Team Rowland has hit $1 MILLION in its fundraising efforts to eradicate Parkinson's Disease, and the Michael J. Fox Foundation has recently published their bi-annual research report.
At the PAA, we wanted to provide you with a summarized update of the Michael J. Fox Foundation's bi-annual research report. This includes updates for new levadopa treatments that are close to approval, large-scale investments on advance inflammation therapies, LRRK2 Drug entering next-stage clinical trial, new imaging advances for diagnosing and monitoring PD, and how you can get involved in the PPMI study. All of your fundraising efforts have contributed to this success! But first....
TEAM ROWLAND REACHES MILLION DOLLAR MARK Since we went to press about the results of the 2023 Team Rowland Ride in 2023, they shared their biggest news ever - Six years of fundraising has contributed ONE MILLION DOLLARS to eradicate Parkinson's disease. The Rowland Road Series passed the one-million-dollar mark in combined funding for its two beneficiaries: The Michael J. Fox Foundation for Parkinson's Research and the Parkinson Association of Alabama.
The event is named after Mike Rowland, PAA Board of Directors and Executive Committee Member. 100% of that total will go directly toward finding a cure for Parkinson's, while improving the lives of Parkinson's patients across the state of Alabama. What makes this milestone so unique and so special is the number and variety of people who all come together to make it a reality. From 2 months to 90 years old, strollers to triathletes, riders, crossfitters, and golfers, volunteers and cheering sections, old friends and new from across the country, family from all over the world, and donors and sponsors from $5 to $25k. Every individual's contribution was critical to accomplishing this collective result. Team Rowland is overwhelmed and grateful for the support in the fight with them. And they aren't done yet, so stay tuned for 2023.
Meanwhile, we thought it would be important for you to see where some of this funding is being applied from the efforts and investment being made by the Michael J. Fox Foundation.
NEW LEVODOPA TREATMENT CLOSE TO APPROVAL
An under-the-skin, continuous infusion of levodopa is close to possible approval by the U.S. Food and Drug Administration. Levodopa is the "gold standard" PD medication to treat motor symptoms. Currently, levodopa comes in the form of a pill, a dissolvable tablet, a gel infused into the small intestine, and an inhaler. Infused levodopa may expand options for people with Parkinson's whose symptoms are not well-managed with other formulations. Drug maker AbbVIE submitted the therapy for regulatory review. If approved, it could be available in early to mid-2023.
LARGE-SCALE INVESTMENTS ADVANCE INFLAMMATION THERAPIES
Two therapies that aim to reduce brain inflammation and protect brain cells are taking sizable steps with MJFF funding. Neuropore Therapies received a $4.8 million grant for laboratory development of drug NPT1220-478 and a future human trial. A $6.2 million grant to Longevity Biotech will support the first human study of the drug LBT-3627. Both therapies work against inflammation in Parkinson's. These large investments are allowing the companies to generate critical data that may position them for other partnerships and acceleration toward patient hands.
LRRK2 DRUG ENTERS NEXT-STAGE CLINICAL TRIAL
Denali Therapeutics and Biogen are enrolling participants in their PhaseIIB LUMA study testing an inhibitor to lower activity of the LRRK2 protein and slow disease progression. Parkinson's is linked to higher LRRK2 activity, with and without a mutation in the LRRK2 gene. The LUMA study will enroll at three U.S. sites about 640 people diagnosed with Parkinson's in the past two years who do not have a LRRK2 mutation. A study for mutation carriers will launch later this year. MJFF has invested heavily in studies to profile and measure the LRRK2 pathway, which have allowed these milestones toward a therapy to slow or stop Parkinson's disease.
NEW ADVANCED IMAGING COULD BE USED TO BETTER DIAGNOSE AND MONITOR PARKINSON'S
Researchers from Lund University and Skane University Hospital in Sweden recently shared the first images of alpha-synuclein in the living brain using a PET (positron emission tomography) tracer developed by Swiss biotechnology company AC Immune. The images represent a glimmer of hope after more than a decade of trial and error.
Since it was discovered in the 1990s that the protein alpha-synuclein aggregates in the brains of people with Parkinson's disease, MJFF and its partners have been on a quest to visualize the activity in the living brain. At the same time, drug makers have aggressively pursued alpha-synuclein as a key target for therapies designed to treat PD. Currently, there are 15 trials of potential Parkinson's therapies targeting alpha-synuclein. Researchers understand that without the visualization of alpha-synuclein in the brain, there is no way of monitoring how new therapies and treatments can be effective.
While these clumps are visible through post-mortem tissue analysis, seeing alpha-synuclein in the living brain would enable researchers to confirm diagnosis, identify volunteers for clinical trials, and assess drug efficacy faster. Medical imaging, such as a PET scan, is a non-invasive tool to measure biochemical changes happening in real time.
Other groups are also making headway in the development of alpha-synuclein tracers. The Ken Griffin Alpha-synuclein Imaging Competition concludes this fall, when scientists will have the opportunity to evaluate data from the other awardees, Merck and Mass General Brigham. German biotechnology company MODAG, hope to have data from studies of their alpha-synuclein tracer this year as well.
Alpha-synuclein accumulates in the brain in multiple forms, and these different forms may have an impact on symptoms in Parkinson's and other diseases that involve alpha-synuclein, such as dementia with Lewy bodies. Varying forms of alpha-synuclein may require multiple tracers. More tracers mean better diagnosis for therapies for all.
HOW CAN YOU PLAY A PART IN RESEARCH?
Join the Michael J. Fox Foundation's landmark Parkinson's Progression Markers Initiative (PPMI) to help researchers build a dynamic study to explore and better treat the spectrum of Parkinson's disease.
PPMI has a particular need for people recently diagnosed with Parkinson's who are not yet taking PD medication. (If this is you, please visit michaeljfox.org/newly-diagnosed to learn more and volunteer today). Enrolling people early in their disease allows the study to plot biology and experience from the earliest signs of Parkinson's through its later stages. The initiative is still following hundreds of its first participants, now more than 10 years from their diagnosis. These early volunteers have contributed to new tests and knowledge that may help diagnose disease and predict symptoms such as memory problems.
While PPMI is aiming to connect with people recently diagnosed and with certain risk factors, the study has opened to anyone over age 18 in the United States. Volunteers - with and without PD - can add to the study through its online platform, sharing information on health and disease over time. The more PPMI captures about brain health and aging, the faster science can move to cures.
PAA Director of Programs and Marketing, Brooklyn White, has joined the study and shares insights from her participation, "I decided to enroll in the Michael J. Fox Foundation's PPMI study because I think it is imperative for us to track the potential symptoms or early signs, environmental factors and lifestyle choices that could perhaps lead to a Parkinson's diagnosis. While I have not been officially diagnosed with Parkinson's, I do exhibit some of the early signs and given that both my paternal grandmother and father both had Parkinson's, I feel it is important that they may be able to track potential shared genetics or factors that could contribute to the study if I were to be diagnosed with Parkinson's," says White.
"It's a very simple process. You just go sign-up online and once a quarter you get an email with a link to a survey to complete questions online. It takes about 15 minutes, and helps me to think through what I may be doing in my life that could contribute to a future Parkinson's diagnosis," White claims. "It will especially be important data captured if I do indeed ever get diagnosed with Parkinson's."
PPMI is making progress in its ambitious goals, but many more volunteers are needed. However you have been touched by Parkinson's, you can make a difference. To join the study, go to: www.michaeljfox.org/newly-diagnosed
BETTER CARE FOR YOUR BRAIN
Whether you live with Parkinson's or love someone who does, there are simple steps you can take in everyday life to boost your brain health. From a healthy diet to regular exercise to building positive connections with others, research is piecing together the puzzle of how to best care for your brain, how to prevent disease, and if disease does arise, how to best treat it.
A brand-new resource from the Michael J. Fox Foundation, Better Brain Health: A Guide to Caring for Your Magnificent Brain at Every Age, explores the concept of being at risk for brain disease and offers easy-to-follow steps to support your brain health. This guide is for everyone - younger or older, living with disease or not, and will empower you to take steps today to care for your brain. Download the free guide at www.michaeljfox.org/brainhealth.
DID YOU KNOW?
Did you know that PAA board members are represented well by serving on the Patient Council for the Michael J. Fox Foundation? Ken Cater and Michael S. Fitts are both members who serve diligently - keeping us informed and abreast of everything happening at the Michael J. Fox Foundation.
We are all in this together!
Source: Michael J. Fox Foundation for Parkinson's Research. www.michaeljfox.org. Fall/Winter 2022: The Fox Focus on Parkinson's. Eighth Addition: The Quest to Detect and Measure Parkinson's: A Major Step Forward.