For Poppy + Oliver
Two kids. One rare disease. A race against time.
For the first time in history, a therapy for Sanfilippo Syndrome Type B is within reach.
In 2025, families fighting Sanfilippo Syndrome Type B (MPS IIIB) raised $5.5M+ toward an Expanded Access Program (EAP). Our family was responsible for $520,000+ of that total. That milestone is a huge win, but this battle isn't over.
(Click here to watch how families joined together to reach this milestone in just over a month.)
Our next goal: $500,000
(Treatment-Ready Reserve)
Sanfilippo Syndrome Type B is a rare, fatal childhood disease often compared to childhood Alzheimer’s. It slowly steals a child’s ability to talk, walk, eat, and eventually, to live. There has never been an approved treatment.
Until now.
A groundbreaking therapy is emerging, and families across the country are linking arms to help bring it forward. Together, we have the opportunity to make history for Sanfilippo B and open access to treatment for the first time ever.
Even with this historic milestone, there is no guarantee that Poppy or Oliver will receive treatment through this EAP.
Expanded access is limited, and decisions depend on medical criteria, timing, and program capacity. We’re continuing to raise because: the EAP may need more funding to expand or continue, and/or we may need to pivot to a different therapy pathway as options and timelines evolve. These funds are held securely and kept ready to deploy directly toward the next confirmed step as soon as the need is clarified.
In rare disease, being ready isn’t “extra.” It’s how families protect time.
Meet Poppy & Oliver
Our children, Poppy (9) and her little brother Oliver (2), are full of light, laughter, and joy. They adore music, family walks, and each other. They are not defined by this disease. They are beautiful, vibrant children who deserve a future.
We believe God has placed our family in this story at this exact time: not for sorrow, but for purpose. We’re not waiting for hope—we’re running with it.
A Movement Has Begun
This is no longer one family fighting alone. Parents across the country, leading experts, and nonprofit partners are coming together with urgency and resolve. We’re seeing momentum build in ways we never expected — medically, relationally, and in the hearts of people who are stepping in to help.
What once felt out of reach is now becoming possible. We can’t do everything, but together, with God guiding our steps, we can do this.
Our Story
Just months ago, we heard the words no parent is prepared for: “Your daughter has Sanfilippo Syndrome.” We were shattered. Then, weeks later, we learned that Oliver had it too.
We prayed. We wept. We asked God for direction.
And then doors began to open. Conversations we never expected. Experts we didn’t know how to reach. A therapy that seemed out of reach for years was suddenly closer than ever. The timing was nothing short of miraculous.
This path is not guaranteed for any individual child — including ours — but this opportunity could open the door of access for dozens of children, and change what’s possible for every family diagnosed in the future.
How You Can Help
Whether you can give financially or not, you can play a role in changing history.
1. Pray
Pray for the children impacted by Sanfilippo B. Pray for wisdom, favor, and for God to move through every detail. We have seen answers to prayer in action. Prayers are our biggest asset.
2. Share
Awareness is fuel.
Share this page. Tell your community. Text it to a friend. Post it.
One share could be the one that changes everything.
3. Give
A gift of any size truly matters.
💜 $10 keeps hope moving
💜 $100 brings treatment closer to children who need it
💜 $1,000 helps rewrite the future for Sanfilippo B
Your gift doesn’t just help our family — it helps create access for many children battling this disease.
-- Donate securely online here (transaction fees apply; donors may opt to cover them).
-- For gifts of $500 or more, checks may be made payable to:
Cure Sanfilippo Foundation
Memo: For Poppy + Oliver
P.O. Box 6901,
Columbia, SC 29260
We Believe This Is a God-Written Story
We are moving forward in faith. We are believing that God is not finished, that He is opening a way where there wasn’t one, and that hope is rising for these children.
Thank you for linking arms with us.
Thank you for believing for more.
For Poppy. For Oliver. For every child still waiting.
Let’s make history for Sanfilippo B — together.
Follow Our Journey
Stay connected and share our journey:
Facebook: @poppyandoliverkempf
Instagram: @poppyandoliverkempf
TikTok: @curepoppyandoliver
Video Credits
Our heartfelt thanks to Adam Bradley, friend and filmmaker (spiration.tv). Adam has known our family for years and brought his exceptional skill, artistry, and compassion to this project — offering his time and talent to help tell our story and the hope behind it.