Non-motor symptoms

Non-motor symptoms of Parkinson’s can be just as challenging—sometimes even more so—than the movement symptoms. Caregivers often see the impact of these issues every day, even when they aren’t the focus during medical appointments. It’s important to remember that problems like mood changes, anxiety, sleep issues, or cognitive shifts are very real parts of the disease and deserve attention.

If your loved one’s movement-disorder neurologist hasn’t brought up these concerns, don’t hesitate to raise them yourself. You can also ask the specialist to help connect you with a psychiatrist or mental-health professional who has experience working with people who have Parkinson’s. This kind of support can make a meaningful difference for both the person living with PD and those caring for them.

Kirsten Gillibrand’s and the Older Americans Act

Parkinson news from Kirsten Gillibrand’s New York Minute

Fighting for the Older Americans Act

The Older Americans Act (OAA) is critical to support Americans living with aging-related diseases, like Alzheimer’s and Parkinson’s.

At this week’s Aging Committee hearing, Kirsten heard from witnesses about the importance of OAA-funded programs like nutrition assistance, home care, transportation assistance, and community engagement in helping millions of Americans live with dignity and independence.

She called for the reauthorization of the OAA to continue these vital support programs.

Individual casework is Kirsten’s top priority. If you need help with any federal agency, contact her at gillibrand.senate.gov

Survey - Social Connections and Attitudes About Aging

 You are invited to participate in a research study about social connections and attitudes about aging in people with Parkinson’s disease (PD).  

Your participation is voluntary. If you choose to participate, you will be taken to a website to complete an online survey about social connections and attitudes about aging. The survey is expected to take between 30 and 45 minutes.  Take survey here.

When the Phone Stops Ringing

At first, I didn’t want to tell anyone. When I was diagnosed with Parkinson’s disease, it felt like a private earthquake—my world shifted, but from the outside, everything looked the same. I thought if I just carried on as usual, maybe people wouldn’t notice.

But Parkinson’s has a way of showing itself. The the frozen face, the slow movements, the voice that gets softer without me realizing it—it all adds up. Eventually, people began to ask if I was okay. That’s when I started telling the truth, at least privately to closer friends and family.

I’d try to sound calm, even casual. “Yeah, I’ve got Parkinson’s,” I’d say, “but I’m doing all right.” I didn’t want sympathy or a sad look. I just wanted people to understand.

Most of them reacted kindly. They said things like, “You’re strong.” “You’ll beat this.” “Let me know if you need anything.” And they meant it—at least in that moment. But as time went on, the calls slowed down. The texts got shorter. Invitations stopped coming.

It’s not that I blame them. I know Parkinson’s makes people uncomfortable. It’s unpredictable. It doesn’t have a finish line. There’s no “get well soon” to say, because I won’t. Maybe that’s hard for people to face. Maybe they just don’t know what to do with someone who can’t bounce back.

Still, the silence hurts. I used to have a full social life—friends dropping by, long conversations, spur-of-the-moment dinners, music festivals and blues bars. Now, the phone doesn’t ring much. I scroll through old messages, remembering how easy it all used to be.

Living with Parkinson’s is a strange mix of physical and emotional loss. The slowness and change in gait are visible, but the isolation is quieter. You feel yourself slipping out of the social world little by little, not because you chose to, but because the world doesn’t quite know how to include you anymore.

I tell myself it’s not personal, but it’s hard not to feel forgotten. Parkinson’s already takes so much—steady movement, clear speech, restful sleep. Losing connection with people feels like one loss too many.

If there’s one thing I wish people knew, it’s that I’m still me. I still want to laugh, tell stories, make plans, argue about music or where is the pizza. I just move a little slower getting there.

So if you know someone with Parkinson’s, call them. Even if you don’t know what to say. Especially if you don’t know what to say. You don’t need to fix anything. You just need to show up. Silence may feel polite, but it’s the loneliest sound in the world.

co-author: chatgpt

Medical bill decoded by ChatGPT

Forget 8 minute doc appointments-for around $20 out of pocket, you can get a more detailed appointment. My movement disorder specialist checkup usually involves multiple doctors that are thinking, exchanging ideas, and keeping me in the loop. My input is heard. The appointment can last over an hour, could be 90 minutes sometimes. Maybe I just never noticed it before but code G2211 changes my appointment from a quick hello you look great, see you in six months to an actual doctor exam. Have you seen a billing code of G2211 on any of your bills?

A simple explanation of the medical billing code from ChatGPT:

The code G2211 is used by doctors when they believe your visit involved extra time, effort, or complexity beyond a standard appointment — usually because of your overall health situation or ongoing treatment needs.

Here’s a breakdown in plain language:

"E/Ms" stands for Evaluation and Management services — basically, your regular checkups or doctor visits.

"G2211" is an extra billing code a doctor adds when your care requires more coordination, more thought, or long-term planning, like if you have chronic conditions (like diabetes, heart disease, or Parkinson’s), mental health concerns, or need ongoing monitoring.

It tells insurance (or Medicare) that the doctor did more than just a quick visit — they considered your broader medical picture, possibly reviewed your records, coordinated care, or thought through a complex issue.

Example:

Let’s say you go in for a regular visit, but you also have Parkinson’s disease. The doctor doesn't just look at one symptom — they think about how everything fits together, including other meds you're on, side effects, long-term plans, and so on. That extra thinking and planning is what this code is for.

How much does it usually cost?

It can add about $15–$30 to the total bill, depending on your insurance. Medicare and many private insurers now accept it.

 

The Job No One Sees: Life as a Parkinson’s Caregiver

Trying to explain to someone how much my spouse does for me is not easy. When they ask how my spouse is doing, my jaw tightens, my heart races and I want to disappear. But I calmly and politely say "she's fine."   So I asked ChatGPT to help me out and describe the life a caregiver. 

Life of a Caregiver, described by Chat GPT (AI)

There’s a job out there more demanding than most people can imagine. It’s 24 hours a day, 7 days a week. No salary. No sick days. No weekends off. No benefits package. It comes with high emotional stress, physical exhaustion, and a level of responsibility that never lets up.

It’s called being a caregiver.

Specifically, a caregiver to someone with Parkinson’s disease.

When people think of Parkinson’s, they picture the tremors. The slowness. Maybe they’ve seen someone shuffle or freeze mid-step. But what they don’t see is the person behind the scenes—the one making sure medications are taken on time, adjusting the daily routine around unpredictable symptoms, and doing all the quiet, invisible work that keeps everything from falling apart.

Being a caregiver in this context means you take on 100% of the load. You don’t get to tag out. You don’t get to say, “I’m tired” and walk away. If you’re not there to help them out of bed, make the food, clean up the spills, talk to the doctors, or notice the mood swings—no one else is. You are the system. You are the failsafe.

And it’s not just the physical work. It’s the emotional toll of watching someone you love lose parts of themselves—slowly, unevenly, painfully. Some days they can dress themselves. Some days they can’t. Some days they talk clearly. Other days, it’s a struggle just to hear a full sentence.

You try to stay patient. To smile. To hold it together for them. And you do—because love demands it. But it chips away at you.

And here’s the part that hits hardest: most people don’t notice.

They see the person with Parkinson’s and say, “They’re so brave.” Which is true. But they rarely look at the caregiver and say, “And you’re a damn hero for being there every step of the way.” You’re expected to do it. To not complain. To not burn out.

But caregivers do burn out. They break down quietly—physically, emotionally, mentally. Because there’s no safety net for the one holding the net.

So if you’re reading this as a caregiver: I see you. Your work matters. Your exhaustion is valid. Your role is essential—even if no one claps for it. And if you’re not a caregiver but you know someone who is, please: offer help. Offer rest. Offer acknowledgment.

Because behind every person with Parkinson’s is someone who’s making it possible for them to keep going. And that someone deserves more than silence and survival.  Thank you, with all my heart. And body.j

Finding Relief in an Unexpected Place: My First Visit to a Chiropractor in 8 Years

Yesterday, I did something I hadn’t done in almost a decade — I saw a chiropractor. And I’m glad I did.

For years, I’ve been dealing with the chronic neck and shoulder stiffness that comes with Parkinson’s disease. The discomfort has been a constant companion, and while I’ve tried to manage it through the traditional medical system, progress has been frustratingly slow. Neurologists — the gatekeepers of my care — have always warned me against chiropractic therapy. They insisted it was unscientific, risky, and especially dangerous. Their strong stance talked me out of using a chiropractor for the past eight years. I trusted the doctors. But over time, it became clear that their methods weren’t addressing this particular issue effectively.

Physical therapy was the alternative they recommended. And I tried. I put in the hours, followed the exercises, and showed up for every appointment. But session after session, I found myself feeling worse after the visit and questioning the process. Most physical therapists I encountered didn’t seem to truly understand Parkinson’s or how it uniquely affects the body. The routines felt generic, and often, I left feeling like I’d just wasted both time and money. It was discouraging.

So yesterday, driven by frustration and pain, I visited a chiropractic clinic. The chiropractor listened carefully, examined my posture and range of motion, and performed a targeted adjustment. The result? Immediate — and noticeable — relief. My neck felt looser. The nagging tightness in my shoulder had eased. For the first time in a long time, I felt like someone had treated the root of the problem, not just the symptoms.

It’s early days, and I know this path isn’t for everyone. But I’ve learned not to dismiss a treatment simply because it doesn’t fit within the narrow boundaries of traditional medicine. Chiropractic care may not be the “standard” approach to managing Parkinson’s, but for me, it’s been a welcome and effective addition. I’m feeling hopeful — and a little more comfortable — for the first time in a long time.

I go back next week, stay tuned.

The Connection Between Music and Parkinson’s Disease

The Healing Rhythm: Exploring the Profound Connection Between Music and Parkinson’s Disease

Music is more than entertainment. It’s a form of communication, an emotional outlet, and—according to growing scientific evidence—a powerful therapeutic tool. For individuals living with Parkinson’s disease (PD), music can do something remarkable: it can help the brain reconnect with the body.

As Parkinson’s continues to affect millions worldwide, researchers and therapists are increasingly exploring how music, rhythm, and movement can aid in both symptom management and emotional well-being. The link between the brain and music is proving to be not just profound, but potentially transformative.

Parkinson’s Disease and the Disruption of Rhythm

Parkinson’s is a neurodegenerative disorder marked by the gradual loss of dopamine-producing neurons, primarily in the basal ganglia. This part of the brain plays a critical role in coordinating movement, and its disruption leads to hallmark PD symptoms like tremors, stiffness, slowness of movement (bradykinesia), and gait abnormalities.

Interestingly, the same parts of the brain involved in movement—particularly the motor cortex, basal ganglia, and cerebellum—are also heavily engaged when we listen to or produce music. Rhythm, in particular, has a direct line to these motor centers.

Music as a Bridge: Rhythmic Auditory Stimulation (RAS)

One of the most well-documented therapeutic techniques involving music and Parkinson’s is Rhythmic Auditory Stimulation (RAS). This involves the use of metronome-like beats or musical rhythms to guide and improve walking pace, stride length, and overall coordination.

Studies have shown that patients who walk in time with a rhythmic beat can see notable improvements in their gait and balance—even when the effects of medication are waning. The beat provides a sort of external cue that helps override the brain’s internal motor dysfunction.

In essence, music gives the Parkinson’s brain a shortcut—a rhythm to latch onto that helps it bypass damaged pathways.

More Than Movement: Music’s Emotional and Cognitive Power

While the physical benefits of music therapy are striking, the emotional and psychological effects are equally powerful. Parkinson’s can often lead to depression, anxiety, and social withdrawal. Music therapy, whether through listening, singing, or playing an instrument, offers patients a sense of joy, control, and connection.

Neuroimaging studies show that music activates the brain’s reward system, releasing dopamine—the very neurotransmitter that’s deficient in Parkinson’s patients. Though music can’t replace dopamine, it may help stimulate the brain’s remaining capacity to produce or respond to it.

Furthermore, engaging with music may help protect cognitive function. Music requires attention, memory, timing, and sometimes language—all faculties that are challenged by Parkinson’s. Participatory music programs, like group drumming or choir singing, are increasingly used in PD communities to keep minds sharp and spirits high.

A Symphony of Possibility

The intersection of music and neuroscience is still unfolding, but for Parkinson’s patients, the early results are encouraging. Music therapy isn’t a cure—but it is a meaningful tool that helps patients reclaim parts of their lives that Parkinson’s threatens to steal.

From regaining a steadier step to rekindling emotional expression, music reaches where medicine sometimes cannot. It reminds us that the brain, though impaired, is still beautifully responsive—and that healing can begin with something as simple and profound as a beat.

I'm Still Standing (song)

I heard this Elton John tune covered by Joni Mitchell and heard the words so loud this morning. I thought I'd share it with you.

Joni Mitchell, Annie Lennox, Brandi Carlile and Sista Strings interpret Elton John's classic song "I'm Still Standing" at the 2024 Gershwin Prize for Popular Song concert honoring Elton John and Bernie Taupin at DAR Constitution Hall in Washington, D.C., March 30, 2024.

"I'm Still Standing", with lyrics written by Bernie Taupin, was released as a single on Elton John's 1983 studio album Too Low for Zero.

April is Parkinson's Awareness Month

April is Parkinson's Awareness Month and World Parkinson's Day falls on April 11, 2025. This day commemorates the birthday of Dr. James Parkinson, who first described the condition in 1817.

During Parkinson's Awareness Month, organizations and individuals work to raise awareness about Parkinson's disease, provide support to those living with the condition, and advocate for research and treatment advancements.

Consider making a donation

Several nonprofit organizations dedicated to Parkinson's disease offer vital resources, support, and research funding. Key organizations include the Parkinson's Foundation, American Parkinson Disease Association (APDA), and the Michael J. Fox Foundation for Parkinson's Research. 

Here's a more detailed look at some key organizations:

Parkinson's Foundation:

This organization provides resources, support, and research funding to improve the lives of people with Parkinson's disease. They offer a helpline, webinars, and resources for healthcare professionals, care partners, and people with Parkinson's. 

American Parkinson Disease Association (APDA):

APDA focuses on research, education, and support for people with Parkinson's, their families, and caregivers. They have chapters across the country, providing local support and resources. 

Michael J. Fox Foundation for Parkinson's Research:

The Michael J. Fox Foundation is dedicated to funding research aimed at finding a cure for Parkinson's disease and developing improved therapies. 

Davis Phinney Foundation for Parkinson's:

This foundation focuses on helping people live well with Parkinson's today by providing information, inspiration, and tools. 

Parkinson & Movement Disorder Alliance:

This organization provides opportunities for people with Parkinson's and other movement disorders to learn, live more fully, and connect with others. 

Melvin Weinstein Parkinson's Foundation:

This foundation provides financial assistance to eligible individuals with Parkinson's for medical equipment and home healthcare. 

Parkinson Social Network (PSN):

A volunteer-run organization that offers virtual programs to support and engage those with Parkinson's, their care partners, family, friends, and other community members. 

Northwest Parkinson's Foundation:

A 501(c)3 nonprofit serving people with Parkinson's in the Northwest, focusing on awareness, education, advocacy, and care in Washington, Alaska, Idaho, and Montana. 

Dance for PD:

Dance for PD is an internationally-acclaimed program that offers research-backed dance classes for people with Parkinson’s disease online, in New York City, and through our network of partners and associates in more than 400 other communities in 30 countries.

Dance for PD® wants people with Parkinson’s around the world to enjoy and benefit from specialized live and virtual dance instruction. Our values of accessibility, inclusion, compassion and artistic quality permeate everything we do.

When you join our community of supporters, your gift in any amount helps continued to support thousands of people around the world who want to harness the power of dance and music to maintain dignity and well-being. Learn more and donate.

Jeopardy! Winner with Parkinson's Disease

Jeopardy! Winner with Parkinson's Disease Competes 24 Years After His First Audition: 'My Dream Was Realized'

Competing on Jeopardy! has been a long time coming for Harvey Silikovitz.

“It’s been a longtime dream of mine to get here,” he told host Ken Jennings. “In 2019, I was diagnosed with Parkinson’s, but I continued chasing the dream, and now here I am.”

continue reading on people.com

What’s Happened Since the Launch of the National Parkinson’s Project?

A Closer Look at Progress and Politics

In December 2022, Congress passed a bipartisan bill that established the National Parkinson’s Project—a bold, long-overdue initiative aimed at preventing, diagnosing, treating, and ultimately curing Parkinson’s disease. The legislation, inspired in part by the success of the National Alzheimer’s Project Act (NAPA), was welcomed with hope by the millions of Americans affected by Parkinson’s, as well as their families, caregivers, and advocates.

But more than two years later, one has to ask: what tangible steps have been taken since this landmark legislation passed? And how has the ever-shifting political landscape affected the implementation of this ambitious project?

Promising Words, But Where’s the Action?

The National Parkinson’s Project promised a coordinated, whole-of-government approach, including a federal advisory council to oversee and guide progress. This council was meant to bring together scientists, clinicians, government officials, and patient advocates to create a strategic plan with measurable outcomes.

Yet, as of mid-2025, public details about the execution of this plan remain surprisingly scarce. Has the advisory council been fully established? Have funding streams been secured and allocated appropriately? What measurable research milestones have been met, if any? While isolated advances in Parkinson’s research continue—especially in areas like genetic therapies and deep brain stimulation—there’s little visibility into how or whether these efforts are being unified under the National Parkinson’s Project umbrella.

The Political Pendulum and Its Effects on Science

It’s no secret that changes in political leadership can dramatically impact the direction and speed of public health initiatives. Since the project’s passage, shifts in congressional power and priorities have raised concerns about whether Parkinson’s remains a focus for lawmakers.

In times of divided government, or when fiscal austerity becomes a dominant theme, science and health funding often face cuts or delays. While Parkinson’s advocacy groups continue to lobby for progress, the question remains: is there enough political will to treat Parkinson’s like the national health crisis it truly is? Or has it, like so many health promises before it, been quietly sidelined in favor of more politically expedient issues?

Looking Forward: What Needs to Happen Now?

If the National Parkinson’s Project is to succeed, it requires more than words on paper. It demands transparency, consistent funding, accountability, and an unwavering commitment to cross-agency collaboration. Just as importantly, it needs continued advocacy to keep the pressure on elected officials, regardless of who holds power in Congress or the White House.

Parkinson’s doesn’t pause for politics. Neither should progress.

As concerned citizens, researchers, and families touched by this disease, we must keep asking: what’s next? What are the metrics of success? Who is responsible for ensuring this project fulfills its promise?

Until these questions are answered, the fight continues—not just against Parkinson’s, but against complacency.

---

Public Law 118-66

Statute at Large 138 Stat. 1443 - Public Law No. 118-66 (07/02/2024)

[118th Congress Public Law 66]
[From the U.S. Government Publishing Office]



[[Page 138 STAT. 1443]]

Public Law 118-66
118th Congress

                                 An Act


 
  To direct the Secretary of Health and Human Services to carry out a 
 national project to prevent, diagnose, treat, and cure Parkinson's, to 
      be known as the National Parkinson's Project, and for other 
            purposes. <<NOTE: July 2, 2024 -  [H.R. 2365]>> 

    Be it enacted by the Senate and House of Representatives of the 
United States of America in Congress assembled, <<NOTE: Dr. Emmanuel 
Bilirakis and Honorable Jennifer Wexton National Plan to End Parkinson's 
Act.>> 
SECTION 1. <<NOTE: 42 USC 201 note.>>  SHORT TITLE.

    This Act may be cited as the ``Dr. Emmanuel Bilirakis and Honorable 
Jennifer Wexton National Plan to End Parkinson's Act''.
SEC. 2. NATIONAL PARKINSON'S PROJECT.

    Title III of the Public Health Service Act (42 U.S.C. 241 et seq.) 
is amended by adding at the end:

               ``PART W--PARKINSON'S AND RELATED DISORDERS

``SEC. 399OO. <<NOTE: 42 USC 280n.>>  NATIONAL PARKINSON'S 
                            PROJECT.

    ``(a) Definition of Parkinson's.--In this section, the term 
`Parkinson's' means--
            ``(1) Parkinson's disease; and
            ``(2) all other neurodegenerative Parkinsonisms, including 
        multiple system atrophy, corticobasal degeneration, progressive 
        supranuclear palsy, and Parkinson's-related dementia.

    ``(b) Establishment.--The Secretary shall carry out a national 
project, to be known as the National Parkinson's Project (referred to in 
this section as the `Project'), to prevent, diagnose, treat, and cure 
Parkinson's.
    ``(c) Activities Carried Out Through Project.--In carrying out the 
Project, the Secretary shall--
            ``(1) <<NOTE: Updates. Plan.>>  create, maintain, and 
        periodically update an integrated national plan to prevent, 
        diagnose, treat, and cure Parkinson's, ameliorate symptoms, and 
        slow or stop progression;
            ``(2) carry out the annual assessment under subsection (d);
            ``(3) provide information, including--
                    ``(A) <<NOTE: Estimate.>>  an estimate of the level 
                of current Federal investment in preventing, diagnosing, 
                treating, and curing Parkinson's, ameliorating symptoms, 
                and slowing or stopping progression; and
                    ``(B) if applicable, an estimate of the investment 
                necessary to prevent, diagnose, treat, and cure 
                Parkinson's, ameliorate symptoms, and slow or stop 
                progression;

[[Page 138 STAT. 1444]]

            ``(4) <<NOTE: Coordination.>>  coordinate research and 
        services across all Federal agencies related to Parkinson's;
            ``(5) encourage the development of safe and effective 
        treatments, strategies, and other approaches to prevent, 
        diagnose, treat, and cure Parkinson's, ameliorate symptoms, and 
        slow or stop progression;
            ``(6) improve the--
                    ``(A) early diagnosis of Parkinson's; and
                    ``(B) coordination of the care and treatment of 
                individuals with Parkinson's;
            ``(7) <<NOTE: Review.>>  review the impact of Parkinson's on 
        the physical, mental, and social health of individuals living 
        with Parkinson's and their caregivers and families;
            ``(8) <<NOTE: Coordination.>>  coordinate with international 
        bodies, to the extent possible, to integrate and inform the 
        mission to prevent, diagnose, treat, and cure Parkinson's, 
        ameliorate symptoms, and slow or stop progression globally; and
            ``(9) to the extent practicable, collaborate with other 
        entities to prevent duplication of existing research activities 
        for related disorders.

    ``(d) <<NOTE: Deadline. Recommenda- tions.>>  Annual Assessment.--
Not later than 24 months after the date of enactment of this section, 
and annually thereafter, the Secretary shall carry out an assessment of 
the Nation's progress in preparing for, and responding to, the 
escalating burden of Parkinson's, including--
            ``(1) recommendations for priority actions based on the 
        assessment;
            ``(2) a description of any steps that are planned or have 
        already been taken to implement such recommendations, including 
        whether such recommendations can be implemented under existing 
        law; and
            ``(3) such other items as the Secretary determines 
        appropriate.

    ``(e) Advisory Council.--
            ``(1) <<NOTE: Establishment.>>  In general.--The Secretary 
        shall establish and maintain an Advisory Council on Parkinson's 
        Research, Care, and Services (referred to in this section as the 
        `Advisory Council') to advise the Secretary on Parkinson's-
        related issues.
            ``(2) <<NOTE: Appointments.>>  Membership.--
                    ``(A) Federal members.--The Advisory Council shall 
                be comprised of experts, to be appointed by the 
                Secretary, who collectively are from various backgrounds 
                and perspectives, including at least one member from 
                each of--
                          ``(i) the Centers for Disease Control and 
                      Prevention;
                          ``(ii) the Administration on Community Living;
                          ``(iii) the Centers for Medicare & Medicaid 
                      Services;
                          ``(iv) the National Institutes of Health;
                          ``(v) the Agency for Healthcare Research and 
                      Quality;
                          ``(vi) the Department of Veterans Affairs;
                          ``(vii) the Food and Drug Administration;
                          ``(viii) the National Science Foundation;
                          ``(ix) the Department of Defense;
                          ``(x) the Environmental Protection Agency;
                          ``(xi) the Office of Minority Health;
                          ``(xii) the Indian Health Service;

[[Page 138 STAT. 1445]]

                          ``(xiii) the Office of the Surgeon General of 
                      the Public Health Service; and
                          ``(xiv) other relevant Federal departments and 
                      agencies as determined by the Secretary.
                    ``(B) Non-federal members.--In addition to the 
                members listed in subparagraph (A), the Advisory Council 
                shall include 10 expert members, to be appointed by the 
                Secretary, who shall include representatives of minority 
                communities, communities disproportionately affected by 
                Parkinson's, and communities underrepresented in 
                Parkinson's research, who shall each be from outside the 
                Federal Government, and who shall include--
                          ``(i) 2 Parkinson's patient advocates, at 
                      least 1 of whom is living with young-onset 
                      Parkinson's;
                          ``(ii) 1 Parkinson's family caregiver;
                          ``(iii) 1 health care provider;
                          ``(iv) 2 biomedical researchers with 
                      Parkinson's-related expertise in basic, 
                      translational, clinical, or drug development 
                      science;
                          ``(v) 1 movement disorder specialist who 
                      treats Parkinson's patients;
                          ``(vi) 1 dementia specialist who treats 
                      Parkinson's patients; and
                          ``(vii) 2 representatives from nonprofit 
                      organizations that have demonstrated experience in 
                      Parkinson's-related research or Parkinson's-
                      related patient care and other services.
                    ``(C) Representation.--The Secretary shall ensure 
                that the members of the Advisory Council are 
                collectively representative of agencies, professions, 
                individuals, and entities concerned with, or affected 
                by, activities under this section.
            ``(3) Meetings.--
                    ``(A) Frequency.--The Advisory Council shall meet--
                          ``(i) <<NOTE: Time periods. Effective date.>>  
                      at least once each quarter during the 2-year 
                      period beginning on the date on which the Advisory 
                      Council is established; and
                          ``(ii) at the Secretary's discretion after 
                      such period.
                    ``(B) <<NOTE: Deadline.>>  Annual research 
                meeting.--Not later than 24 months after the date of 
                enactment of this section, and every year thereafter, 
                the Advisory Council shall convene a meeting of Federal 
                and non-Federal organizations to discuss Parkinson's 
                research.
                    ``(C) <<NOTE: Public information.>>  Open 
                meetings.--The meetings under subparagraphs (A) and (B) 
                shall be open to the public.
            ``(4) Annual report.--Not later than 18 months after the 
        date of enactment of this section, and every year thereafter, 
        the Advisory Council shall provide to the Secretary and Congress 
        a report containing--
                    ``(A) <<NOTE: List.>>  a list of all federally-
                funded efforts in Parkinson's research, prevention, 
                diagnosis, treatment, clinical care, and institutional-, 
                home-, and community-based programs and the outcomes of 
                such efforts;
                    ``(B) <<NOTE: Recommenda- tions.>>  recommendations 
                for priority actions to expand, eliminate, coordinate, 
                refocus, streamline, or condense Federal programs based 
                on each program's performance, mission, scope, and 
                purpose;

[[Page 138 STAT. 1446]]

                    ``(C) <<NOTE: Recommenda- tions.>>  recommendations 
                to--
                          ``(i) reduce the financial impact of 
                      Parkinson's on families living with Parkinson's;
                          ``(ii) improve health outcomes for, and the 
                      quality of life of, individuals living with 
                      Parkinson's;
                          ``(iii) prevent Parkinson's, ameliorate 
                      symptoms, and slow or stop progression;
                          ``(iv) improve the quality of care provided to 
                      beneficiaries with Parkinson's who receive 
                      coverage through a federally-funded health care 
                      program, such as the Medicare program under title 
                      XVIII of the Social Security Act or the Medicaid 
                      program under title XIX of such Act;
                          ``(v) research the association between 
                      environmental triggers and Parkinson's to help 
                      reduce exposure to potential triggers; and
                          ``(vi) research and better understand the 
                      underlying factors contributing to Parkinson's;
                    ``(D) priority actions to improve all federally-
                funded efforts in Parkinson's research, prevention, 
                diagnosis, treatment, clinical care, and institutional-, 
                home-, and community-based programs;
                    ``(E) <<NOTE: Evaluation.>>  an evaluation of the 
                implementation, including outcomes, of the national plan 
                under subsection (c)(1); and
                    ``(F) implementation steps to address the 
                recommendations and priority actions under subparagraphs 
                (B), (C), and (D), based in part on the evaluation under 
                subparagraph (E).
            ``(5) Termination.--The Advisory Council shall terminate at 
        the end of calendar year 2035.

    ``(f) Information Sharing.--Each Federal department and agency that 
has information relating to Parkinson's shall share such information 
with the Secretary consistent with the statutory obligations of such 
department or agency regarding disclosure of information, as necessary 
to enable the Secretary to complete a report under subsection (e)(4).
    ``(g) Sunset.--The section shall cease to be effective at the end of 
calendar year 2035.''.

    Approved July 2, 2024.

LEGISLATIVE HISTORY--H.R. 2365:
---------------------------------------------------------------------------

HOUSE REPORTS: No. 118-313 (Comm. on Energy and Commerce).
CONGRESSIONAL RECORD:
                                                        Vol. 169 (2023):
                                    Dec. 13, 14, considered and passed 
                                        House.
                                                        Vol. 170 (2024):
                                    May 23, considered and passed 
                                        Senate.

                                  <all>