The 2026 National Patient Meeting was held in Chattanooga, TN on June 26th-27th!
The 2026 National Patient Meeting was held at The Chattanoogan Hotel in Chattanooga, TN on June 26th-27th!
What an unforgettable weekend of learning, connection, and inspiration at the 2026 Soft Bones National Patient Meeting!
A heartfelt thank you to our speakers for sharing their expertise and empowering our community with the latest insights into hypophosphatasia (HPP). View the agenda for the full lineup of speakers and sessions. We’re also incredibly grateful to our sponsors and dedicated volunteers. Your generosity, commitment, and support made this weekend possible. The conversations may be over, but the experience doesn’t end here. Stay tuned for on-demand session recordings, our event photo gallery, music created during our group activity, and more highlights from an extraordinary weekend together!
Watch Sessions On-Demand!
Led by Dr. Deruelle, this interactive workshop explored songwriting as a therapeutic tool for emotional expression and connection. Participants broke into small groups, each guided by a songwriter, to create an original song using Suno, an AI music platform. Below are all the songs created by our participants.
HPP Can We Be What We Wanna Be
HPP Can We Be
What We Wanna Be
Verse 1
They knew something was wrong
But never knew what
Everybody said you’re just growing.
Even if it was painful to touch.
We all have different journeys
Some of us ride on a gurney
We’re all afraid to dream
Because the pain is so extreme
Chorus
We all have HPP
But can we be who we want to be
We all have HPP
But can we be who we want to be
Verse
Riding my bike
Broke my teeth
Pain came and no relief
Doctors said it’s complicated
They misunderstood
I kept being dismissed.
Prognosis was not good
Chorus
We all have HPP
But can we be who we want to be
We all have HPP
But can we be who we want to be
HPP Chose Me
HPP Chose Me
[Verse 1]
I’m going up a mountain
I didn’t choose
HPP chose me
Now I pay the dues
People point and smile
Like they: know the cost
But they don’t see the pieces
The ones ive lost
[Pre-Chorus]
I keep one foot moving
Even when I shake
You can’t read my weather
From the face I make
[Chorus]
HPP chose me
HPP chose me
It’s mean to me
But I’m still me
HPP chose me
HPP chose me
Others can’t see
What’s inside of me
[Verse 2]
Morning hits the window
And I count my breath
Some days I feel like stone
Some days I feel left
I wear the quiet heavy
Like a coat of lead
Still I keep on climbing
With the words unsaid
[Pre-Chorus]
I keep one foot moving
Even when I shake
You can’t read my weather
From the face I make
[Chorus]
HPP chose me
HPP chose me
It’s mean to me
But I’m still me
HPP chose me
HPP chose me
Others can’t see
What’s inside of me
[Bridge]
If you want the truth
Come stand where I stand
This mountain takes its toll
But it never takes my hand
I’m not what you assume
I’m not what you saw
I’m still climbing up
With the cracks and all
[Final Chorus]
HPP chose me
HPP chose me
It’s mean to me
But I’m still me
HPP chose me
HPP chose me
Others can’t see
What’s inside of me
HPP chose me
HPP chose me
I’ll reach the peak
Still carrying me
No Shame in Pain
No Shame in Pain
[Verse 1]
I sit in that white room
under that hard tube glare
You write your little notes down
like I ain’t even there
They call my pain a shadow
say it’ll pass by dawn
But my body’s been a battleground
way too long
My mama holds the doorway
my hands shake in her hands
My partner learns my silence
like reading weather bands
The pills don’t name the monster
just the smoke and the sound
And every “maybe later”
keeps my family pinned down
[Chorus]
Tell me you hear me now
Tell me you hear me now
I been here all along I been here all along
Say my name out loud
Say my name out loud
I’m still standing here
I’m still standing here
[Verse 2]
Then one day somebody listened
like they meant every word
A name fell into place there
and the whole room turned
Not fixed, not clean, not easy
but I finally knew why
A map for all this aching
and a light in the sky
Now the morning don’t look endless
now the road has a line
I still limp through the hard days
but I’m not walking blind
There’s a dawn on the water
there’s a spark in the rain
I got proof I was living
through the shape of the pain
[Chorus]
Tell me you hear me now
Tell me you hear me now
I been here all along I been here all along
Say my name out loud
Say my name out loud
I’m still standing here
I’m still standing here
[Verse 3]
I found folks in the dark room
with their stories worn smooth
Same scars, same slow mornings
same hard thing to prove
We trade tips and casseroles
and the names of good days
We laugh like we’ve been rescued
in a hundred small ways
[Final Chorus] Tell me you hear me now Tell me you hear me now I been here all along I been here all along Say my name out loud Say my name out loud I’m still standing here I’m still standing here
[Final Chorus]
Tell me you hear me now
Tell me you hear me now
I been here all along I been here all along
Say my name out loud
Say my name out loud
I’m still standing here
I’m still standing here
Our Forever Journey
Our Forever Journey
[Verse]
I’ve been let down, frustrated, forgotten, and in pain. Life isn’t what I thought it’d be. It’s all been rearranged. Looking into the distance with no answers in sight; realizing at the end of the day, this is my own fight.
[CHORUS]
We’ve all been on this journey. But our paths lead different ways. What brings us altogether. We all get through the haze.
[BRIDGE]
We experience it differently, you and I. We’re all so different and yet so alike. So let’s come together to navigate this life; Celebrating all the wins- big and small. Knowing one another will help us through it all.
[CHORUS]
We’ve all been on this journey. But our paths lead different ways. What brings us all together, we all get through the haze.
Our Own Waves
Our Own Waves
[Verse 1]
Bittersweet on my tongue
I won the argument, now what?
Chick fil a in a paper bag
Cold fries on the passenger side
Trudging through the mud again
With your words stuck on my boots
I looked at the sky and said
Maybe pain can tell the truth
[Pre-Chorus]
They are not alone
No, they are not alone
I felt the weight
Then I let it go
[Chorus]
We all have our own oceans
We all have our own waves
We all have our own oceans
So I keep moving anyway
Finding the light
Finding the light
We are all fighting our own waves
(our own waves)
[Verse 2]
You said, remember my name
So I carved it in my chest
Not for trophies, not for pride
Just to know I did my best
Bones give us power
When the world gets heavy on us
Even broken things can stand
Even shaking hands can trust
[Pre-Chorus]
They are not alone
No, they are not alone
I hear the storm
But I hear hope
[Chorus]
We all have our own oceans
We all have our own waves
We all have our own oceans
So I keep moving anyway
Finding the light
Finding the light
We are all fighting our own waves
(our own waves)
[Bridge]
If I fall, pull me up
If you fall, I’ll do the same
There’s room enough in this dark
For every scar and every name
No one sails it by themselves
Not you, not me, not today
[Final Chorus]
We all have our own oceans
We all have our own waves
We all have our own oceans
So I keep moving anyway
Finding the light
Finding the light
We are all fighting our own waves
(our own waves)
We are all fighting our own waves
(our own waves)
We Are Not Alone
We Are Not Alone
This is overwhelming.
I wish I could help my loved one end her setbacks in life.
I wish I could take your pain away.
I wish people knew more.
Going to be. All right
We’ll stand together we are not alone we are not alone.
We’re in it together we will persevere and supporting one another
Bringing knowledge to the message.
It’s definitely Nice to know other people have the same thing going on.
Everything’s going to be all right.
We’ll stand together we are not alone we are not alone.
All right?
Won’t stand together we are not alone we are not alone.
Soft Bones
Soft Bones
This doctor says one thing, this doctor says smile, but those twenty steps feel like twenty miles.
It’s a long long journey,
They tell me its in my head.
Because they don’t understand.
because I feel it in my bones.
I feel it everywhere.
I have hope and I have dreams
I have you I have family
I got soft bones
we will rise up together.
I knew the minute the doctor walked thought the door she couldn’t help me but I didn’t know how much she would hurt.
But then I found Soft Bones,
And the truth came shining through —
A little hope, a little healing,
And a family I never knew.
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