Feb 6, 2019 By Katrina Kahl – Brian Grant Foundation
In 2009 I was working at The Michael J. Fox Foundation when we received a call from a former NBA player who was diagnosed with Parkinson’s and wanted to support research. As a native Portlander, I immediately recognized the name of the Trail Blazers legend who had made the call. It was Brian Grant.
A year later Brian threw one of the biggest, star-studded events in Portland’s history. He gave the proceeds — more than $300,000 — to The Michael J. Fox Foundation to fund research toward a cure.
Shortly after that first event, I moved back to Portland. I reached out to Brian’s foundation to volunteer to help with its annual gala, "Shake It Till We Make It." I was surprised to receive a phone call from Brian who wanted my advice on a new direction for the foundation.
Brian, like many people diagnosed with this incurable disease, was frustrated by the lack of information on how to live with Parkinson’s. He wanted to redirect his foundation to create a community of people impacted by Parkinson’s who could share advice and resources to improve the quality of their lives today.
The problem was, those resources were just starting to come into existence. Though Parkinson’s was first described 200 years ago, the focus of the efforts to help people with the disease had up until recently focused on funding research toward treatments and a cure.
The answer to Brian’s question — what can I do to live with this disease today — wasn’t easy to find in 2011. Fortunately researchers at Oregon Health & Science University and other academic medical centers were starting to figure it out. Championed by pioneers like Intel co-founder Andy Grove, who lived with Parkinson’s until his death in 2016, research was starting to show that exercise could potentially slow down the symptoms of Parkinson’s. In fact, it’s currently the only therapy that has that potential.
But taking the research and it turning into community-based programs, and convincing people of the importance of those programs, was a difficult feat. So the Brian Grant Foundation went through growing pains. Though its events were well known and well attended, the organization struggled to communicate its mission and impact while developing its programs.
Behind the scenes at that time, the Brian Grant Foundation was forming a world-class medical advisory board and a dedicated group of volunteers. Together, they sifted through the evidence on how to manage Parkinson’s symptoms through exercise and nutrition and piloting community programs. Brian’s commitment remained steadfast. The pieces were starting to come together for the foundation.
In 2016 I received another phone call from Brian. The foundation was ready to turn a corner. He asked if I would come on board and take on the role of executive director.
Since that time, we’ve developed guidelines specifically geared toward the management of Parkinson’s symptoms through exercise and diet. Those guidelines form the basis of our programs, which include local cooking classes and wellness retreats. We’ve also brought those programs online.
At www.briangrant.org you’ll find exercise and cooking videos, articles on living with Parkinson’s and expert interviews, recipes, moves of the month and more.
We’re also developing a workforce of allied health and fitness professionals that can put research into practice.
In partnership with OHSU’s Balance Disorders Laboratory, we’ve developed a curriculum to teach professionals about the safest and most effective activities targeted at delaying the mobility problems that are associated with the disease. In addition to our programs in Oregon, this year we’ll host trainings in Orlando, Fla., Miami, Seattle and Chicago.
We’ve also brought the training online, making it freely available to anyone around the globe. As of today nearly 750 people from 16 countries around the world have accessed the training.
The aim of our efforts is to help people with Parkinson’s manage their symptoms, maintain their overall health and prevent other serious illnesses. We hope for a cure. Until then, our goal is to improve the quality of life for people with Parkinson’s and their loved ones.
Most importantly, we’ve created a supportive community to ensure that no person has to face this disease alone. Today when a person hears the words “you have Parkinson’s,” we’re here to give them the tools they need to live their lives to the fullest. We hope you’ll join us.
https://www.bizjournals.com/portland/news/2019/02/06/how-the-brian-grant-foundation-is-expanding.html
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