The Brain Tumor Society's Ride for Research
This is an extended version of the article published in the 2003 Ride for Research brochure. We are grateful to The Brain Tumor Society for selecting Faith's story to highlight the importance of their major fundraising event.
When Marilyn signed us up for the 2002 Ride for Research, our goals were simple: pay honor to our daughter; raise some money; take a ride. What else could there be? As it turned out, our involvement with The Brain Tumor Society was to serve as a great source of healing in dealing with the loss of Faith.
Ride for Faith
Our ride was dedicated to the memory of our daughter, Faith Emily Altbush, who died of a brainstem glioma in December, 2001. She was eight years old.
The moment of Faith’s diagnosis changed our lives forever. Such a devastating and tragic experience left us standing in the rubble of our own personal ground zero. How do we go on from here, we wondered? It is one of life’s great lessons that we can now appreciate how Faith’s special qualities got us through. Her tranquility, her happiness, her boundless love and her bravery buoyed our spirits at every step and inspired us. In our brain tumor journey with Faith we had 19 months from diagnosis till her passing.
Ride for Advocacy
Following Faith’s passing, we returned to bike riding, an activity that had previously been a major part of our lives. In early 2002, we planned our involvement in The Ride for Research. But we also looked for other ways to stay connected to the brain tumor community. In May 2002, we attended a brain tumor conference in Washington, D.C.
As part of this conference, attendees were given the opportunity to lobby their Congressional representatives to discuss pending legislation that could have an impact on research and treatment for brain tumors. The idea of being a congressional lobbyist was intimidating. And the realization that Faith’s illness had given me a reason to lobby shocked and saddened me. Had Marilyn not signed us up for this activity, I certainly would have deferred. The conference organizers scheduled appointments on our behalf and on Tuesday, May 7th, we made our visit to Capitol Hill. In a most unexpected twist of fate, we were paired with another conference attendee — Neal Levitan, Executive Director of The Brain Tumor Society.
Working with Neal that day was an enlightening experience. We gained insight into the goals and operation of TBTS (including the Ride for Research). We developed a much fuller appreciation of the issues we were about to lobby on. But the greatest insight came during our first lobbying effort.
As we presented our issues, the true nature of what we were doing suddenly hit me. We were taking our continuing love for Faith and crystallizing it into a moving force for over 185,000 people each year whose fate will bring them the shattering news of a brain tumor diagnosis. We don't have to know who these people are or ever meet them. We know what their lives will be like. At that moment, in that office on Capitol Hill, we had an opportunity to help.
The idea of helping others as a constructive way to deal with grief was a remarkable revelation. Our involvement in The Ride for Research took on a new meaning. Our fund raising was not simply about money and medical research — it too was an act of brain tumor activism, advocacy and caring.
Ride for Healing
Not having participated in a charity event before, I thought that the most important aspect of our participation would be the fund raising. But the ride itself turned out to be a learning — and healing — experience.
There is something special about group rides. There is an energy that lets you go farther and faster than you could on your own. We were spurred on by our memories of Faith. We were spurred on by the hundreds of other cyclists. But there was another dimension to the constituency of the group. Each cyclist was issued a ride bib, which included an area for personalization that said, "I’m riding for ______". We read these names throughout the day and rode for those people too.
Did we grieve while on this ride? We grieve all the time. But this event gave us the opportunity to work as a team along with others in the brain tumor community. The Ride for Research brought us together so that we could transform our emotions into a positive force for the benefit of others.
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