Who I ride for…Please Support the 2016 Boston Brain Tumor Ride

Over 300 stories. 300 unique experiences. Patients, survivors, family, friends…everyone in some way had a connection to the devastation caused by brain tumors. To sit in a room with these 300 people was humbling because they represented a web of countless others whose lives have been impacted by a brain tumor.

Last week, I was in D.C. with these 300 individuals from across the United States for the National Brain Tumor Society’s Head to the Hill advocacy event. Together, we pushed Congress to support the brain tumor community. Over 700,000 Americans are living with a brain tumor. That number though does not fully capture the scale of this problem. If you are familiar with my story, you know that so many others, including my family and friends, have been impacted in some way by my cancer. This disease changes lives, both for patients and caregivers. If we are to truly give justice to the impacts left by brain tumors then we need to consider all the lives that are changed. The children who loose a parent too soon. The parents who have to do the unthinkable, and say goodbye to their children for the last time. The husbands and wives, whose partners depart far too early.

Since my recurrence I have had the fortune to meet some of the most incredible people, patients and caregivers, who are dealing with a brain tumor. One of these groups that I am incredibly proud and lucky to be a part of is the Massachusetts advocacy team for Head to the Hill. Advocating for the brain tumor community at the Capital is rewarding, but what I love most about going to D.C. every year for this event is meeting all of the other advocates. They are the epitome of perseverance, courage, hope, and love.

This year it was great to see old friends, and meet some amazing new people. It was surreal to think that it had only been a year since I was at the Capitol pushing through my first round of chemotherapy. A year ago, I could only focus on the present because the future was so uncertain, but last week I had the privilege to talk about and look towards my future. I am incredibly lucky my journey has turned out this way. Some people from our team last year were not able to make it to D.C. because their tumors had progressed. They are the reason I went to D.C. again for my second year, and why I continue to ride in the Boston Brain Tumor Ride.

They and their caregivers are my heroes. Despite overwhelming diagnoses, they have embraced life, supported others, and brought light and love to everyone around them. I have only met these families a handful of times in person, but they have taught me a lifetime of lessons. 

In just 5 days at the 2016 Boston Brain Tumor Ride, I will ride for them. I will ride for the mothers I have met who fight for their children even after they have passed. I will ride for the young adults I have met at Dana Farber who gracefully balance uncertainty and living. I will ride for the fathers and mothers, brothers and sisters, husbands and wives, boyfriends and girlfriends, children, and countless others whose lives have been impacted by a brain tumor. I ride because I can, and sadly many others cannot.

More than a year following my recurrence I am doing well not because of anything I have done, but simply because I am lucky. Lucky to have a tumor that is slow growing. Lucky to have access to the best medical care and resources available. And lucky to have the support of my family and friends. With this privilege, I have a responsibility to stand up for and support the brain tumor community. We are on the cusp of so many great discoveries in improved treatments, and perhaps someday a cure. But we won’t get there unless we all come together to take action. For all of those who are, and for all of those who will face a brain tumor diagnosis, please donate to the Boston Brain Tumor Ride.

Click HERE to join and/or donate to our team for the 2016 Boston Brain Tumor Ride

 

What Life’s All About

The Boston Brain Tumor Ride last Sunday could not have been a better day.  It wasn’t just the beautiful weather, scenic bike routes, festive environment, or the fact that I received two Red Sox tickets afterwards.  No…what made Sunday a day I will never forget is all of my family, friends, and community who came together to support me, to support each other, and to support the larger brain tumor community.

In a speech I gave after the ride, I mentioned that coming to terms with my own mortality has made me more understanding of the importance of the present, and that it is in the present where I draw my hope and strength.  Those words could not have been more true than on Sunday.

Quite literally actually, Sunday was the best I felt health and energy-wise since starting the chemo cycles two and a half weeks ago.  After finishing my first chemo cycle, I felt pretty fatigued to the point where I was unsure whether or not I would attempt to even get on a bike.  On Sunday morning though, I managed to complete the 10-mile ride, gaining energy as I biked along the route.

This wasn’t some miraculous achievement I pulled off, rather, it epitomizes what I have believed and continue to believe since my original surgery in 2004:  that what keeps me going, the reason I am still here today, is the support of my family, friends, and larger community.

I truly believe I was able to bike the 10 miles because of the energy of everyone around me both there in person and afar.  This ride was a success not because of one individual, but because a community came together to be there for one another.  Together we raised over $35,000 for brain tumor research!  But our success goes beyond the number of dollars raised…it includes the community of hope that was forged.  That community includes the over 45 riders in Boston, Chicago, and Bali…the more than 500 people that donated to our team…and the countless messages of support in the months leading up to the ride.

After my speech, I received a heartwarming hug from a mother whose son passed away at 23 years old, my age, from a brain tumor.  In our brief moment of embrace I apologized for her lost, but she responded by thanking me for continuing to live on in the way she would have wanted for her son.  And that’s really what this is all about…

On Sunday and in the months leading up to the ride what united us was not just the impact of brain tumors, it was an appreciation of and love for life.  It was recognizing that what life is all about is being there for one another.

To me, recognizing the importance of the present means appreciating all of the people by your side.  And just like the success of the ride could not have been achieved alone, my journey with brain cancer will not be one I walk alone.  I had the amazing privilege on Sunday to witness all of the support I have.  With that privilege, I believe, comes a responsibility to in turn be there for all of those around me…my family, friends…my community.  Because when it all comes down to it, what is truly important in life is being there for each other.

So thank you for being there for me, for giving me strength, and for giving me hope.  It was a day I will never forget, so let’s keep on riding…and keep on living!

Check out photos from the weekend below:

The Boston Brain Tumor Ride is finally here: Help us reach our goal!

The weekend we’ve all been waiting for is finally here!  This Sunday is the Boston Brain Tumor Ride!

We are so close to our goal of $30,000 that will help spark new research for the National Brain Tumor Society’s Oligodendroglioma Research Fund and Pediatric Initiatives.

Please help us reach our goal by following this link and donating:  http://www.braintumorcommunity.org/site/TR/TeamraiserEvents/BostonBrainTumorRide?px=1085407&pg=personal&fr_id=2410

No amount is too small.  Every dollar raised provides hope for people like me around the country and the world impacted by brain tumors.

Uniting for a cure

1 Month from Ride Day: Please join and donate!

It is exactly one month until the 2015 Boston Brain Tumor Ride!!!

So far we have 29 riders signed up on our team, and have raised over $16,000!

Thank you to everyone who has already contributed to the ride.  Our goal is to raise $20,000, but I know we can raise even more.

Please consider signing up and joining our team!  Even if you can’t be at the event in person, you can still participate from where you live as a virtual rider!  Follow this link to JOIN OUR TEAM!

It is going to be a great day riding for such an important cause.  All of the money raised will go to advancing brain tumor research, developing treatments, and finding a cure.

Also, as a bonus, everyone on the team will get a T-shirt with the fantastic design shown above.  Thanks to Laurie Bean and Neil Quigley for putting together the amazing design!  It represents how our team is made up of people from all around the world, supporting a cause that impacts hundreds of thousands of people worldwide.

If you can’t ride, please consider donating HERE.  No amount is too small!

Below is part of a Facebook Interview I did with the National Brain Tumor Society about why this ride is so important to me:

4) Why is raising funds for the National Brain Tumor Society important to you?

Raising funds for this event has always been important to me because I want to see a day when kids and their families don’t have to go through the experience I had in my childhood. A brain tumor diagnosis comes with a lot of uncertainty about the future,and a lot of pain not only for the patients, but their family and friends as well. This past November, during what was supposed to be a brief Thanksgiving vacation home, I found out my brain tumor had grown back. At 23 years old, when I finally felt like I had moved forward with my life, the news was devastating. Suddenly, my life was on pause, brought back into the whirlwind of appointments, tests, fear, and anxiety. Because of the location of my tumor in the motor strip, it is not possible to operate without paralyzing my right side, but I am not without hope, and that is because of the advancements being made in brain tumor research. Since my original diagnosis in 2004, the way we approach and treat brain tumors has evolved tremendously. I just recently finished proton beam therapy, and will begin a year-long cycle of oral chemotherapy. This will hopefully keep my tumor at bay long enough for new treatments to be developed, which will only happen if there is funding for brain tumor research. I am lucky that my tumor is currently slow-growing, providing me with the time to wait for the development of these potential treatments. I am definitely not alone in my situation, and many people do not have the luxury of time to wait. Thousands of people around the United States and across the world hold onto some hope that treatments will be developed, and cures will be found. It is truly a global effort, one that doesn’t get nearly enough funding or attention it requires. With the ease of communication and social media, it is finally possible to grow a movement worthy of the cause. That is why we need as many people as possible to raise funds for the National Brain Tumor Society, whether it is at the ride in Boston, at another event, or virtually, because the larger the community, the more hope patients like me will have for a better future.

‘Serendipity’…a story of friendship and support

My best friend from Indonesia, Tya, wanted to learn how to use an animation program.  She chose to make her first video about our serendipitous friendship, as well as raise awareness about the National Brain Tumor Society’s Boston Brain Tumor Ride.  Tya is helping organize a group of virtual riders who will participate in the ride on the same day from Bali.  If you believe in advancing research for better treatments and a cure for brain tumors, I encourage you to join Team Jeremy May 17, 2015 no matter where you are in the world.  These funds will support research that will create long-lasting benefits for all people affected by brain tumors.

Click HERE to go to the team page, and join as a rider!

Thanks Tya for making such a great video and I look forward to riding with you all from opposite sides of the world on May 17th!  Tya is writing an awesome blog too about various activities people can do to step outside the ordinary schedule of their day and try new things.  Check out her blog at #363UnlazyDays

Calling all riders…join “Team Jeremy” to support brain tumor research!

Calling All Bike Riders!!!

For the past 10 years, the Boston Brain Tumor Bike Ride has been a way for me to give thanks for all of the support that I have received since my original diagnosis in 2004. It has also been a way for me to give back and raise funds so that others one day don’t have to go through living with a brain tumor. This year, on our 11th year riding, it is surreal and slightly scary to write that my long-term survival and quality of life depends on advancements in brain tumor research. Finding a “cure” was always an abstract idea for me, but now it is my source of hope, and the source of hope for the hundreds of thousands of others throughout the country and the world who depend on advancements in medical treatments and research. Unfortunately, in the cancer research realm, brain tumors receive relatively little support. That is why it is up to us all to take a grassroots effort, under the umbrella of the National Brain Tumor Society, to raise the funds that are needed for these life-saving medical developments. To do this, we need numbers…we need riders. The more people who ride, the more funds we can raise towards advancing brain tumor research.

This is no longer some abstract goal; the possible treatment advancements are real, and the benefits these advancements can have on countless lives are so important. The hardest part about cancer is the uncertainty. Most of you already know about my experience living with brain cancer through this blog. We have spent the past month narrowing down the possible treatment options, and at every turn there has been uncertainty because of a lack of knowledge…a lack of research.

My doctors are optimistic about my short term prognosis, but the reality of my cancer, and most other brain tumors is that they almost always recur. I will be starting proton therapy and chemo treatment with the hope that it will buy me enough time for new targeted therapies to be developed. Otherwise, in the future I will likely have to undergo surgery and sacrifice movement on my right side, or risk the tumor evolving into a more aggressive form.   These medical advancements are only possible if there is enough funding, so from me and all of the other people living with brain cancer, I ask that you join us for the Boston Brain Tumor Ride on May 17, 2015!

Join Our Team!

If you are in the Boston area:

Join us on May 17, 2015 in Waltham for a fun-filled bike ride around the greater Boston area with family, friends, and hundreds of other riders!

What if I can’t be at the event?

Become part of our team’s virtual riders! Even if you live in other parts of the U.S., or the world, you can still ride too! Last year, to commemorate my 10th year riding, I biked with my friend in Bali on the same day that my family participated in Boston. Together we raised over $10,000! Organize a route with friends in your local neighborhood and city, fundraise along with our entire team, and enjoy the day being part of what I hope will be a worldwide community of family and friends fighting for a cure. I plan to compile the photos of everyone riding, and develop a collage to represent the universal support for those living with brain cancer.

The $500 dollar fundraising minimum is a lot! What if I don’t have a bike? What if I can’t ride the entire route?

Take a deep breathe, and don’t worry. $500 is a lot of money, but if you think about all of your family, friends, and co-workers in your life, a lot of small donations from a large support network can easily help you reach your fundraising goal. If you can’t reach the minimum by yourself, team up with a friend to raise funds under the name of one rider. If you don’t have a bike and want to still participate, I will help write a personal letter to your local bike shop explaining the cause, and ask them to donate the bike to you for the day. While there are set routes at the Boston ride, you can ride however many miles you wish. I will be undergoing chemo and may not be able to ride in May, but I am still going to join as a rider because the most important part of this event is raising funds for brain tumor research, and being part of a wider team and community of people who want to make a difference.

Join Our Team!!!

Click here to go to the “Team Jeremy” page and click “join team”. If you can join us in Waltham, register as a “rider”, and if you can participate from afar, register as a “virtual rider.”

I am confident that the larger our team, the more funds we can raise for brain tumor research. Also, bike riding in the spring with friends and your community is fun! This team gives me hope for a better future, and this ride is a source of hope for thousands of others living with brain cancer. Wherever you are in the world, together we will one day help find a cure.