Happy Summer, everyone!

We are grateful for you and hope you are well!

Summer is my (Katie) absolute favorite time of year, and I hope you’ve all experienced some moment of exhale in the last few weeks as seasons shift and rhythms reset. We are scooping up as many moments of stillness as possible in the midst of rapid changes in this season. Grateful for a moment on a special day to share some of the highlights with you all.

Introducing The Emma Fund

Today, on Batten Disease Awareness Day, we are launching a charitable fund on Charityvest that honors Emma’s story and loves children with rare diseases.

Over the last two years, Emma’s diagnosis has introduced us to a world we previously knew almost nothing about—the world of rare disease.

We’ve met extraordinary families carrying extraordinary burdens. We’ve learned how many diseases affect only a small number of children, making them difficult to study, difficult to fund, and too often overlooked by systems that naturally prioritize larger markets and larger patient populations.

And yet we’ve also witnessed remarkable hope.

The treatment Emma receives today exists because researchers, physicians, advocates, donors, and families refused to accept that “too rare” should mean “not worth pursuing.” Their work has given children like Emma opportunities that did not exist a generation ago.

Today, on Batten Disease Awareness Day (June 9th), we’re honored to officially launch The Emma Fund.

While we pray boldly for Emma’s healing, we do not want our vision to stop with Emma. We want her story to become a source of blessing for many other children and families facing rare diseases.

Our desire is not simply to seek healing for Emma herself. Rather, we want Emma’s story to become an invitation—an opportunity to participate in God’s work of renewal and restoration on behalf of many children and families facing rare diseases.

Scripture tells us that one day Christ will make all things new. Every disease will be defeated. Every tear will be wiped away. Every broken thing will be restored.

Until that day comes, we believe followers of Jesus are called to participate in that renewal wherever we can.

When Jesus speaks of serving “the least of these,” it’s hard for us to imagine a clearer modern example than children suffering from rare diseases—children whose needs are profound, whose numbers are small, and whose voices are often overlooked.

The Emma Fund is our family’s small attempt to respond to that calling.

Through this fund, we hope to support research, advocacy, patient support, and other efforts that help children and families facing rare diseases experience greater hope, greater dignity, and greater opportunity.

Most of all, we hope this fund points beyond Emma herself.

If her story accomplishes anything, we pray it helps more people glimpse the kind of kingdom Jesus is building—a kingdom where the forgotten are remembered, the vulnerable are protected, and hope is extended even into places where hope can seem scarce.

What The Emma Fund is and how it works

A collaborative fund on Charityvest; anyone can contribute tax-deductibly through the link below.

The Emma Fund is a charitable Community Fund hosted on Charityvest, the charitable giving platform Stephen co-founded and helps lead each day. After spending years helping generous families discover meaningful ways to deploy capital for charitable impact, it felt fitting to use that same infrastructure to create a vehicle dedicated to serving children and families affected by rare diseases.

Anyone can contribute to The Emma Fund through the link below and receive the same tax benefits available for charitable giving.

You can make gifts by credit card without creating an account. If you’d like to contribute using a bank account, appreciated stock, cryptocurrency, or other assets, you can create a Charityvest account, make your contribution there, and then instantly transfer funds into The Emma Fund within Charityvest. Contributions are tax-deductible to the fullest extent allowed by law.

Most importantly, 100% of contributions to The Emma Fund will be deployed for charitable impact.

Our intention is to deploy capital to advance research, support families, accelerate treatments, strengthen advocacy efforts, and create tangible hope for those affected by rare diseases. Funds may be directed either to charitable organizations or to charitable impact-investment structures that align with the fund’s mission and values.

As opportunities arise, we’ll periodically share updates about grants, investments, partnerships, and the impact those resources are helping create, too.

If you’d like to participate, we’d be honored to have you join us. You can do so at the link below.

And how’s Emma?

Eye injections now underway and >50 enzyme infusion treatments complete.

Emma received her first eye injection in March and a second in April, and both were successful! We’re learning that it’s a wild ride when a hospital introduces a new procedure, but we are grateful for the willingness of Atlanta-area teams to come together to make this possible for Emma and the three other children in Georgia battling CLN2 Batten disease. She’ll receive her third injection this month.

Emma received her 51st Brineura infusion last week, and while she is still increasingly behind developmental milestones, we are blown away by the gains she is still miraculously making 2 years after diagnosis. Most notably, SHE JUST STARTED SINGING! Emma has always loved music, but over the last 2 months, she has begun to sing along to her favorites, and we are enjoying every second. Furthermore, she’s not had any notable GI issues since our last update. Much to be grateful for.

On a less exciting note, her brief absence seizures have begun to resurface. They’re especially noticeable with changes in weather, which has been a constant reality in the southeast over the last month. Em will have an EEG next Thursday, June 18th so that her new Epileptologist can have a full view of what’s happening before making any changes to her medications. Please pray for peace for her, for accurate recordings of seizure activity in her brain, and a clear path forward.

Our family is moving to Fayette County later this month

Excited for what’s ahead, grateful for our time in Columbus, but grieving the circumstances.

We are in the process of purging and packing so that we can move to Fayette County, GA, just south of the Atlanta airport, at the end of June. If you’ve been praying for this process, thank you! Finding a house was a mercifully quick and straightforward process with so many threads of God’s kindness woven throughout.

James and Annie are enrolled in a classical school very similar to the one they’ve loved these last two years. Emma is on waitlists for all her therapy services at facilities near our new home. And yes, our nanny, Deacon, is coming with us! And we’ll be close to my (Katie’s) family. We anticipate a lot of beauty in the season ahead.

And at the same time, leaving Columbus could not be more bittersweet. This community has carried us in ways we’ll never fully be able to express. And moving further away from Stephen’s family is a heavy prospect.

This season is unlike any I (Katie) have ever experienced before. We are so grateful. And we are so sad. We are so certain this is where we are meant to be. And we were also never planning to leave Columbus. So much beauty lies ahead. And also so much sorrow.

“Holding grief and gratitude at the same time,” feels like a very buzzy phrase right now…and yet, here we are.

Prayer requests

• A peaceful move and timely on-ramps to new friendships in Fayette County, GA.

• James and Annie as they, for the first time, grieve the changes in the friendships they’re leaving and wonder who their new friends will be.

• Emma’s EEG would yield helpful information and a path toward fewer seizures.

• For the Kump family as we all grieve not being neighbors anymore (we have been living next to Stephen’s family in Columbus, GA the last 4 years.

• Continued health and quality of life for Emma.

• Wisdom in stewarding The Emma Fund faithfully and effectively.

• Meaningful breakthroughs in Batten Disease and rare disease research.

• That our family would continue to walk in joy, gratitude, and trust regardless of what lies ahead

Please let us know how we can be praying for you this summer. You mean so much to us.

We love you all.

With gratitude,
Stephen & Katie