If you haven’t already, don’t forget to go and read Part 1 of our interview. In Part 1, David Ogman and I discuss his son Jordan’s TECPR2 diagnosis, the diagnostic journey, and how David and his wife were willing to do whatever it took to help Jordan.

Pursuing Research into TECPR2

After having the diagnosis confirmed in Boston, Stacey and David returned to their hotel room and once again jumped into action. They began calling other hospitals, doctors, and researchers – anyone who might have an interest. When they got in touch with doctors in Israel, Stacey and David learned that TECPR2 has a connection with Jewish heritage and background. Although Israeli researchers stated that they had been studying the disease, and worked with a few children, nobody was working on a cure.

So Stacey and David began calling other major medical and research institutions: Johns Hopkins, Stanford, and the University of Pennsylvania. Yet nobody seemed to have an interest in studying TECPR2. And given that there was no blueprint of research, no background in research or drug development, Stacey and David felt like they were really stuck figuring this out on their own.

But then, something changed – David decided to call the University of Florida. Both he and Stacey are alumni, so they thought it might be a good idea to lean on the Gator community. And luckily, the family finally struck gold. David shares:

When we called UF, they told us to get to Gainesville immediately, because they have a world-renowned scientist, Dr. Barry Byrne, who studies ultra-orphan genetic diseases and he’d be able to provide us with some ideas. We got to the UF Powell Gene Therapy Center as fast as we could. Dr. Byrne said that it felt familiar to him because he had worked with other rare central nervous system genetic diseases like Canavan disease, spinal muscular atrophy, and others with even smaller populations.

Moved by the fact that the Ogman family didn’t just take the diagnosis as fate, Dr. Byrne told them that “it was his obligation” to help work towards finding a cure for Jordan.

The Jordan Avi Ogman Foundation to Cure TECPR2

Of course, as many families within the rare disease sphere know, much of the fundraising required to spur rare disease research falls on these families. In this case, David explains that Dr. Byrne said:

What I need you to do immediately is start a foundation, start raising millions of dollars, and then we can start evaluating Jordan immediately. If I say I can do this, are you able to promise me that you’ll raise the millions that this is going to cost?

Knowing that this promise was one which could, potentially, save his child, David had no qualms about agreeing. He and Stacey knew that they would do anything they could – and that’s just what they’ve been doing.

The family launched the Jordan Avi Ogman Foundation to Cure TECPR2 to raise awareness of TECPR2, share Jordan’s story, and fundraise to improve the science and research to move towards a cure. Currently, the Foundation is working to raise $2.5M to fund this cure. David shares:

We still are raising additional financing, but it’s getting there. The science is there now; we’re a couple of years into research and observing tremendous progress in our animal models. It’s going to happen. We’re seeing fantastic results and are already putting in the legwork to pull in the major players and industry partners who are very interested.

If you would like to donate to the cause, you can do so here.

How is the family now?

Right now, Jordan is seven years old; his older sister Kira is nine. David shares that Kira knows what is going on with her younger brother since she has traveled with the family to different locations as Jordan receives therapy. Kira is also a great advocate for Jordan. Says David:

We thought at first that we’d try and hide it from her. But she has seen everything and she wants to do what she can to help her brother. Kira is a great helper. She does speech therapy with him, helps with bedtime, and turns on the oxygen machine at night. It did make her mature really quickly – I think she is so mature and so amazing – but she doesn’t want to lose her brother and she’s always willing to help.

As for Jordan, he partakes in many different therapies to help him gain skills. He does physical therapy, ABA, speech and occupational therapy, aqua therapy, hippotherapy, and even therapy in the gymnasiums. As a result, shares David:

Jordan is speaking more, a lot more words in fact. He’s walking better, even though he doesn’t have much balance. He does still struggle with seeing curbs or getting up steps, and he also displays a lot of behavioral issues. But we’re working on getting him to the best place he can be through therapy.

Advice for the Newly Diagnosed

For those who are newly diagnosed or who have a newly diagnosed family member – whether with TECPR2 or any other rare conditions – David had a few pieces of advice. First, he said, find avenues for support. Throughout this journey, David himself has connected with a number of rare disease dads. Being able to find people who relate to what you’re going through, or who you can bounce ideas off of, can be incredibly helpful. He says:

Don’t be ashamed. Be an Advocate!

On a broader level, David says, people can see if they can find existing foundations or organizations for that specific disease. He shares:

Give them a call. Don’t try to reinvent the wheel if there’s already a foundation out there. Get involved in whatever way that you can. Pass along research. Check clinical trials and see if any exist. If there are, get involved. Raise money. If there is no foundation out there, open one immediately and start calling around to develop a treatment or cure. And rely on your community. The more people you have, the faster you’ll be able to develop a treatment.