THE PROJECT FOCUS
How might we bring greater understanding to neurodegenerative care through connection and personalization?
HOW WE GOT THERE
Over 23 weeks, we mapped pain points and began identifying opportunities that provide value for patients, caregivers, clinicians, and payers. We started untangling this ecosystem by asking ourselves: how might we connect, personalize, and bring greater understanding to neurodegenerative care?



Qualitative Interviews
Analogous Research
Immersive Experiences
We spoke with 90 stakeholders: 21 people with ND conditions, 17 caregivers, 17 clinicians, 6 payers, and 16 industry experts. I partnered with our Visual Designer to create 25+ concepts to test aspects of care coordination, collaborative decision making, and gamified tracking to understand the needs and perspectives of each stakeholder more deeply.
I launched an Analogous “Playlist” with content and events to inspire our team. We joined an 80’s-themed Parkinson’s Choir, listened to podcasts about Aspen trees, and even booked a “Goat to Meeting” farm tour. These experiences expanded our thinking around identity, community, and coordinated care in the midst of a progressive condition.
Working with our Researcher and Medical Director, I designed an Immersion Kit. We combined different household items, like electric toothbrushes, resistance bands, and furniture pads to simulate different motor symptoms that these populations might experience. This helped us capture symptoms that are hard to describe and inspired new accessibility perspectives.

Qualitative Interviews
We spoke with 90 stakeholders: 21 people with ND conditions, 17 caregivers, 17 clinicians, 6 payers, and 16 industry experts. I partnered with our Visual Designer to create 25+ concepts to test aspects of care coordination, collaborative decision making, and gamified tracking to understand the needs and perspectives of each stakeholder more deeply.

Analogous Research
I launched an Analogous “Playlist” with content and events to inspire our team. We joined an 80’s-themed Parkinson’s Choir, listened to podcasts about Aspen trees, and even booked a “Goat to Meeting” farm tour. These experiences expanded our thinking around identity, community, and coordinated care in the midst of a progressive condition.

Immersive Experiences
Working with our Researcher and Medical Director, I designed an Immersion Kit. We combined different household items, like electric toothbrushes, resistance bands, and furniture pads to simulate different motor symptoms that these populations might experience. This helped us capture symptoms that are hard to describe and inspired new accessibility perspectives.
What we Learned
People with neurodegenerative conditions lose trust in their bodies long before a diagnosis.
Patients
Clinicians
After the overwhelming maze of specialists struggling to pattern-match symptoms, people rarely receive the sensitivity needed during diagnoses to set the right tone for their relationship with this condition.
“My neurologist said “Oh, you’re way beyond my expertise. I can’t help you. You need to go to a mobility disorder specialist.” Then when I got to see him after the MRI of my brain and 82 other tests, he says to me, “Well, you should be really glad you have Parkinson’s.” We looked at him and said, “Really, it’s progressive, there’s no cure, and we should be happy?!” And he said, “Yes, you didn’t have a stroke.”
– Person with PD
In their search for ‘consequential’ symptoms, clinicians often focus on what they feel they have control over, at the risk of not addressing what feels most pressing for patients.
“Everybody’s gotten so specialized, the primary care physician doesn’t want to hear about my voice, they send me to a throat specialist. They say, “Oh, you just have this, take this pill, and wait a month and see if it gets better.” So you wait the month, then you go to the next doctor who says, “Well, you’re just tired, you’re old. You just need some vitamin B.” So then you take vitamin B for a month, and then you go to the next specialist. I wish there was a way to coordinate your symptoms better.”
– Person with PD
Patients
After the overwhelming maze of specialists struggling to pattern-match symptoms, people rarely receive the sensitivity needed during diagnoses to set the right tone for their relationship with this condition.
“My neurologist said “Oh, you’re way beyond my expertise. I can’t help you. You need to go to a mobility disorder specialist.” Then when I got to see him after the MRI of my brain and 82 other tests, he says to me, “Well, you should be really glad you have Parkinson’s.” We looked at him and said, “Really, it’s progressive, there’s no cure, and we should be happy?!” And he said, “Yes, you didn’t have a stroke.”
– Person with PD
Clinicians
In their search for ‘consequential’ symptoms, clinicians often focus on what they feel they have control over, at the risk of not addressing what feels most pressing for patients.
“Everybody’s gotten so specialized, the primary care physician doesn’t want to hear about my voice, they send me to a throat specialist. They say, “Oh, you just have this, take this pill, and wait a month and see if it gets better.” So you wait the month, then you go to the next doctor who says, “Well, you’re just tired, you’re old. You just need some vitamin B.” So then you take vitamin B for a month, and then you go to the next specialist. I wish there was a way to coordinate your symptoms better.”
– Person with PD
After diagnosis, patients and their care teams embark on the endless challenge of interpreting a changing body.
Patients
Symptoms and side effects are more than an error of the body — it’s feedback. Body-signal fluency gives people more tools to manage symptoms in real-time.
“My neurologist said “Oh, you’re way beyond my expertise. I can’t help you. You need to go to a mobility disorder specialist.” Then when I got to see him after the MRI of my brain and 82 other tests, he says to me, “Well, you should be really glad you have Parkinson’s.” We looked at him and said, “Really, it’s progressive, there’s no cure, and we should be happy?!” And he said, “Yes, you didn’t have a stroke.”
– Person with PD
Clinicians
Clinicians rarely get the full picture of their patients’ health in 15 minutes. They must do the detective work of weaving together a patient’s health history from in-person testing and imperfect anecdotes to inform their plan of attack.
“How do you make that one hour with the doctor more meaningful? I think there needs to be more, it’s not just the doctor, but it’s the whole ecosystem that has to support that conversation.”
– Person with PD
Care Partners
As the disease progresses, caregivers become the body, the voice, and the mind of their loved ones, shouldering increasing responsibility over both treatments and everyday life.
“Every time I go to a new doctor, they all want to start off trying all of these different things. I will stand my ground if I know what doesn’t work, and that I don’t agree with that decision and let’s try something else. If it doesn’t make sense to me, I’m going to be Jim’s advocate.”
– PD Caregiver
Patients
Clinicians
Care Partners
Symptoms and side effects are more than an error of the body — it’s feedback. Body-signal fluency gives people more tools to manage symptoms in real-time.
“I need to know how she’s feeling so I can change how I act toward her at that point in time…I wish there was something I could get to help me understand her apathy is a natural thing. I don’t have a good thing except visually knowing how she is, because the only things I can see are visual.”
– PD Caregiver
Clinicians rarely get the full picture of their patients’ health in 15 minutes. They must do the detective work of weaving together a patient’s health history from in-person testing and imperfect anecdotes to inform their plan of attack.
“How do you make that one hour with the doctor more meaningful? I think there needs to be more, it’s not just the doctor, but it’s the whole ecosystem that has to support that conversation.”
– Person with PD
As the disease progresses, caregivers become the body, the voice, and the mind of their loved ones, shouldering increasing responsibility over both treatments and everyday life.
“Every time I go to a new doctor, they all want to start off trying all of these different things. I will stand my ground if I know what doesn’t work, and that I don’t agree with that decision and let’s try something else. If it doesn’t make sense to me, I’m going to be Jim’s advocate.”
– PD Caregiver
While motor symptoms are easier to spot, managing the mind and the mental health of PwND’s plays an equally important role in PwNDs’ experience of wellbeing as managing the body.
Patients & Care Partners
Clinicians
Establishing resiliency and adaptability early helps people handle the turbulence of ND care. Over time, acknowledgment and appreciation create the energetic feedback loop necessary to sustain care without burning out.
“He may feel delighted but he doesn’t say it, or he doesn’t show it on his face. So what’s the point? It’s hard to keep the energy to keep doing it.”
– PD Caregiver
PwND’s and caregivers whose physicians empower them as collaborators are more likely to stick with their treatment plans.
“Until a few years ago, the EU approach was paternalist. You had a patient, make a diagnosis, give a prescription. We called it “observance” – like following an order. People agreed upfront, but didn’t actually do it once they got home.”
– Antoine Piau, MDS & Aging Expert
Patients & Care Partners
Establishing resiliency and adaptability early helps people handle the turbulence of ND care. Over time, acknowledgment and appreciation create the energetic feedback loop necessary to sustain care without burning out.
“He may feel delighted but he doesn’t say it, or he doesn’t show it on his face. So what’s the point? It’s hard to keep the energy to keep doing it.”
– PD Caregiver
Clinicians
PwND’s and caregivers whose physicians empower them as collaborators are more likely to stick with their treatment plans.
Until a few years ago, the EU approach was paternalist. You had a patient, make a diagnosis, give a prescription. We called it “observance” – like following an order. People agreed upfront, but didn’t actually do it once they got home.”
– Antoine Piau, MDS & Aging Expert