414 – Hugh Hempel of Denver, CO Rare Disease Entrepreneur, Father Of Identical Twin Girls With Niemann Pick Type C – Pt. 2

Transcript:

Hugh Hempel is a technology industry veteran turned health care entrepreneur

Hugh Hempel: And so many children got treated using the same protocol that we created for Addie and Cassie, many of whom I’ve met and are leading decent lives and way past their, you know, their prognostic outcome. For me, it’s not how I planned it, but my work at N1C right now is essentially an extension of the twins legacy for me. And so I’m grateful that they gave me that path, to pursue because it is my why, it is what I’m super passionate about.

David Hirsch: That’s our guest this week, Hugh Hempel, a technology industry veteran turned health care entrepreneur. Hugh and his wife Chris are parents to Addie and Cassie, who very sadly passed away at age 15 from a rare and fatal disease called Niemann Pick Type C. We’ll hear about the Hempel family and about Helen Cassidy’s quest to find a cure to this ultra rare disease in this final installment of this two part interview. Dad to the dad. You’re not on your own.

Hugh Hempel: We walk this road together, hard and whole.

David Hirsch: Now say hello to the founder of the Special Fathers Network and host of the Dad to Dad Podcast, David Hirsch.

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David Hirsch: Hi, I’m David Hirsch, host of the Special Fathers Network dad and dad Podcast. The Special Fathers Network Mastermind Group experience is the most comprehensive program the 21st Century Dads foundation offers. Dads raising children with special needs. Meet virtually on a weekly basis and form meaningful relationships while sharing weekly wins, discussing books and sharing heartfelt challenges. The Mastermind Group is free for the first 30 days. Stop trying to figure out things on your own. I invite you to join one of the existing Special Fathers Network Mastermind groups. You’ll meet some extraordinary dads, exchange a lot of best practices and recharge your fatherhood battery for the journey ahead. It might just transform your life like it’s done for so many others. For more information, please see the show notes or Simply go to 21st centurydads.org.

David Hirsch: Through every season, in every stride, great dads are present. 247365. And now let’s listen to the conclusion of this conversation between Hugh Hempel and David Hirsch.

Hugh Hempel and his wife founded the Addie and Cassie Fund

David Hirsch: I’m thrilled to be talking today with Hugh Hempel of Denver, Colorado, a technology industry veteran turned healthcare entrepreneur. He and his wife founded the Addie and Cassie Fund and are parents to twin daughters diagnosed with Niemann Pick Type C, a form of childhood Alzheimer’s. Hugh, thank you for taking the time to do a podcast interview for the Special Fathers Network.

Hugh Hempel: My pleasure, David. It’s good to be with you.

David Hirsch: You and your wife Chris been married for 25 years and are the proud parents of identical twin daughters Addison and Cassidy. The girls were born in January 2004 and were diagnosed with Niemann Pick type C, a, type of childhood Alzheimer’s, a very rare neurological degenerative condition. Despite heroic efforts to find a cure and treatments, very sadly, the twins passed away in 2019 at age 15. I’m thinking about supporting organizations and I’m wondering what comes to mind as far as organizations that the girls depended on or benefited from or that your family, for that matter, benefited from. And I know that you made reference to1, the ERA Prosegian medical research Foundation. I’m wondering what other organizations come to mind?

Hugh Hempel: Well, I would say top of the list is Oakland Children’s Hospital, Children’s Hospital of Oakland, Cho. And the doctors there. In particular, Dr. Caroline Hastings, who was a pediatric oncologist, who would, spend a day, a week or two days a week in Reno. And that’s how we got to meet her. we were referred to her by our pediatrician in Reno. And Caroline did almost all the heavy lifting with respect to getting the FDA to agree to do the treatments that we did, many of which were done down in Oakland at her hospital. So that’s the first and foremost. Chris and I formed the Gaddy and Cassie Fund, as you mentioned. So I have to give a recognition of that organization not because we founded it, but more importantly because the community of Reno and Chris and my friends and family from the Bay Area and from all over the country for that matter, donated millions of dollars to allow for us to have the resources to do the research we did and to push the idea of treating the kids forward, allowed us to pay to hire consultants to do the FDA work. So as an organization that was critical. Dr. Mark Patterson at the Mayo was instrumental. The NIH and their natural history study was important to making our case with the FDA in terms of the risk reward analysis for doing the treatments and being more aggressive in that context. I mean, those are the ones that come to

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Hugh Hempel: mind immediately. And I’m sure I’m missing several others because it certainly takes a village, so to speak, to be able to p this off.

David Hirsch: Yeah, well, thanks for providing a highlight as it relates to the Addie and Cassie Fund, which I remember was founded in 2007, the mission of which is to fund therapies that can have very near term impact to saving the lives of NPC children.

The Hempels have been researching rare diseases for 20 years now

The programs, what, what were some of the things that transpired that come to mind when you think about the Highlights from the last. I guess it’s better part of 20 years, right?

Hugh Hempel: Yeah. Yeah. Not even sure where to start to answer that question. You know, the funding we did, the. Addie and Cassie helped to fund work in the broad NPC community with scientists who were basically studying the gene, the method of action of the drugs, the cycloduction itself. We had, genetic mouse models built, that were replicants of the genetic condition that my wife and I have, which, of course, ultimately results in. We called the mice Imagine in Pioneer. And those mice are still being used out there. They’re held at Jackson Labs, and they’re still being used in research, in the space.

David Hirsch: I remember seeing this really powerful video, that Dr. Sanjay Gupta did back in November of 2014. For nearly four years, the Hempels have allowed me to follow along on a journey where the word no is not an option. It was really frustrating because, you know, it’s difficult when you know something’s wrong and then you can’t really get an answer. What was the big takeaway from that?

Hugh Hempel: Well, I think the. The way he positioned it is that, in particular, my wife Chris, but we as a family and as a couple, you know, sort of did whatever it took to develop a therapy for our children and ultimately for other children. And I think he just wanted to tell that story. He followed us and worked with us, his crew did for quite some time. He actually scrubbed in when the twins had, brain surgery in Oakland to implant the reservoirs in their brains. His crew was there for that. His crew was there for the original initial lumbar puncture treatments with the twins. So he followed us for quite some time and told the story, in a special that he did. And so we were. He’s an amazing doctor in and of. You know, I mean, obviously he’s a personality, but he’s also. He himself is a neurosurgeon and was very, very compassionate with us and supportive of what we were doing and was a real joy to spend time with him.

David Hirsch: Yeah, well, I had watched it and I thought, wow, this is very thorough. Right. Like you said, it wasn’t like, oh, gonna sort of like, beam, in for a week, couple weeks. You know, it was over a number of years. Right. That they had put together this story. And, you know, it seemed like it would have raised a lot of visibility. Right. For the work that you were doing in the Ad Cassie Fund, and was a big bump. Right. A big boost for the research, that was taking place at the Time.

Hugh Hempel: Yeah, it definitely raised the visibility, which was part of the goal. I think perhaps more importantly, my sense is that it helped to encourage parents faced with the same challenges that Chris and I were faced with to dive in and try and make a difference in a similar way. So I’m hopeful that folks look at what we’ve done and find hope and inspiration in doing that. As difficult and daunting as it can be, sometimes it’s worth it. It’s worth the effort.

David Hirsch: M so there’s a documentary. Hear us now.

Hugh Hempel: Up until they were three years old, the girls were just going through the normal process, getting their vaccinations and regular checkups, and they were healthy.

David Hirsch: Our life was perfect.

Hugh Hempel: And then the day came where we found out that they had enlarged spleens.

David Hirsch: If you have symptoms early in life like they did, the average lifespan is probably about 10 years.

Hugh Hempel: There’s nothing worse as a parent than to hear your child’s dying and there’s nothing you can do. There’s a organization, out of Kansas City, the Kauffman foundation, which was created to advance entrepreneurship in medicine. One of the directors at the time, Kaufman, came to us and said they’d like to use our story as the basis for creating a documentary that was, essentially designed to discuss the challenges that rare diseases face in getting drugs to market. It was amazing opportunity to come together and say, this is the state of the art in rare disease development, and this is what needs to be done to change it. For me, the main takeaway that I was quite passionate about and remain passionate about today is the importance of breaking

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Hugh Hempel: down the silos and making particularly publicly funded, which is the majority of academic research, which is publicly funded by the feds, to make that research publicly available and shared widely long before it’s published. Ideally, too much academic science is taking place in silos, and people don’t share because ultimately they are rewarded for being secretive. And that has to change. I mean, we’re spending literally hundreds of millions, if not billions of dollars a year in that space. And it’s m not being effectively, used because of, again, deep inefficiency and work that’s being replicated over and over again, by organizations that just, you know, are not incented to share. I think that system needs to be overhauled.

David Hirsch: Yeah. Point well made.

Global Genes Rare Project focuses on patient advocacy and education

So, Global Genes Rare Project. What’s your connection there? It goes back, again, 15 years or so.

Hugh Hempel: Yeah. When the twins were first diagnosed, Nicole, Boyce, who founded the Rare Original Children’s Rare Disease Network, which is what it was called. Reached out to Chris and they became quick friends. And Nicole was putting together at the time, you know, it was her passion. She wasn’t even literally a rare disease parent. She just knew many rare disease parents and felt the calling to dive in and help out. And she’s been doing it ever since. She and I are dear friends and work together at N1C. She’s on the board of the organization. I’m currently working with the N1 collaborative. And I’ve known Nicole, I guess, like you said, for, I don’t know, 15 plus years. And I’ve been on the board of Global Jeans since those early days in a variety of different ways of trying to help out. Global Genes is very focused on patient advocacy and helping parents form funds like the Addie and Cassie Fund on understanding where the challenges are in terms of moving towards a therapy on, individual, you know, sort of rare disease by rare disease basis. It’s been instrumental, I think, very instrumental. Nobody would disagree in terms of making a huge difference in the education of parents and patient advocates and what they need to do to be able to, you know, move the ball forward. So I’ve been proud to be involved in that for quite some time. And so the work they’re doing is, that we’re doing, I would say is I think making a, big difference.

David Hirsch: Yeah. Thanks for sharing. She is dynamo.

Nicole Boyce: Technology is enabling cost-effective treatments for rare diseases

Nicole Boyce, you made reference in passing to n1c. What is n equals one collaboration.

Hugh Hempel: So the n equals one collaboration is fascinating backstory. It was founded by Julia Vittorello, relatively famous, also rare disease mom, whose daughter Milo, suffered from debilitating again neurodegenerational disease. There’s genetic. And she worked with Tim Yu, who was the other co founder of the N of 1. Tim Yu’s lab is at Boston Children’s Hospital and they worked together to create the first individualized treatment for this particular genetic disease. Anyway, long story short, they recognized the same, things that Nicole and I had worked on at Global Genes that there needed to be advocacy and there needed to be lot of work helping the public and in particular the regulators and the legislature, in terms of understanding what it was going to take to treat individually, you know, whether it’s rare diseases or even in some cases some of the bigger diseases. So N of one is, stands for exactly what it sounds like, individualized medicine and is predominantly a consolidation of predominantly academic researchers and clinicians from around the world, literally internationally. I think there’s somewhere in the neighborhood of 12 or 1300 active participants in this organization right now who are all sharing information as it relates to bringing forth individual treatments for specific genetic variants. Wonderful, work and it’s got a lot of actually publicity and press just in the last couple months with the first treatment, using gene editing story, that you could look into if you’re interested about baby kj. But it’s gotten a lot of interest in Washington with the new administration. And the FDA has now just recently come out with, guidance specifically related to the treatment of individuals, using a variety of different technologies, including gene editing. So one of the things that’s happened in the rare disease community is that technology, particularly CRISPR and other similar technologies, are now enabling the potential to allow us to cost effectively treat individuals. There’s a lot of ethics and safety considerations in all of that, but we’re working through it and this is momentous progress in my mind. It’s the perfect storm of technology meeting

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Hugh Hempel: awareness around the importance of being able to treat what we call the long tail of rare disease, meaning the literally millions of patients who have a disease that’s either unique to them or unique to a very small population.

David Hirsch: Well, it sounds like a lot of promise because if you’re talking about individualized medicine, particularly in the rare disease space, there’s no motivation, incentive, certainly financially for these large pharmaceutical companies to do any research. Right. Support any research, because, you know, there’s no payout. Right. No realistic payout to be had. That being said, that doesn’t mean the need is any less. And if you string together all these rare diseases and the number of people collectively that are touched by them. Right. It’s a very large population. But you know, because their diseases are so unique or different, it seems like without something like this, there would be no realistic opportunity to address them, identify treatments or potentially cures. And I think that this idea of aggregating, the big data right now that we have the storage space for the data, now we can start crunching the data and hopefully with the use of AI, you know, sky’s the limit, you know, who’s to say, you know, where this all goes?

Hugh Hempel: Yeah, that’s specifically the project I’m working on right now at N1C is I’m working with a variety of different collaborators, organization called Critical Path Network, or CPATH for short. They’ve been collecting clinical data in the rare space for years now, funded by combination of the NIH and public funding. Also another organization, Jackson Labs, which is renowned for their mouse models and preclinical and toxicology work, working with them and CPATH to build out a database of both pre clinical and clinical data in the rare disease space. And then the goal is to put a layer of AI on top of that to be able to analyze that big body of data for trends and for crossovers and frankly to also create a body of safety data that will allow the regulators to be more comfortable at a system or a platform level to approve the treatment of individuals, without having the daunting, what is currently a two year multimillion dollar endeavor to get toxicology done for a particular drug that’s just obviously not scalable. So we’re trying to work to allow data to inform that process and drive the cost and the timing of all of that down rapidly.

David Hirsch: Thanks for sharing an interesting conversation. A couple three years down the road to do a follow up.

David Hirsch: We’ll be back with more of the conversation on the Special Fathers Network Dad to Dad Podcast in just a few moments.

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David Hirsch: So something unrelated to what we’ve discussed. is the TEDx talk that you gave why I changed my mind about medicinal cannabis. And I’m wondering if you can, provide our listeners with the backstory on what motivated you to put yourself on a stage, do what most people would be very fearful of. I remember before I gave my TEDX Talk back in 2015, it was like one of the most challenging things that I’ve ever done in my entire life. Right. Just to get up there and talk in front of a live audience. In fact, I remember at the beginning, I don’t think it was part of my recorded TEDx talk, and I just finished riding my bicycle from Santa Monica to Chicago, you know, 2300 plus miles in 21 days. 112 miles a day on average. Most people are like, how the hell did you do that? You know, as a 54 year old. And I said that was a lot easier than getting up here on the stage and giving this talk.

Hugh Hempel: Yeah.

David Hirsch: So what’s the backstory on your talk?

Hugh Hempel: Well, the work that we did with Addie and Cassie had become, you know, somewhat known in the, in the Reno community and One of the professors at University of Reno reached out to me and asked me if I’d like to do a TEDx talk. And it wasn’t 100% clear right from the get go what it was going to be, be about. And ultimately I chose to talk a little bit about the experience I had had using cannabis oil, specifically cannabidiol oil, CBD oil, to treat Addie and Cassie’s profound daily or hourly seizures and to try and get them off of the benzo medications that they had been taking in order to manage their seizures, which those benzos had just turned them into zombies and they had no quality of life whatsoever. So I got, if you want to call it, I got pressed into duty to become an advocate for medicinal cannabis and decided to do the talk

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Hugh Hempel: on that subject. What goes through your mind when I tell you that my 11 year old twins are using marijuana? The truth of the matter is most of us don’t think about medicine when we hear the word marijuana.

David Hirsch: M.

Hugh Hempel: I admit, I’m embarrassed to admit that up until two years ago I was completely misinformed about marijuana. While it was only a 10 or 11 minute talk, it was it was a major effort to do it. And I give a, I want to tip my hat to the TEDx and obviously the big TED organization for putting those talks together. They truly are making a difference in the world and I was very honored to participate in any small way in that context. I, you know, I tried my best to bare my soul and that’s always, that’s also always a bit of a challenge. so hopefully, folks were, you know, informed by that. I think so. And it was a, it was a great experience. I would encourage anyone who has the opportunity to dive in. I’d love to do another one.

David Hirsch: Yeah, I would. Ditto that. And I thought one of the most touching things was right at the very end of your talk, the girls, Chris rolled out one of them and somebody else rolled out one of the other girls. And I think it was right around, if not on their birthday in January.

Hugh Hempel: Yeah, I coincidentally gave the talk on their birthday.

David Hirsch: Yeah. And the audience sang Happy Birthday right to your girls. I’m like, oh my God, that was so touching. And I’m sure that that’s one of the only, if not the only time in TED. TEDx history that people sang Happy Birthday.

Hugh Hempel: Yeah, I think you’re probably right. Yeah, I mean I was a, you know, a tearful mess at the end for I suppose, obvious reasons. and it was not Something we had planned. It was a very spontaneous thing, that we decided to do the day before, and arrange to have the girls there on the stage to bring them out. so it was very cool. Yeah, very touching moment.

David Hirsch: I can highly recommend that.

Simon Sinek offers advice to parents facing difficult diagnosis

So I’m thinking about advice now, and I’m wondering what advice you can offer to parents, specifically dads, who find themselves, you know, with one of these. Didn’t ask for it, wouldn’t have expected it, not prepared type of situations like, you’ve described you and Chris Hart.

Hugh Hempel: I guess the first thing I would say is I, think there’s a conscious decision if you’re faced with a situation like that, whether it’s a very near term fatal prognosis, like what Chris and I found, or even if it’s a longer term sort of quality of life questions. I think the first thing to consciously decide about is a decision whether to sort of tilt at windmills. Go fight the fight, go do the battle, which is the choice that Chris and I made. Or alternatively, focus your attention specifically on spending time with your child. Particularly in our case. Those can be mutually exclusive decisions. And I’m not here to say. I guess my advice is, I’m not here to say that either is the right choice for me. Not moving forward in that context. Not fighting the fight, not going to war. For me, that was a form of therapy. I mean, it was a sense of empowerment in a moment where you feel unempowered. that kind of a diagnosis takes the wind out of your sails and makes you feel impotent, makes you feel like you are out of control, that, that you can’t do something. And so my natural inclination, my wife’s natural inclination was to try and do something, even if it was a futile effort, because to not do that was just not an option, for me, but that’s only speaking for myself. And like I said, I would respect anyone who chose the alternative.

David Hirsch: Yeah, well, thanks for the transparency on that. I guess you have to choose. Thinking about the future, not knowing what’s going to transpire. You don’t want to look back and think, coulda, woulda, shoulda, right. Either direction. And, you know, with the benefit of hindsight, like you said, six years since the girls have passed, you know, that you’re whole with the decision that you, you and Chris made, fighting the fight, like you said, it’s not the path that everybody would choose. But, you know, be conscious or intentional about the path that you’re chewing. So you don’t look back and say, coulda, woulda, shoulda. So thank you for that.

Hugh Hempel: I didn’t realize at the time, I mean, I was just a, papa bear and my wife was truly the mama bear of the story, trying to do something for my children specifically. But what has happened subsequently is I realized that my children’s legacy is my wife and Chris. And my decision to pursue this because what’s happened is it’s opened the doors to so many other things and so many children got treated using the

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Hugh Hempel: same protocol that we created for Addie and Cassie, many of whom I’ve met and are leading decent lives and way past their, you know, their prognostic outcome when they were diagnosed m in some cases 15 years ago. And so for me, it’s not how I planned it, but my work at N1C right now is essentially an extension of the twins legacy for me. And it transcends their specific disease, it transcends many things. And so I’m grateful that they gave me that path to pursue because it is my why it is what I’m super passionate about.

David Hirsch: Yeah, well, you know that now. You wouldn’t have known it then. Simon Sinek, you know why it’s a, calling, right? It turned out to be your calling. And, you know, it’s a pretty big deal. So thank you again for sharing.

David Hughemple is part of the Special Fathers Network mentoring program

Is there anything else you’d like to say before we wrap up?

Hugh Hempel: No, I just like to thank you for taking the time to put this together and I’m grateful for the chance to talk about it. It’s. It’s therapeutic in and of itself just to have this conversation. I look forward to an ongoing friendship with you and, any way I can help others. I’m more than happy to mentor or coach or just be a, an ear to someone who wants maybe going through a similar thing or even a not so similar thing. Who wants to chat? I’m always happy to have a quick conversation or an email thread or a text message or whatever. So I, assume that, my coordinates will be available on the podcast. But I’m, It’s part of my calling is to. Is to help others in that context, so. Always available.

David Hirsch: Well, we’re thrilled to have you as part of the network. Thank you. Let’s give a special shout out to our mutual friends and fellow SFN mentor fathers John Crawley and Mazi Kihobadi for helping connect us.

Hugh Hempel: Yeah, agreed. Thank you to both of them.

David Hirsch: If somebody wants to learn about your work, contact Hugh. What’s the best way to do so.

Hugh Hempel: Hugh, the Addie and Cassie Fund website is a good place to sort of learn a little bit more. I think my contact coordinates are on that website, but, it’s pretty simple. Hughemplefamily.com is my email address, just like it sounds. That’s definitely the best way to reach me and I’m happy to, happy to talk to any and all.

David Hirsch: I’ll be sure to include that and some other links that I’ve identified in the show, notes, and I’ll make it as easy as possible for somebody to follow up with you. Hugh, thank you for your time and many insights. As a reminder, Hugh is just one of the dads who’s part of the Special Fathers Network, a mentoring program for fathers raising a child with special needs. If you’d like to be a mentor father or are seeking advice from a mentor father with a similar situation to your own, Please go to 21st centurydads.org thank you for listening to the latest episode of the Special Fathers Network Dad to Dad Podcast. I hope you enjoyed the conversation as much as I did. As you probably know, the 21st Century Dads foundation is a 501c3 not for profit organization, which means we need your help to keep our content free to all concerned. Would you please consider making a tax deductible contribution? I would really appreciate your support, Hugh. Thanks again.

Hugh Hempel: Thank you, David.

David Hirsch: Dad to the dad. You’re not on your own.

Hugh Hempel: We walk this road together, hard and home.

David Hirsch: And thank you for listening to the Special Fathers Network Dad to Dad Podcast. The Special Fathers Network is a dad to dad mentoring program for fathers raising children with special needs. Through our personalized matching process, new fathers with special needs children match up with mentor fathers in a similar situation. It’s a great way for dads to support other dads. To find out more, go to 21st.

David Hirsch: Centurydads.Org and if you’re a dad, looking for help or would like to offer help, we would be honored to have you join our closed Facebook group. Please go to Facebook facebook.com groups and search dad to dad. Lastly, we’re always looking to share interesting stories. If you’d like to share your story or know of a compelling story, please send an email to david@21stCenturyDads.org the dad.

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David Hirsch: To dad Podcast theme was written and performed by Shane Madden. The show was produced by me, Tom Couch. Tune in again next week for another intriguing conversation on the Special Fathers Network Dad to Dad Podcast. Through every season, in every stride, great dads are present 2, 4, 7, 3, 6, 5.

David Hirsch: 2, 4, 7, 3′, 6, 5.

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