Neena Nizar's guest appearances

Neena Nizar

Once Upon A Gene

Wait, How Do You Spell That? A Rare Disease Podcast

Kyle Bryant

Taylor Kane

Blyth Lord

David Ross

Patrick James

David Fajgenbaum

Adam Johnson

Sarah Putt

James Doyle

Lisa Greenwald

Rob Long

James Lynch

Melanie Dimmitt

Ethan Perlstein

Nathan Peck

OwlTail

In this episode, Ilana has a conversation with Jansen's Foundation president and founder Neena Nizar. Jansen's Disease is one one of the rarest disorders in the world, with Neena reporting only 10 known cases worldwide when she started her foundation in 2017. This interview was recorded in February 2020 at NIH Rare Disease Day. Since then, Neena reports that the COVID-19 pandemic has understandably slowed some of the Jansen's Foundation's work, but that they are moving things back on track soon.  Read about Neena and her family in the New York Times, here: https://www.nytimes.com/2020/07/07/health/rare-diseases.html

In this episode, Ilana has a conversation with Jansen's Foundation president and founder Neena Nizar. Jansen's Disease is one one of the rarest disorders in the world, with Neena reporting only 10 known cases worldwide when she started her foundation in 2017. This interview was recorded in February 2020 at NIH Rare Disease Day. Since then, Neena reports that the COVID-19 pandemic has understandably slowed some of the Jansen's Foundation's work, but that they are moving things back on track soon. Read about Neena and her family in the New York Times, here: <a href="https://www.nytimes.com/2020/07/07/health/rare-diseases.html" rel="nofollow" target="_blank">https://www.nytimes.com/2020/07/07/health/rare-diseases.html</a>

Rarest of the Rare: Neena Nizar and the Jansen's Foundation

ONCE UPON A GENE - EPISODE 019Neena Nizar and the Jansen's FoundationMy guest today was misdiagnosed for decades and now she shares a diagnosis with her two young boys. They were all born with an extremely rare disease called Jansen's Metaphyseal Chondrodysplasia. With this disease, the body loses its ability to form bone properly and numerous surgeries are often required to correct the bones. Neena Nizar moved her family from Dubai to America to get the help they needed for this disease. She is a huge advocate, creating the Jansen's Foundation and working with doctors and researchers to find a cure for this disease. She's working tirelessly to give hope to so many in the rare disease community. EPISODE HIGHLIGHTSTell me about your story of diagnosis with Jansen's. I didn't know I had Jansen's for 32 years. Before I got married or had children, I was born and raised in Dubai in the Middle East. I was born in the 80's before there was Google and before there were experts or rare diseases on the radar. I was misdiagnosed several times as a child with Polio and Rickett's and all sorts of other bizarre conditions. It was hard for my parents to know what was wrong with me. They did know I didn't have any of the diagnosis we were being given, but lacking the information, they didn't know what else it could be. Not knowing and just going by what the doctors said we had to do, that's what we did. Is your experience as someone with a disability, the same one as your kids, a gift that you can give them perspective?I feel like it's a double-edge sword. Yes, I have real empathy for my children because I've been through a similar situation, I've been through so many surgeries as a child, I've seen doctors around the world. I have to really understand that my children are not me and I am not them and I need to understand that as I parent, some of the reactions my boys have are not always reactions that I would have as a child. I have to keep constantly reminding myself that they're their own individuals and even though they share the same condition, they experience things in a different world and environment. I respect that, I have to learn to understand that and try not to impose my character on them, but allow them to blossom as individuals, and also independent from one another. I don't think it's easier to parent them because I have this disease as well. I think it's harder in ways and easier in ways. We don't have a treatment for them and we're in the same boat as I was 30 years ago, so these are the hard realities I have to accept, face and learn from– and then also change.Are all 30 Jansen's patients in the patient research?There are 30 people in the world since the time of the disease's discovery, but right now there are only 10 people with this disease. We're hoping that all of them will be in the trial. CONNECT WITH NEENA NIZARThe Jansen’s Foundation Website: https://neena-nizar.squarespace.com/Email: info@thejansensfoundation.orgFacebook / Instagram: @thejansensfoundationTwitter: @neenanizarTUNE INTO THE ONCE UPON A GENE PODCASTSpotify Apple PodcastsStitcher OvercastCONNECT WITH EFFIE PARKSWebsiteTwitter Instagram

ONCE UPON A GENE - EPISODE 019Neena Nizar and the Jansen's FoundationMy guest today was misdiagnosed for decades and now she shares a diagnosis with her two young boys. They were all born with an extremely rare disease called Jansen's Metaphyseal Chondrodysplasia. With this disease, the body loses its ability to form bone properly and numerous surgeries are often required to correct the bones. Neena Nizar moved her family from Dubai to America to get the help they needed for this disease. She is a huge advocate, creating the Jansen's Foundation and working with doctors and researchers to find a cure for this disease. She's working tirelessly to give hope to so many in the rare disease community. EPISODE HIGHLIGHTSTell me about your story of diagnosis with Jansen's. I didn't know I had Jansen's for 32 years. Before I got married or had children, I was born and raised in Dubai in the Middle East. I was born in the 80's before there was Google and before there were experts or rare diseases on the radar. I was misdiagnosed several times as a child with Polio and Rickett's and all sorts of other bizarre conditions. It was hard for my parents to know what was wrong with me. They did know I didn't have any of the diagnosis we were being given, but lacking the information, they didn't know what else it could be. Not knowing and just going by what the doctors said we had to do, that's what we did. Is your experience as someone with a disability, the same one as your kids, a gift that you can give them perspective?I feel like it's a double-edge sword. Yes, I have real empathy for my children because I've been through a similar situation, I've been through so many surgeries as a child, I've seen doctors around the world. I have to really understand that my children are not me and I am not them and I need to understand that as I parent, some of the reactions my boys have are not always reactions that I would have as a child. I have to keep constantly reminding myself that they're their own individuals and even though they share the same condition, they experience things in a different world and environment. I respect that, I have to learn to understand that and try not to impose my character on them, but allow them to blossom as individuals, and also independent from one another. I don't think it's easier to parent them because I have this disease as well. I think it's harder in ways and easier in ways. We don't have a treatment for them and we're in the same boat as I was 30 years ago, so these are the hard realities I have to accept, face and learn from– and then also change.Are all 30 Jansen's patients in the patient research?There are 30 people in the world since the time of the disease's discovery, but right now there are only 10 people with this disease. We're hoping that all of them will be in the trial. CONNECT WITH NEENA NIZARThe Jansen’s Foundation Website: <a href="https://neena-nizar.squarespace.com/" rel="nofollow" target="_blank">https://neena-nizar.squarespace.com/</a>Email: <a href="mailto:info@thejansensfoundation.org">info@thejansensfoundation.org</a>Facebook / Instagram: @thejansensfoundationTwitter: @neenanizarTUNE INTO THE ONCE UPON A GENE PODCAST<a href="https://open.spotify.com/show/5Htr9lt5vXGG3ac6enxLQ7" rel="nofollow" target="_blank">Spotify</a><a href="https://podcasts.apple.com/us/podcast/once-upon-a-gene/id1485249347" rel="nofollow" target="_blank"> Apple Podcasts</a><a href="https://www.stitcher.com/podcast/once-upon-a-gene" rel="nofollow" target="_blank">Stitcher</a><a href="https://overcast.fm/itunes1485249347/once-upon-a-gene" rel="nofollow" target="_blank"> Overcast</a>CONNECT WITH EFFIE PARKS<a href="https://effieparks.com/" rel="nofollow" target="_blank">Website</a><a href="https://twitter.com/OnceUponAGene" rel="nofollow" target="_blank">Twitter</a><a href="https://www.instagram.com/onceuponagene.podcast/?hl=en" rel="nofollow" target="_blank"> Instagram</a>

Neena Nizar and the Jansen's Foundation