September 2026—Helen & HPSF Update
This journey with our sweet Helen has been filled with many ups & downs, but we keep charging forward.
First, we want to say THANK YOU to everyone who has supported Helen and our family since her devastating diagnosis of CLN2 Batten Disease on March 10, 2025.
We have learned that support comes in so many different shapes and sizes. It can be a simple text or email, a phone call, a card, a prayer, a donation to HPSF, or simply a hug. However you’ve chosen to support Helen and our family, we thank you from the bottom of our hearts.
We try our best to personally thank everyone, but sometimes we simply can’t keep up. Please know how much every prayer, message, donation, and act of kindness means to us.
Thank you!
An Update on Helen’s T-Cell Treatment
We had hoped to have Helen’s T cells collected and reengineered by now, followed by an infusion of her newly engineered T cells, which we hope will produce TPP1 — the enzyme Helen’s body cannot produce because of CLN2 Batten Disease.
We came incredibly close. Helen was scheduled to have her T cells collected on July 14th.
Just three hours before the 5–6-hour procedure was scheduled to begin at M Health Fairview Masonic Children’s Hospital in Minneapolis, we received a phone call at 3:00 AM telling us the procedure had to be called off.
Our research team at the University of Minnesota Center for Genome Engineering continued checking and rechecking their work right up until the procedure. In doing so, they discovered a potential problem that could have caused additional issues for Helen.
As devastating as that phone call was, we are incredibly thankful they found the problem before proceeding.
Since July 14th, the University of Minnesota research team has been working nonstop to identify and resolve the issue — and they have.
Helen is now scheduled to have her T cells collected on September 22nd.
Once collected, Helen’s cells will immediately be transported to Case Western Reserve University in Cleveland, Ohio. There, they will go through a manufacturing process to reengineer her T cells so they can produce the TPP1 enzyme her body is missing.
We are reminded over and over again that we are entering unknown territory.
Reengineering T cells to produce the TPP1 enzyme has never been done in a human before.
That is incredibly exciting. It is also incredibly frightening.
How Is Helen Doing?
There is no question that Helen is a fighter and the bravest person we know. Her courage keeps us going.
The reality is that this disease continues to take things from her.
Helen has lost her ability to talk, and her mobility has been terribly impacted. There are also other internal issues that we deal with every day caring for our Sweet Helen.
In June, we visited the Batten clinic at Children’s Hospital Colorado for two days of appointments with specialists, including a 3–4-hour neuropsych evaluation. While heartbreaking, the results were not a surprise.
At 3 years old, Helen was on par with her peers. Two years later, this evil disease has stolen so much from her. Cognitively, Helen is now at approximately a 12–15-month level, and her motor skills are at approximately an 18-month level.
Helen can still eat, but she struggles to get the nutrition and hydration her body needs. As a result, she now has a G-tube (feeding tube), which we use to administer medication and supplement her daily nutrition and hydration.
Helen also suffers from unpredictable seizures from time to time — another scary reality of this terrible disease.
As difficult as it is to watch this disease take so much from Helen, our family has made a lifetime commitment to changing the world for Helen and all children with CLN2 Batten Disease.
We were told from the beginning that finding a cure would be next to impossible. We are not there yet, but we believe we are getting closer.
Our first mission is to stop this cruel disease from taking anything more from Helen. Then our next journey begins — doing everything possible to help improve her cognitive abilities, mobility, independence, and overall quality of life.
We will never stop fighting. We will never stop funding the science. And we will never stop doing everything we possibly can to give Helen the best life possible.
Every Other Tuesday
To help slow the progression of CLN2 Batten Disease, every other Tuesday Dan gets Helen out of bed at 5:00 AM and makes the 1.5-hour drive to Mayo Clinic in Rochester, MN, where Helen’s medical team is waiting.
Helen is lightly sedated and then begins a 4–5-hour infusion of a replacement enzyme that her body cannot produce on its own. The treatment helps slow the progression of this terrible disease, but unfortunately, the man-made enzyme does not last. Within approximately 10 days, its effectiveness begins to diminish.
Two weeks later, Dan and Helen get up before dawn and begin the entire process all over again.
Every other Tuesday.
This is the reality of Helen’s life today, and one of the many reasons we are fighting so urgently for a treatment that can do more than simply slow this disease.
Our hope for Helen’s engineered T-cell treatment is that her own cells can become a continuing source of the TPP1 enzyme her body desperately needs.
This is one of the cruelest diseases on the planet. But through it all, Helen keeps going.
Helen’s New School
Helen started kindergarten at a new school last week!
As Helen’s needs have changed, so have the resources and support she needs throughout the school day. We ultimately felt a change in schools was the best decision for Helen.
The staff at Jonathan Elementary School have been fantastic and so caring toward our sweet Helen.
We are so grateful for the kindness, patience, and love they show her every day.
Allison
We are incredibly fortunate to have the support of our full-time nanny, Allison, who helps care for Helen and the unique, ever-changing needs that come with CLN2 Batten Disease, while also caring for George.
Allison is truly an earthly angel to both of our children. She has embraced Helen’s needs with incredible love, patience, and compassion, and we are endlessly grateful to have her as part of our family.
Thank you, Allison. We love you.
Where Your Support Is Going
Helen’s Pink Sky Foundation has now funded $1,546,056 across our three research teams:
University of Minnesota – Center for Genome Engineering
Latus Bio
Children’s Hospital of Philadelphia (CHOP)
In addition, we have approximately another $300,000–$900,000 in funding commitments that we are prepared to fund.
More than $1.5 MILLION has already gone directly toward research. Every donation, Gala sponsorship, auction purchase, lemonade stand, fundraiser, and act of generosity has helped us get here.
We are committed to changing the world for Helen and all of the other children battling this evil disease, and none of this would be possible without your help. Our family is forever grateful.
Helen’s Pink Sky Foundation 2026 Gala
November 7, 2026 - Hazeltine National Golf Club
Anyone who attended last year’s Gala will tell you it was a truly beautiful and unforgettable evening — filled with fun, laughter, generosity, and so much hope.
We are working hard to make this year’s Gala even more special, and we can’t wait to bring everyone together again for an incredible evening supporting Helen’s Pink Sky Foundation.
Early Bird tickets are available now through October 1st for $650.
If you, your company, or your employer might be interested in helping, we are looking for sponsors and donations toward:
Event Band: $10,000
Food & Beverage: $12,500
Flowers: $3,500
Helen’s Special People Table: $4,800
Researchers Table: $4,800
Can’t make the Gala? Donate a Ticket: $750
We will also have an online auction again this year! If you or someone you know would like to donate an auction item, please visit our event site to submit your donation.
Last year’s Helen’s Pink Sky Foundation Gala raised over $500K to fund research for Helen and CLN2 Batten Disease.
Help us reach our 2026 Gala goal of $750K!
Visit our HPSF Gala event site HERE to learn more and purchase tickets.
Holiday Wreaths & Seasonal Greenery
This holiday season, we are partnering with Mickman Brothers to bring beautiful holiday wreaths and seasonal greenery into your home while also supporting Helen’s Pink Sky Foundation.
Helen's Pink Sky Foundation receives a portion of every sale, so please pass this along to family and friends who might be interested in supporting us this holiday season.
Learn more here:
Wreath Fundraising Code: HELENSMN001
Please Keep Praying
As September 22nd approaches, please keep Helen and the incredible research teams working on her treatment in your prayers.
This next step is a big one. We have come a long way, but we still have a long way to go.
We will keep fighting. We will keep funding the science. And we will keep doing everything possible to bring hope — and ultimately a cure — to our Helen and all children fighting CLN2 Batten Disease.
And please join us on November 7th for Helen's Pink Sky Foundation 2026 Gala. It's such a special night. Buy your Early Bird Gala tickets, become a sponsor, donate an auction item, bid on auction items - We'd love to see you there.
Thank you for everything. We couldn’t do this without the love and support you continue to show Helen and our family every day.
We love you Helen.
Never give up.
Love,
Steph & Dan Born
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