You Are the Project Director
Today you have an important job.
You work at a health agency.
Your job is to help more people with Down syndrome join Alzheimer's studies.
Your ideas matter. You can make a real difference.
What Is Alzheimer's Disease?
π§ Alzheimer's is a brain illness.
π It makes it hard to remember things.
π It gets worse over time.
π There is no cure yet. Scientists are working on it.
Did you know?
Alzheimer's affects
millions of people
around the world.
Researchers are
working every day
to find better
treatments.
Optional: learn more about Alzheimerβs
Down Syndrome and Alzheimer's
π§¬
Brain Changes
Start Early
Changes can start
before age 40.
This is earlier than
for other people.
π
A Strong
Connection
Most adults with
Down syndrome get
Alzheimer's if they
live long enough.
π
Research
Can Help
New medicines are
being tested. But
studies need people
with DS to join!
Alzheimer's cause #1: Tau
Inside every brain cell, there are tiny tubes. οΏ½οΏ½These tubes carry food and messages to keep the brain cell alive.
A protein called tau holds these tubes in shape.
What goes wrong in Alzheimer's π
π
Tau gets twisted and tangled.
π§
The tubes fall apart.
π
Messages can no longer get through.
π
The brain cell gets sick and dies.
What Hurts the Brain?
Two things go wrong in Alzheimer's. Both hurt the brain.
Problem 1: Tau
1
Tau holds tiny tubes inside brain cells together.
2
In Alzheimer's, tau gets twisted into tangles.
3
The tubes fall apart. The brain cell dies.
Problem 2: Amyloid Beta (Plaque)
1
A sticky substance the brain makes.
2
In Alzheimer's, it builds up instead of being cleaned away.
3
It forms sticky clumps that block brain cells.
When tau AND plaque build up together, the brain gets very sick. This is Alzheimer's.
Why do people with Down syndrome get Alzheimerβs?
π¬ Watch (0:00 - 0:26)
Learn about someone who is helping
How Do We Treat Alzheimer's?
Scientists use living cells to make medicines. This is called biomanufacturing.
π§«
Start with
a living cell
Scientists use tiny
living cells, like the
ones in your body.
β
π
Grow it in
a big factory
The cells grow in
a huge tank in
a big factory.
β
π
Make the
medicine
The cells make a
medicine that can
slow brain damage.
β
π€
Give it to
people in trials
The medicine is
tested. People
with DS can join.
What Is a Clinical Trial?
π¬
A clinical trial is a research study.
π
Scientists test medicines to help the brain.
π€
People join to help themselves and others.
π‘οΈ
Safety is always the most important thing.
Problem β οΈοΏ½οΏ½People with Down syndrome donβt have enough access to clinical trials
π¬ Watch (1:09 - 1:51)
The Problem We Need to Solve
Problem 1
π
Not enough people are joining the study.
3 out of 5 research sites don't have enough participants.
Problem 2
π
Some people joined but they stopped coming back.
This makes it hard for scientists to learn if medicines work.
Your 3 Jobs
1
Help Families Learn
Teach families about
Down syndrome
and Alzheimer's.
2
Train the Team
Help study staff work
well with people
with Down syndrome.
3
Make It Fair
Make sure people
can say YES or NO
and understand why.
Job 1: Help Families Learn
Many families don't know about the link between Down syndrome and Alzheimer's.
Some families wait until symptoms appear.
But joining a study EARLY is very important.
Your job: Make a plan to reach families early.
π‘ Key Idea
Early action gives
people the best
chance at new
treatments.
Waiting can mean
missing out.
Your Turn! How Would You Reach Families?
π₯
Make a short video
π
Make an easy-to-read booklet
π«
Hold a community meeting
π±
Use social media
If you want, you can try doing this now by creating an advertisement.
Job 2: Train the Study Team
All the people who work in the study need training.
π¨ββοΈ
Doctors and nurses all need to know how to work kindly and clearly with people with DS.
π§βπΌ
Office and admin staff all need to know how to work kindly and clearly with people with DS.
π¬
Lab and imaging specialists all need to know how to work kindly and clearly with people with DS.
π€
Partner organizations all need to know how to work kindly and clearly with people with DS.
Your Turn! What Should Staff Learn?
How to explain things clearly
How to be patient
How to make forms easy to read
How to make people feel welcome
How to listen well
How to ask about someone's needs
If you want, you can try doing this now by teaching a friend.
Problem β οΈοΏ½οΏ½Many people do not understand Down syndrome. οΏ½οΏ½This is one reason why it is important to include people with Down syndrome at work.
π¬ Watch
Job 3: Make It Fair
People with Down syndrome have the right to
understand what they are agreeing to.
They should be able to say YES or NO.
This is called informed consent.
Your job: Make sure the process is clear, respectful, and safe.
Your Turn! What Would Help You Understand?
π
Easy-to-read forms
with pictures
π¬
A video explaining
what happens
π₯
Having a support
person with you
β°
Extra time to think
before deciding
Make Your Plan
What were your 3 best ideas?
π‘ My idea for helping families:
π©ββοΈ My idea for training the team:
β My idea for making it fair:
Share Your Ideas: Choose How!
π£
Tell the group
βοΈ
Write it down
π¨
Draw your plan
π±
Record a video
β
Well Done!
You did the work of a real Project Director.
Your ideas matter.
People with Down syndrome deserve to be
part of research.