Building a PKD-Free Future

00:10 Dr Karipcin, Columbia University Fertility Center:

It's a privilege to pass the microphone to Mr. Kellner. I say he has a golden heart and a beautiful story to share, and such good intentions to help so many people. So without further ado, I'll pass the microphone to him.

00:26. Richard Kellner, founder of PKD-Free:

Great thank you very much Dr Karipcin. And thank you Dr. Han. And thank you to the PKD Foundation for everything that you do for the PKD community. I am going to share my screen.

00:44. Richard Kellner:

Okay. And I'd like to also thank all of you for listening in today and hopefully what we share with you today and what Dr Karipcin has already been sharing will result in your future generations not needing to think about this.

01:10 So my name is Richard and my journey with PKD started 37 years ago when my then girlfriend of a couple of weeks, future wife, took me home to meet her parents for the first time. And her mother was on home dialysis in between in between transplants. I never really thought about it up until I was preparing this presentation, but I'm actually pretty sure it was a test. Let's find out quickly, you know, this is part of me, this is part of our future, if you're going to run, run now. Obviously I never did. Thank God. She was amazing but Joanne had PKD. I donated the kidney to her 10 years ago. Her sister has PKD, has been on dialysis for 10 years. My nephew has it. My niece hasn't been tested yet. Both of my kids have it. My grandchildren will not. And we actually founded PKD-Free to make sure that that miracle of protecting your future generations from this disease was available to all PKD-impacted families.

02:46 Richard Kellner:

You know, PKD may not be as widespread as cancer, diabetes, and heart disease, but I've heard people refer to it as an orphan disease. It's not an orphan disease. We're not alone with this. There's 600,000 people in the US with this disease resulting in approximately 4,000 kidney failures per year. And as you know, once your kidneys fail, it's a five to seven year wait for a deceased donor kidney and every parent with ADPKD has a 50% chance of passing it down to each of their future children, which is resulting in approximately 7,500 babies being born with PKD each year.

03:40 Richard Kellner:

You know, for the first 30 plus years of my PKD journey, we were told by multiple doctors, yeah, there's nothing you could do about it, you know, with PKD, just wait for kidney failure. You deal with it then. I've spoken to recent medical school grads. By and large, that's still what they're teaching in the medical schools today, but thank God for the PKD Foundation Center of Excellence initiative and forums like this, which are trying to create greater awareness for the solutions that are available today, right?

4:22 Richard Kellner:

Because the reality is there are things that can be done today to increase live kidney donation, for young adults to slow the progression of their PKD, and, what we're here to talk about today is to prevent PKD from being passed down to future generations. And PKD-Free is actively collaborating with the PKD Foundation to make sure that these solutions get out of the medical journals, journals and accessible to PKD-impacted families. Far too many don't even know that this is an option.

05:04 Richard Kellner:

So today we're here to talk about PKD-Free’s PKD-free Babies Initiative. As Dr Karipcin went into, the technology for doing this has been around for over 25 years. It is safe and it is effective, but a big part of our initiative, is just creating the awareness that this solution exists. I saw a recent small poll of relatively proactive PKD-impacted families, and less than a third had actually been informed by their doctors that this solution exists. And obviously of that third, only a fraction had insurance that would cover it. And without insurance, even fewer could afford it. So our PKD-Free Babies Initiative is both creating that awareness, but also providing additional funding and support to help bring about a new generation of PKD-free children.

06:13 Richard Kellner:

We have two grant programs. Our first initial brand program is available to pretty much anybody with PKD going through the process that doesn't have insurance to cover the genetic testing. We will fund up to $3,000 for the funding of the embryo. So when you get to the stage, that you've been through the IVF process, they’ve determined that you've got healthy embryos and the embryos go for the genetic testing. Many times, even if insurance is covering the IVF, it's not covering the embryo testing. So we will fund that.

06:53 Richard Kellner

We knew when we launched the program that that wouldn't be enough to help a lot of families. So we are very close to finalizing our expanded IVF PGT grant program, which is going to provide up to $9,000 of grants to cover both IVF and the PGT-M. And we are actually working with multiple IVF centers on getting them. The participants in this will be entitled to discounts with an ultimate goal of reducing the cost of one round of IVF from approximately $30,000 to $15,000, which will make this solution available to far far more families.

07:39 Richard Kellner::

This is not just about PKD impacted families. There is a societal good that goes well beyond this. When we achieve our goals, kidney failures will, will be reduced by 4,000 annually. Right? We will create a multi-billion dollar savings for the healthcare system and years will be shaved off the deceased kidney donor wait list for all others in needs. Especially when you combine that with another live donor initiative that we're working on to increase live kidney donation. We're also hoping that charities for other diseases, other genetic diseases will look at what we're doing, look at the model of what we're doing, and also follow our lead.

08:40 Richard Kellner:

So we only started this program in July of 2023. So we, we've been going for seven months and so far we have seven medical center partnerships, 12 PKD-free babies on the way where the IVF process is started, some middle of the IVF, some pregnancies. We have another 50 families signed up that we're working with and hoping that many of them start their process. And while we've only been around for seven months, when we launched the program, there were some families that found out about it, and they had already started and a couple of them were already pregnant and in debt, because of it. So we actually retroactively enrolled a couple of families.

09:35 Richard Kellner:

In 2023, we actually had our first four PKD- free babies born as part of this program. These pictures here are Juliana, Charlotte, who was born in December. Her mother is a school teacher who went deeply into debt to make sure that her family doesn't have PKD free going forward. We've helped pay down a little bit of that debt. But the other special thing with Juliana's mom is she has documented on Instagram her entire IVF PGT journey to have a PKD-free future on Instagram at @pkdendswithme. So I encourage any of you looking to consider this, to check that out, and explore Natasha's journey. She's an important part of what we're doing. And as we build a community where families that have gone through this will help support, others that are, that are going ahead.

10:52 Richard Kellner:

I am going to pause for a second and let you take in the words on this page. We are not talking about a solution that's far out in the future. This is here today. It's actually been done before with Tay-Sachs, currently with BRCA. You know, if you've got BRCA your ObGyn is telling you, and a lot of families are going through that to make sure that that gene doesn't pass on. This is a solution that is here today. We could protect our future generations, so they're not having to think about this. Please come join us on this journey.

11:47 Richard Kellner:

Please connect with us on Instagram at @pkd_outreach to stay in touch with our programs. If you actually are interested in any of our grant programs, you could sign up @www.pkdo.org/babies. There's an enrollment form there. And lastly, please feel free to contact me personally with any questions you may have. Thank you again for your time everyone.

12:22 Dr. Heedeok Han, ADPKD Center at Columbia University:

 Columbia University: Thank you so much, Mr. Keller. That was great.

Richard Kellner: Thank you