the right side of her body.

Regardless, she continues to live a normal, active and happy life. Her spirit has not been deterred and she continues to work diligently to raise awareness and funds for brain tumor and cerebrovascular disease research.

Awards and Honors

Patriots Chairman and CEO Robert Kraft, Riley Callen, and Patriots and Pro Football Hall of Famer Andre Tippett at the award ceremony

On June 12, 2018, the Kraft family and the New England Patriots announced the Myra Kraft Community MVP Award winners for 2018. Riley was of twenty six volunteers recognized for their contributions at an awards ceremony at Gillette Stadium. The award celebrates those who give their time to help others while exemplifying leadership, dedication and a commitment to improving their communities through volunteerism.  Riley was awarded $10,000 to support Be Brave for Life ‘s mission.

It means a lot to me to be selected for this award. I know that not a lot of kids my age have won this award so I am honored to represent all high school and middle school age kids who are striving to make a difference. My hope is that Be Brave for Life is able to raise enough money to support research for a cure for all types of brain tumors, and an important part of that is to raise awareness.

 

-Riley

In September 2017, Riley was honored as a recipient of The Gloria Barron Prize for Young Heroes.  The Barron Prize celebrates inspiring, public-spirited young people from diverse backgrounds all across North America. Each year, the Barron Prize honors 25 outstanding young leaders ages 8 to 18 who have made a significant positive difference to people and the environment.

Michael Phelps, Gabrielle Metz, and Riley Callen at the Prudential Spirit of Community award ceremony

On February 7, 2017, the Prudential Spirit of Community Awards program, which is the largest youth recognition program in the US-based exclusively on volunteer community service, announced Riley as one of two Vermont recipients for their Spirit of Community Award. Riley received a scholarship and an engraved silver medallion.

On May 6, 2017, she joined the top two honorees from each of the other states and the District of Columbia in Washington D.C., for a 4-day trip to honor their stewardship. At the event, she was chosen as one of ten National Honorees and received an additional scholarship of $10,000 ($5,000 for Be Brave For Life and $5,000 to be used for higher education). Since its inception in 1995, this program has recognized more than 115,000 young people who’ve made a difference – and inspired countless others to consider how they might contribute
to their communities.

Riley Callen and Robert Demont at the Association of Fundraising Professionals Northern New England Chapter Annual Conference

On November 3, 2016, Riley was honored at the Association of Fundraising Professionals Northern New England Chapter Annual Conference in Portland, Maine for her work with Be Brave For Life. Their Demont Youth in Philanthropy (YIP) Committee unanimously selected Riley as the 2016 YIP Award winner and recipient of a scholarship. The award recognizes service by an individual aged 10 to 17 who demonstrates outstanding commitment to the community through direct financial support, development of charitable programs, volunteering, and leadership in philanthropy.

 

 

Sponsorship of this award provides us and our colleagues with as much satisfaction as anything we do each year, so we are honored to highlight Riley’s commitment to leading others in her humble way.

 

-Jeff Fuller, AFP-NNE President and Robert Demont, Demont Associates