Mom to three boys and Fractional CFO; Dad & grandfather had Parkinson's disease and I carry LRRK2 G2019S variant.

Joined February 2015
At the recent @BiochemSoc LRRK2 Meeting in Dundee, advocate Jessi Keavney @JessKeav got a standing ovation from the audience for her amazing presentation on the human experience of LRRK2-associated #Parkinsons - very powerful stuff!
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In this episode of the Podcast, we sit down with Jessi Keavney, a Parkinson's advocate & member of the National Council. Jessie shares her perspective on the landscape of policy advocacy, & the critical importance of community engagement in driving legislative change. @jesskeav
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We’re celebrating a major milestone for the Parkinson’s community! The National Parkinson’s Plan Advisory Council is officially appointed and ready to begin its work. The Advisory Council includes @MichaelOkun, National Medical Advisor to the Parkinson’s Foundation. This was made possible by years of community advocacy. Now is the time to keep moving the National Parkinson’s Project forward, prioritize research and care investments, and set firm deadlines ➡️ Parkinson’s can’t wait. Stay engaged: Parkinson.org/about-us/news/… #Act4PD #EndParkinsons
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I’m incredibly honored to share that I’ve been appointed by HHS Secretary Kennedy to a two-year term on the newly formed Federal Advisory Council on Parkinson’s Research, Care, and Services. As a member of the Council, I look forward to working alongside people living with Parkinson’s, researchers, clinicians, advocates, and federal agency leaders to help inform implementation of the National Plan to End Parkinson’s Act. Parkinson’s disease has been part of my family’s story for generations. In 2013, I learned that I am a carrier of the LRRK2 G2019S genetic variant, which significantly increases my lifetime risk of Parkinson’s disease (PD). Since then, I have participated in over 40 biomarker and observational research studies over the past twelve years. Importantly, I was a caregiver to both my dad and my uncle, who lived with parkinsonism and dementia. Those experiences gave me firsthand insight into the symptoms that affect quality of life, the realities of caregiving, and the broader financial and emotional impact of this progressive neurodegenerative disease. Living at the intersection of caregiving, genetic risk, and research participation has shaped my perspective and strengthened my commitment to helping move the field forward. Serving on the Advisory Council is an opportunity to help bring the voices of families, caregivers, and people at-risk into national conversations to improve Parkinson’s care today while accelerating research toward prevention and disease-modifying therapies. I’m deeply grateful for the opportunity to serve and thankful to the many people in the Parkinson’s community whose work and advocacy continue to push progress forward every day. The future of Parkinson’s research and care depends on all of us working together. Link2LRRK2.com #Parkinsons #AtRisk #CarePartners #LRRK2 #PDResearch #EndPD
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I had the honor of meeting and talking to Dr. Tim Greenamyre at the Grand Challenges in Parkinson’s Disease conference at the Van Andel Institute. What an amazing movement disorders specialist and researcher. I’m particularly inspired by his optimism regarding LRRK2 inhibitors for PD. Through his work, he was able to connect the significance of high LRRK2 activity to sporadic Parkinson’s and show that even those without the genetic variant could benefit from therapies that reduce LRRK2 activity. That is huge! And, while it is so incredibly unfortunate that he was diagnosed with Parkinson’s himself, he has a unique perspective that is very rare among other scientists studying the disease.
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Having a great time at the Rallying to the Challenge meeting in Grand Rapids at the @VAInstitute with @CureParkinsonsT @HelenMatthewsQ @elabibkiyarash @plantsbloke @CPathInstitute @LHSanders14
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“An ounce of prevention is worth a pound of cure” New review from @GraceCrottyMD & ⁦⁦@MGHNeurology ⁩colleagues explores the designing of clinical trials for #Parkinsons prevention - treating people before they are diagnosed content.iospress.com/article…
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2024 Race Trac Run for Research benefiting Michael J. Fox Foundation for Parkinson’s Research 🧠🧦🦊🧡🏃‍♀️‍➡️
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It is really refreshing to participate in a research study at the NIH clinical center and actually receive individual test results back. I’ve taken the UPSIT test many, many times before and never knew my score. But, I suspected I might have an issue after I had COVID-19. It took months for my smell to return and even now, some smells are totally different than before. Over three years later, and I know my sense of smell is not as strong as it used to be. My score is 31/40. As a 47 year old female, that is approx. 10th percentile or less. The result says “mildly impaired” but I think that is probably not taking into account my age. One more piece of info to add to my chart…
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Jessi Keavney retweeted
How can we care for those at-risk without sidelining those already affected by #neurodegenerative illness? (Amid a worsening physician shortage). What role may #AI and #telemedicine play in making sure that ALL patients are accommodated by the #healthcare system? #MedEd #MedTwitter #NeuroTwitter #Neurology #PatientCare #PatientExperience #HealthcareAccess statnews.com/2024/08/26/alzh…
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Jessi Keavney retweeted
If you knew you were at risk for #Parkinsons or #Alzheimers - but had no symptoms - would you see a doctor? A neurologist? My latest @STATnews piece explores the rise in demand for preventive neurology and the big ethical and practical questions it raises. Catch the full story here: statnews.com/2024/08/26/alzh… #Neurology #Neuroscience #AI #Healthcare #HealthcareInnovation #PreventiveCare #MedTwitter #NeuroTwitter #NeurologicalDisorders #HealthAndWellness #DigitalHealth #Doctors #Medicine #PatientCare #HealthcareAccess
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Overview ⋮ Who is at Risk for Parkinson Disease? ⋮ Blackthorn Events events.blackthorn.io/en/2EmH…
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Thank you @MarkRCookson1 for taking the time to show Carson and I the Laboratory of Neurogenetics at the National Institute of Aging. This is THE DNA sequencing machine that discovered the LRRK2 G2019S variant in 2004 with Dr. Andy Singleton.
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Carson and I are at the ATL airport headed to Bethesda, MD to participate in our first Parkinson’s research study on the National Institute of Health’s research hospital campus. Among all the usual tests, we will also have a skin biopsy to look for phosphorylated alpha-synuclein.
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Miraculously, without antibiotics or vasopressors since Sat (when we decided to place him in hospice care due to poor prognosis), my uncle appears to have made a recovery from septic shock on his own. His blood pressure is back to normal, and he is eating soft foods and drinking again. He is alert and watching TV and talking to me. It appears he may be discharged back to the personal care home tomorrow. While he still has many challenges (weakness, stiffness, tremors, incontinence, cognitive impairment) and may still have significant organ damage, I’m cautiously optimistic his body successfully fought the sepsis infection. This makes me wonder if our common LRRK2 G2019S genetic variant truly gives us superpowers. All four of his blood culture bottles grew gram-negative bacteria that included both klebsiella pneumoniae and proteus mirabilis. He had a fever, his lactic acid was 3.8, INR of 1.96, white blood cell count of 23,500, high neutrophil count, creatinine of 2.66, and his BP stayed in the 60s/30s in the ER even after fluids. His recovery from septic shock at 78 years old is amazing, given he only had treatment in the ER for one day. LRRK2 protein is highly expressed in immune cells. Genetic variants such as G2019S create a hyper response to infection. While that can be protective in some situations, the hypothesis is that chronic inflammation damages certain vulnerable brain cells (hence causing Parkinson’s in some people). pubs.acs.org/doi/10.1021/acs… From the paper: “It will be interesting to define if increased susceptibility of the LRRK2 KO mice to Salmonella and Listeria infection translates into protection by LRRK2 gain-of-function mutations such as the G2019S mutation. Since some of the pathogenic mutations in LRRK2 are very prevalent in human populations, it is tempting to speculate that gain of function mutations in LRRK2 are protective against certain types of infection in specific human populations and might therefore have constituted an evolutionary advantage.”
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Got my MRI results today (check out my brain & spine!). My brain looks great, but it looks like we found the source of the worsening numbness and tingling in my legs. I’ve got a large 8 mm herniated disc in my L4/L5 spine. No wonder the neurologist wasn’t successful in obtaining a CSF sample with a lumbar puncture last November. Carson and I are headed to Bethesda, MD for a NIH research study in August. Looks like a lumbar puncture isn’t possible, but I can still participate in the other testing. I’m getting referred to a neurosurgeon for a consultation. Not sure if surgery would be recommended yet…might start with other conservative measures first. I’ve also got some mild degenerative changes in my cervical spine, but my lumbar spine is concerning because of my neuropathy symptoms.
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This is interesting…”The results revealed that LRRK2 is involved in the pathogenesis of intervertebral disc degeneration (IDD), while knockdown of LRRK2 inhibits oxidative stress-induced apoptosis through mitophagy. Thus, inhibition of LRRK2 may be a promising therapeutic strategy for IDD.” oarsijournal.com/article/S10…
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