CHANGING THE ODDS

How Illinois parents Kyle and Megan Kempf are helping unite families—and accelerate hope—for children with Sanfilippo Syndrome

---

---

Interview conducted July 2026

When a child is diagnosed with Sanfilippo syndrome, everything changes.  Questions quickly outnumber answers. Parents search for specialists, spend late nights reading medical journals they never imagined opening, and desperately seek out anyone who has walked this road before.

Like so many parents in our community, Kyle and his wife Megan were thrust into a world they never expected to enter. But instead of stopping once they found answers for their own family, they chose to share everything they learned with others. In the process, they've helped build something far bigger than they ever imagined—a growing network of families, researchers, physicians, biotech companies, and foundations working together to change what's possible for children living with Sanfilippo Syndrome. And that's the kind of story worth sharing.

Like many rare disease families, the Kempfs spent years searching relentlessly for an explanation for their daughter Poppy's developmental delays. Specialist appointments, developmental evaluations, MRIs, and countless tests produced more questions than answers.

Finally, after pursuing comprehensive genetic sequencing, they received the diagnosis they had never expected: Sanfilippo syndrome type B.  Three weeks later came another heartbreaking discovery. Their youngest child, Oliver, was diagnosed with the same disease.

Kyle doesn't pretend those first weeks were anything but devastating. But after the initial shock, he and Megan leaned into the strengths they already possessed.

Kyle laughs that he's the researcher in the family. He's the one who enjoys digging through scientific papers, reading clinical trial updates, and asking detailed questions of scientists and physicians. Megan, meanwhile, has a gift for storytelling—taking complicated science and translating it into language families can actually understand. In addition to helping launch the Type B fundraising initiative, the Kempfs have also launched Project Poppy- the nickname for a next-generation Type B gene therapy funding by family fundraising by the Paris Brain Institute. 
​  
What impressed me most during our conversation wasn't simply how much Kyle has learned over the past year. It was his willingness to keep learning - and passing along that knowledge to other families and other sub-types (A, B, C, or D) within the Sanfilippo space.

Rather than waiting for information to find him, he started introducing himself to the people doing the work. Researchers. Biotech companies. Foundation leaders. Other parents.  Some conversations lasted only a few minutes. Others became lasting relationships.

One discussion at last summer's National MPS Society Family Conference proved especially significant.  Kyle met Dr. Paul Harmatz, who encouraged him to take a closer look at a promising treatment program for children with Sanfilippo type B. Kyle left that conversation asking a simple but powerful question: "What if families could help move this forward?"

That question eventually became much bigger than one family.

Working alongside researchers, biotechnology partners, and several Sanfilippo organizations, the Kempfs helped bring people together around a shared goal—moving potential treatments toward children who desperately need them. The challenge was enormous. Millions of dollars needed to be raised.

The deadline was only weeks away.

Instead of seeing an impossible number, the Kempfs saw an opportunity to unite a community. It began with a Facebook post and a Zoom call involving a small group of families. Then the momentum started. Parents shared the story. Advocates spread the word.  Communities rallied. Major donors stepped forward. Professional athletes lent their support.

What started as a conversation quickly became one of the most remarkable grassroots fundraising efforts our rare disease community has ever witnessed.  By the end of the campaign, more than $10 million had been committed through the combined generosity of families, foundations, and supporters to help advance treatment efforts for children living with Sanfilippo type B.

Yet if you ask Kyle about those accomplishments, he rarely talks about himself.

Throughout our interview, he consistently redirected credit toward researchers, physicians, biotech companies, foundations, and fellow parents. That's something I genuinely admire.
Over the years, I've interviewed many families affected by rare disease. Every parent brings something different to this fight. Some become fundraisers. Others become storytellers. Some immerse themselves in the science. Others quietly connect people behind the scenes.

Kyle and Megan have become connectors.  They're willing to ask questions. They're willing to listen. Perhaps most importantly, they're willing to share what they've learned so the next family doesn't have to start from scratch. And that may be their greatest contribution.

As this year's National MPS Society Family Conference approaches (end of July), the Kempfs are looking forward to reconnecting (and meeting 'in person' for the first time) with many of the families they've come to know over the past year. Megan has been invited to speak about the Type B journey, while researchers will provide updates on several treatment programs now moving forward. It's a fitting reminder of how quickly things can change when families, researchers, and organizations choose collaboration over isolation.

When our conversation turned toward advice for other families, Kyle didn't focus on fundraising.  He talked about community.  He encouraged parents to connect with one another.  Schedule the Zoom call. Reach out. Share experiences. Ask questions. Keep learning together. That message stayed with me long after our interview ended.

Changing the odds doesn't always begin with a scientific breakthrough. Sometimes it begins with a conversation. One family reaching out to another. One researcher willing to answer an email. One parent deciding not to keep what they've learned to themselves.

That's how communities grow. That's how hope spreads. And little by little, that's how families like Kyle and Megan Kempf are helping change the odds—not only for Poppy and Oliver, but for children they may never meet.

To learn more about and follow along with Kyle and Megan's Sanfilippo type B journey, Project Poppy, and other ways to support ongoing research and advocacy, visit their website at www.projectpoppy.com. And follow them on Facebook and Instagram @curepoppyandoliver.

---

Video clip #1 (1.5 minutes long): Kyle discusses the importance of community and coming together for families of children with rare diseases.

Join up. Meet up. Just keep talking "

---

Video clip #2 (3 minutes long): Illinois dad Kyle Kempf early on helped connect the dots to launch an ambitious fundraising campaign in 2025 to treat children in the U.S. with Sanfilippo Syndrome type B. Here's how that campaign came together.

We were told we needed to raise $3.8 million by December 1st, which was only 5 weeks away. There was no time to waste, and we got right to work "

---

​FULL INTERVIEW (13 minutes)

The momentum kept building and the stories continue to get out "