Kate

Thank you Representative @Ilhan for your support!

Parkinson’s is not a $50 billion problem, it is an $82 billion crisis. Economic burden means the total cost of a disease including medical care, lost work, caregiving and everyday life expenses. A new report led by the The Michael J. Fox Foundation in partnership w/ APDA and Parkinson's Foundation shows just how dramatically we have underestimated the true cost of Parkinson’s and related disorders in the United States. Key Points: - The total economic burden of Parkinson’s disease and atypical parkinsonism in 2024 is estimated at over $82 billion annually, far exceeding prior estimates near $50 billion. - Costs extended far beyond medical care and included indirect costs like lost income and productivity as well as non-medical costs such as home modifications, transportation and caregiving. - Care partners contribute substantially to the economic burden, with billions of dollars in lost wages and productivity tied to caregiving responsibilities. My take: This is a wakeup call. Parkinson’s is not just a neurological condition, it is an economic and societal challenge affecting families, communities and health systems. We have been undercounting the true impact for years. When we include care partners, lost productivity and real world expenses, the numbers tell a much bigger story. Here are 5 points that resonated w/ me: 1- Parkinson’s is a whole family disease and the costs extend far beyond the individual living w/ the diagnosis. 2- Non-medical costs such as transportation, housing and daily support are major drivers and have been underestimated. 3- Care partners are carrying a hidden economic burden that must be recognized and supported. 4- Government programs shoulder a large portion of the cost, highlighting the need for policy level solutions. 5- If we do not act on prevention, access and better treatments, these costs will continue to rise rapidly over the next decades. michaeljfox.org/publication/ne… @MichaelJFoxOrg @APDAParkinsons @ParkinsonDotOrg

I am a constituent in Minnesota’s 5th district and I encourage Rep @IlhanMN to cosponsor HR 6130 Alzheimer’s Screening and Prevention Act (ASAP ACT) which has bipartisan support to expand Medicare coverage of blood-based dementia screening tests @ALZIMPACT congress.gov/bill/119th-con…

“We need ASAP A.S.A.P.” @RobertEgge in his closing remarks urges the passage of the bipartisan #ASAPAct so Medicare can cover routine Alzheimer’s blood tests. Add your voice today: bit.ly/442ieIq.

Hello #NeuroTwitter 👋 A reminder that the first MDS Young Members Town Hall will take place on March 27 | 9 AM EST! An incredible chance for trainees to connect and get involved with the @movedisorder See you there! Register: us06web.zoom.us/meeting/regist… @AANmember @TheNewANA1

Tomorrow, more than 300 Parkinson's advocates will join us in Washington D.C. for the Parkinson's Policy Forum! Advocates are traveling from all 50 states to meet with their members of Congress, share their stories and talk about why we need our government to prioritize brain health research for the millions of Americans living with diseases like Parkinson's. To our advocates at home, you can get involved by contacting your members of Congress from wherever you are. Visit PDPolicyForum.org for an email template and directions to get connected to your representatives. Make sure to follow along this week to follow the action! #PDPolicyForum Here is a look back at our event last year!

Thrilled to be back on Capitol Hill for the Parkinson’s Policy Forum! Honored to serve as the Minnesota State Lead We urge Congress to co-sponsor the HEALTHY BRAINS Act and fund $600 million for NIH research on Parkinson’s, Lewy body dementia, and atypical Parkinsonian disorders

Spent the day at the MN Capitol with @alzMNND and fellow advocates supporting the legislative proposal SF1998/HF1269 to ensure equitable access to FDA-approved dementia treatment in Minnesota. Thank you, Senator @ZaynabMMohamed for your time and support! #MN63 #endalz

Lewy body dementia rarely follows a clear path. In this guest blog, @DrSamMoxon shares why uncertainty is often the hardest part for families. Our last and important blog for our LBD focus week. dementiaresearcher.nihr.ac.uk/blog-never-tru…

Join me tomorrow for the National Academy of Neuropsychology’s January Live Webinar on Parkinson’s disease and dementia with Lewy bodies. 1.5 CE credits @NANneuropsych ✨🧠✨ Register here pathlms.com/nan/courses/11…

By 2050, Alzheimer’s & dementia could cost the U.S. nearly $1 trillion. Investing in research today means better outcomes in the future. Add your voice to the bipartisan call to increase research funding at the NIH by an additional $113.485 million. bit.ly/42VytGH

The ILLUMERA Study is a clinical research study testing an investigational medication designed to help reduce hallucinations and delusions in people with #Lewybodydementia, including both DLB and PDD. Learn more about the study today: ow.ly/cH9T50XTM1x

Congress passed the National Plan to End Parkinson’s with overwhelming bipartisan support in 2024—but since then, progress has stalled. The National Parkinson’s Project Advisory Council has still not been seated, and the project is already behind on its first statutory deadline. Today, the Parkinson’s Foundation and our partner organizations called on Secretary Kennedy to end the delays and seat the Advisory Council. You can take action too: Call the Capitol Switchboard at 202-224-3121 to be connected directly to your member of Congress and ask them to press the Dept. of Health and Human Services to immediately seat the National Parkinson's Project Advisory Council. #WhereIsThePDPlan

The @MayoClinic is hosting a professional education event in collaboration with @LBDAssoc focused on Lewy Body Dementia (1.5 CME). It will take place 11:30-1:30 on Fritz Lewy’s birthday (January 28th) in Rochester MN. A live, virtual option is available! share.google/GJ0eyTDmSJyvZp…

At this very moment, you or someone you know is living with #Lewybodydementia. Monthly giving sustains crucial support services for families, providing access to trusted guidance and meaningful connections in safe spaces all year long. Become a supporter: ow.ly/6UsU50XMOhi

Still deciding on a New Year’s resolution? You can join the fight to #ENDALZ as an advocate. By sharing your story, you can help those impacted by dementia get the quality care and support they need. alz.org/advocacy

Neuropsychology Trainees & Neuropsychologists! Join me in January for the National Academy of Neuropsychology @NANneuropsych Live Webinar focused on Parkinson’s disease and dementia with Lewy bodies. Register here : pathlms.com/nan/courses/11…

While Congress negotiates the final FY26 budget bill, ask your representatives to back the bipartisan call to increase Alzheimer’s and dementia research funding and to fund the BOLD program adequately. bit.ly/42VytGH

We hope Rep. @Ilhan MN-05 will co-sponsor the ASAP Act to speed access to screening tests and the AADAPT Act to ensure primary care providers have the training they need to diagnose and treat this disease. alzimpact.org/federal #ENDALZ #ASAPAct 💜#AADAPTAct @alzMNND

Thank you to the staff of Rep. @Ilhan MN-05 for meeting to discuss legislation supporting people & communities impacted by Alzheimer’s & related dementias. We thank her for supporting previous dementia legislation & encourage her to co-sponsor #ASAPAct #AADAPTAct #ENDALZ @alzMNND