Spark the Night is a global initiative dedicated to raising awareness of Parkinson’s disease. It involves illuminating landmarks, buildings, and iconic landmarks with blue lights on World Parkinson’s Day, April 11, to symbolize unity, support, and visibility for the Parkinson’s community.
Spark Art Contest
Explore your creativity with the PD Avengers “SparkArt” Contest. Share your unique perspective on Parkinson’s and join PD Avengers in raising awareness. Your art could spark meaningful conversations and make a real impact. Show your support for Parkinson’s wellness, advocacy, and research. Click here for a gallery of SparkArt and to learn how to submit your own art before March 31.
Sleep Survey
Our February Wellness Webcast: How to Get the Best Night’s Sleep with PD, was one of our largest attending webcasts. PD Avengers takes the conversation deeper and recently launched a Sleep Survey, surveying the “Late Evening Effects of Parkinson’s.”
People with Parkinson’s disease and their care partners are encouraged to share their input and experiences around sleep and symptoms that may be more pronounced during the night. Click here to visit their Sleep Survey website and access the survey.
Our Spring Newsletter is Out and Available for Download Below
Our Spring newsletter is now out and available for download in English and Spanish below. In this issue you’ll read stories from Brian and others in our community, tips on sleeping with Parkinson’s, and more.
Want the newsletter mailed to your home or business?
If you would like to receive a copy mailed straight to your mailbox, join our mail list. The BGF newsletter is produce twice a year, in the Spring and Fall. send your send us your mailing address to info at Brian grant adore.
Learn about the role of nutrition in maintaining health, common challenges to healthy eating, and meal prep tips for people with Parkinson’s. Webcast presenter Jelena Etemovic, a registered dietitian and nutritionist, will also offer her perspective as a care partner for her father with Parkinson’s.
Brian Grant Foundation Celebrates Community for Parkinson’s Awareness Month in April.
Month-long campaign culminates in the organization’s 13th annual gala on April 25, 2024, featuring Blazers legend Brian Grant and other members of the Parkinson’s community.
Portland, Ore. (March 7, 2024) – April is Parkinson’s Awareness Month, and the Brian Grant Foundation (BGF) is celebrating the Parkinson’s community with a month of special programs and events, including its 13th annual “Shake It ‘Til We Make It” gala on April 25, 2024 at 6pm at Castaway Portland. The gala, presented by Dick’s Auto Group, Jamba Juice, Moda Health, and Pivot Group will bring together 250 guests to raise essential support for BGF’s programs to empower people impacted by Parkinson’s disease to lead active and fulfilling lives.
“Building a community of people who support one another to live what’s possible today is the foundation of our programs to improve the quality of life of people with Parkinson’s,” says Katrina Kahl, executive director of the Brian Grant Foundation. “We’re excited to come together to raise awareness of Parkinson’s throughout the month of April.”
“Shake It ‘Til We Make It” launched in 2010, two years after former Blazer Brian Grant was diagnosed with young onset Parkinson’s disease. The event includes a four-course dinner, live and silent auctions, and a program celebrating the people and organizations that have made BGF’s achievements possible. In addition to the event’s presenting sponsors, gold sponsors include AbbVie, CWC Advisors, Jordan Brand, ‘Ohana Ventures, NBA Cares, Pearl Catering, Portland Trail Blazers, and Sapphire Health Services. Tickets are available at briangrant.org/gala.
In April, BGF will also launch the fifth season of its podcast, “On Time: A Parkinson’s Podcast” with seasoned radio host Larry Gifford, who is living with Parkinson’s disease. Larry and his guests will discuss how stigma affects people with Parkinson’s, to help overcome the social isolation that many people with the disease encounter.
BGF will also be the recipient of the 50/50 raffle at the Blazers game on April 11, 2024, which is World Parkinson’s Day. Anyone attending the game that night against the Golden State Warriors can purchase raffle tickets and support our programs for people with Parkinson’s.
For more information about BGF’s programs and events in April, visit our events page.
Celebrating My 52nd Birthday with my Community!
Today, March 5, 2024, I am celebrating my 52nd birthday. Like many people, celebrating my birthday is a chance to reflect on where I’ve been and where I’m going. Through all the highs and lows, I’ve always had friends and family to support me. When I was diagnosed with Parkinson’s, I also had a chance to make new friends in the Parkinson’s community. I’ve said it before but it’s worth repeating – meeting other people with Parkinson’s and making new connections in our community was the best thing I did when I was diagnosed.
Community is so important to living well with Parkinson’s that we’ve made it the foundation of our programs at BGF. Whether you’re part of our online community or one of the folks who comes out for our events in Portland, you’re important to us. You’re helping us build a community that supports one another to do what’s possible today.
If you haven’t had a chance to connect with your community lately, I encourage you to do so. You never know who you might meet – like when I met my Portland to Coast teammate Todd Vogt (in the picture standing at the very end on the left) who is a champion rower on his way to the Paralympics in Paris this summer! I’m proud of Todd, who is living with young onset Parkinson’s disease, for continuing to find ways to do the things he loves. Parkinson’s doesn’t define us and we’re stronger together.
Keep living well,
Brought to you by Amneal, StrivePD, and Providence Brain and Spine Institute
People with Parkinson’s disease often experience sleep-related issues that can significantly impact their quality of life. Dr. Michelle Dagostine, a Movement Disorders Specialist at Hartford HealthCare, will discusses sleep science and sleep issues commonly associated with PD.
Our Program Advisory Council member, Cathie Baker, lives with Parkinson’s and knows well how important exercise is to help improve symptoms of the disease. She was tapped to share her experience in a recent AARP Health article, about what Parkinson’s disease is and how treatments and exercise can improve symptoms for people with PD.
We are proud to announce our new host for On Time: A Parkinson’s Podcast, Larry Gifford!
Larry is a rock star in the Parkinson’s community, tirelessly advocating for PwP in person and online, co-founding PD Avengers, which BGF is honored to be one of “The Original PD Avengers!”
As a seasoned leader in broadcasting and host of his own podcast, When Life Gives You Parkinson’s, he is a great fit for the job. This year, On Time: A Parkinson’s Podcast is in its fifth season launching April 1, 2024, Larry will lead conversations on a topic he champions: the stigma around Parkinson’s.
More About Larry Gifford
At the age of 45, Larry Gifford received the diagnosis of Parkinson’s in 2017. Since then, he has emerged as an ardent advocate and activist for the cause. Co-founding the Global Alliance to End Parkinson’s, also recognized as PD Avengers, Larry has committed himself to raising awareness and striving for a world free of Parkinson’s. In October 2023, he underwent a significant DBS surgery, marking a pivotal moment in his journey.
Larry’s impact extends to various fronts—he serves as a cohost of the When Life Gives You Parkinson’s Podcast, is a member of the Michael J. Fox Foundation, and holds a position on the editorial board for the Journal of Parkinson’s Disease. Through these roles, Larry plays a vital part in advancing knowledge and understanding within the Parkinson’s community. His dedication to research is evident through his contributions, including co-authoring three published papers that offer valuable insights. Transitioning from a distinguished 30-year career in radio, Larry currently calls Vancouver, B.C., Canada, home. Alongside his wife and partner-in-Parkinson’s, Rebecca, and their son Henry, Larry continues to make impactful strides in the Parkinson’s advocacy space.
Track Your Symptoms with StrivePD
In our January Wellness Webcast: PD 101, Dr. Joseph Quinn, Director from the OHSU Parkinson Center and Movement Disorders Program provided an overview of Parkinson’s and its symptoms. Educating yourself with webcasts like this and having conversations with providers are important in understanding the impacts of Parkinson’s and available treatment options. Tracking factors like medications, exercise, and nutrition and how these things interact with your symptoms is also key to managing your care and can provide you with vital information to share with your care team.
StrivePD is a free iOS disease management application — FDA-cleared on the Apple Watch — that passively collects daily resting tremor and dyskinesia data via Apple’s Movement Disorder API. StrivePD allows you to get a better understanding of what factors influence your symptoms such as medications, diet and exercise. Through the app you can:
Automatically record your symptoms via the Apple Watch.
Explore interactive charts to track your symptoms over time and understand how medications and physical activity impact you.
Share data with your care team (including your Rock Steady Boxing coach and physical therapist) to improve your communication and treatment strategy.
People who have used StrivePD report that it’s easy to use to log and track symptoms. StrivePD summarizes different data sources for people with PD that can be easily shared with their care teams. This data includes:
Passively collected Apple Watch data (sleep, mobility, fall detection, gait, and tremor and dyskinesia).
Self-reported data (medication schedule and self-reported symptoms from StrivePD app).
Clinical data (your disease history and medications).
The benefits you’ll receive from downloading the StrivePD app include:
Insights into your symptoms to help guide conversations with your providers:
With StrivePD, you can receive real-time objective feedback of your tremor and dyskinesia, recorded by the Apple Watch. Similar to how a closed-loop continuous glucose monitor captures data for people with Diabetes, StrivePD transforms Parkinson’s disease management. The data collected by Apple Watch can help you have better conversations with your doctor to develop more personalized care strategies. You can also explore the interactive charts to track your symptoms over time and understand how medications and physical activity impact you.
Activity logging to keep you motivated:
StrivePD also has features to log your physical activity. You can even keep track of your weekly Rock Steady Boxing classes! By tracking your physical activity and symptoms, you can better understand the impact of daily exercise on your well-being and disease progression. This is a great way to help you stay motivated to exercise!
Education about Parkinson’s:
StrivePD also helps you learn more about Parkinson’s disease and the different ways it can affect your body. It explains motor symptoms such as tremors, slowed movement, stiffness (feeling tight or rigid), and balance issues. By understanding these symptoms, you can have a better idea of what you’re experiencing and how to define it.
Hear what users are saying:
One user said, “I’ve been using StrivePD for about six months, and what I love about StrivePD is I can use the app to help track my symptoms, physical activity, and medications. It is amazing that all my data is just passively collected. All I need to do is make sure I have my Apple Watch on my wrist and I’m good to go… Like most patients, having PD terrifies me. But if there is some way we can slow down progression, or maybe even reverse some of the movement problems, that’s a huge win in my book. Both Rock Steady Boxing and StrivePD are empowering me to manage PD.”
Another user said: “While Parkinson’s remains a struggle, StrivePD has helped me realize the importance of exercise and how it dramatically reduces my mobility issues. It motivates me to stretch, lift weights, complete core workouts and visit my physical therapist twice a week. Exercise has dramatically reduced my symptoms and helps me control them.”
