Jennifer Siedman's guest appearances

Jennifer Siedman

Two Rare Mama Bears

Who Lives Like This?!

Once Upon A Gene

Jessica Patay

Cristol O'Loughlin

Nemaline Myopathy

Brendan Sullivan

Kyle Bryant

Liz Morris

Blyth Lord

David Ross

Amy Silverman

Patrick James

David Fajgenbaum

Bonni Goldstein

Adam Johnson

Susan McConnell

Sarah Putt

OwlTail

ONCE UPON A GENE - EPISODE 100A Rare Collection- Because of You with Kyle Bryant, Jennifer Siedman, Liz Morris, and Ashley Fortney PointThere's power in storytelling- for the listener and the storyteller. A Rare Collection is a monthly series featuring people from the rare disease community, sharing a story with a common theme. Kyle Bryant, Jennifer Sideman, Liz Morris, and Ashley Fortney Point share stories of rare disease.EPISODE HIGHLIGHTSKyle Bryant, Living with Friedreich’s AtaxiaKyle was diagnosed with Friedreich’s Ataxia at age 17. It's a disease that affects balance and coordination and has symptoms of scoliosis, vision loss, hearing loss and life-shortening heart complications. At the time he was diagnosed, he ignored that his future would be much different than what he'd imagined. After a few years, he wanted to take a cross-country bike ride. Kyle reads a page from his book about how he convinced his parents to join him.Jennifer Siedman, Mother to BenJennifer loved a little boy with a rare disease called Sanfilippo Syndrome. That boy graced this Earth for 17 years with a big lion roar of a laugh and a gentle heart. He loved farms, tractors, baseball and chocolate donuts. His quiet determination convinced a researcher to pursue a treatment and because of it, there are other children today with Sanfilippo Syndrome who's future might look different than his. Jennifer knows who she is today because she was Ben's mother. Jennifer shares a story of her mother-in-law who, through her own determination, modeled the skills she would need to be the best mother and advocate she could be to Ben. Liz Morris, Mother to ColsonThe Pacific Northwest is abundantly beautiful. Seattle's true appeal is in it's wild spaces. Carkeek Park in northern Seattle is one of Liz's favorites with organic healing powers she needs. Trails lead through the lush woods, there's an expansive shoreline with built-in driftwood seating and open green hills overlooking the sea and mountains. Liz and her husband sat on the beach at Carkeek Park on a hazy August evening in 2016 and talked of their future. They talked of the future they wanted for their future child, which Liz was six months pregnant with. Colson was born in October 2016. He was impacted by mitochondrial disease, a genetic disorder that compromised his body's ability to turn food into energy. Liz shares a story of living with enough.Ashley Fortney, Mother to DavisIn 2014, Ashley welcomed her son Davis into the world after a difficult pregnancy filled with many hospitalizations and much worry. From the start, the doctors thought there might be something different about Davis. Davis was diagnosed with Koolen-de Vries syndrome at age 7, but he's continued to grow, learn and prove that nothing can stop him. Ashley shares all the ways that Davis has helped the family grow and find support from others in the community and all the ways he makes the world a better place.TUNE INTO THE ONCE UPON A GENE PODCASTSpotifyhttps://open.spotify.com/show/5Htr9lt5vXGG3ac6enxLQ7Apple Podcastshttps://podcasts.apple.com/us/podcast/once-upon-a-gene/id1485249347Stitcherhttps://www.stitcher.com/podcast/once-upon-a-geneOvercasthttps://overcast.fm/itunes1485249347/once-upon-a-geneCONNECT WITH EFFIE PARKSWebsitehttps://effieparks.com/Twitterhttps://twitter.com/OnceUponAGeneInstagramhttps://www.instagram.com/onceuponagene.podcast/?hl=enBuilt Ford Tough Facebook Grouphttps://www.facebook.com/groups/1877643259173346/

ONCE UPON A GENE - EPISODE 100A Rare Collection- Because of You with Kyle Bryant, Jennifer Siedman, Liz Morris, and Ashley Fortney PointThere's power in storytelling- for the listener and the storyteller. A Rare Collection is a monthly series featuring people from the rare disease community, sharing a story with a common theme. Kyle Bryant, Jennifer Sideman, Liz Morris, and Ashley Fortney Point share stories of rare disease. EPISODE HIGHLIGHTS Kyle Bryant, Living with Friedreich’s AtaxiaKyle was diagnosed with Friedreich’s Ataxia at age 17. It's a disease that affects balance and coordination and has symptoms of scoliosis, vision loss, hearing loss and life-shortening heart complications. At the time he was diagnosed, he ignored that his future would be much different than what he'd imagined. After a few years, he wanted to take a cross-country bike ride. Kyle reads a page from his book about how he convinced his parents to join him. Jennifer Siedman, Mother to BenJennifer loved a little boy with a rare disease called Sanfilippo Syndrome. That boy graced this Earth for 17 years with a big lion roar of a laugh and a gentle heart. He loved farms, tractors, baseball and chocolate donuts. His quiet determination convinced a researcher to pursue a treatment and because of it, there are other children today with Sanfilippo Syndrome who's future might look different than his. Jennifer knows who she is today because she was Ben's mother. Jennifer shares a story of her mother-in-law who, through her own determination, modeled the skills she would need to be the best mother and advocate she could be to Ben.  Liz Morris, Mother to ColsonThe Pacific Northwest is abundantly beautiful. Seattle's true appeal is in it's wild spaces. Carkeek Park in northern Seattle is one of Liz's favorites with organic healing powers she needs. Trails lead through the lush woods, there's an expansive shoreline with built-in driftwood seating and open green hills overlooking the sea and mountains. Liz and her husband sat on the beach at Carkeek Park on a hazy August evening in 2016 and talked of their future. They talked of the future they wanted for their future child, which Liz was six months pregnant with. Colson was born in October 2016. He was impacted by mitochondrial disease, a genetic disorder that compromised his body's ability to turn food into energy. Liz shares a story of living with enough. Ashley Fortney, Mother to DavisIn 2014, Ashley welcomed her son Davis into the world after a difficult pregnancy filled with many hospitalizations and much worry. From the start, the doctors thought there might be something different about Davis. Davis was diagnosed with Koolen-de Vries syndrome at age 7, but he's continued to grow, learn and prove that nothing can stop him. Ashley shares all the ways that Davis has helped the family grow and find support from others in the community and all the ways he makes the world a better place. TUNE INTO THE ONCE UPON A GENE PODCAST<a href="https://open.spotify.com/show/5Htr9lt5vXGG3ac6enxLQ7" rel="nofollow" target="_blank">Spotify</a><a href="https://open.spotify.com/show/5Htr9lt5vXGG3ac6enxLQ7" rel="nofollow" target="_blank">https://open.spotify.com/show/5Htr9lt5vXGG3ac6enxLQ7</a><a href="https://podcasts.apple.com/us/podcast/once-upon-a-gene/id1485249347" rel="nofollow" target="_blank">Apple Podcasts</a><a href="https://podcasts.apple.com/us/podcast/once-upon-a-gene/id1485249347" rel="nofollow" target="_blank">https://podcasts.apple.com/us/podcast/once-upon-a-gene/id1485249347</a><a href="https://www.stitcher.com/podcast/once-upon-a-gene" rel="nofollow" target="_blank">Stitcher</a><a href="https://www.stitcher.com/podcast/once-upon-a-gene" rel="nofollow" target="_blank">https://www.stitcher.com/podcast/once-upon-a-gene</a><a href="https://overcast.fm/itunes1485249347/once-upon-a-gene" rel="nofollow" target="_blank">Overcast</a><a href="https://overcast.fm/itunes1485249347/once-upon-a-gene" rel="nofollow" target="_blank">https://overcast.fm/itunes1485249347/once-upon-a-gene</a> CONNECT WITH EFFIE PARKS<a href="https://effieparks.com/" rel="nofollow" target="_blank">Website</a><a href="https://effieparks.com/" rel="nofollow" target="_blank">https://effieparks.com/</a><a href="https://twitter.com/OnceUponAGene" rel="nofollow" target="_blank">Twitter</a><a href="https://twitter.com/OnceUponAGene" rel="nofollow" target="_blank">https://twitter.com/OnceUponAGene</a><a href="https://www.instagram.com/onceuponagene.podcast/?hl=en" rel="nofollow" target="_blank">Instagram</a><a href="https://www.instagram.com/onceuponagene.podcast/?hl=en" rel="nofollow" target="_blank">https://www.instagram.com/onceuponagene.podcast/?hl=en</a><a href="https://www.facebook.com/groups/1877643259173346/" rel="nofollow" target="_blank">Built Ford Tough Facebook Group</a><a href="https://www.facebook.com/groups/1877643259173346/" rel="nofollow" target="_blank">https://www.facebook.com/groups/1877643259173346/</a>

A Rare Collection - Rare Disease Storytelling with Kyle Bryant, Jennifer Siedman, Liz Morris and Ashley Fortney Point

Jennifer Siedman, Patient Disease Outreach Coordinator at Courageous Parents Network, joins us to talk on the topic of: Anticipatory Grief - grief that occurs before death or grief that comes with feeling or confronting emotions in advance of an event (loved one’s birthday or anniversary of death).  Jennifer and her family know this all too well - in 2014 they lost their teenage son, Ben, to Sanfilippo Syndrome. Since that time, Jennifer has devoted herself to support, guide and strengthen families as they care for a seriously ill child. Jennifer welcomes families in similar situations to reach out to her at: jennifer@courageousparentsnetwork.org   Courageous Parents Network can be found online at: www.courageousparentsnetwork.org/Find Two Rare Mama Bears on Facebook, Instagram &amp; Twitter: 2raremamabears

Jennifer Siedman, Patient Disease Outreach Coordinator at Courageous Parents Network, joins us to talk on the topic of: Anticipatory Grief - grief that occurs before death or grief that comes with feeling or confronting emotions in advance of an event (loved one’s birthday or anniversary of death). Jennifer and her family know this all too well - in 2014 they lost their teenage son, Ben, to Sanfilippo Syndrome. Since that time, Jennifer has devoted herself to support, guide and strengthen families as they care for a seriously ill child. Jennifer welcomes families in similar situations to reach out to her at: jennifer@courageousparentsnetwork.org Courageous Parents Network can be found online at: <a href="http://www.courageousparentsnetwork.org/" rel="nofollow" target="_blank">www.courageousparentsnetwork.org/</a> Find Two Rare Mama Bears on Facebook, Instagram &amp; Twitter: 2raremamabears

045 - Anticipatory Grief, Jennifer Siedman - Courageous Parents Network

Blyth Taylor Lord

In this week's podcast, we had the pleasure of speaking with Jennifer Siedman and Blyth Taylor Lord about an amazing community called the Courageous Parents Network.The conversation was a deep one and touched on palliative care, bereavement, grief, friendship and sustenance through connection, but it was so profound and inspiring is is hard to convey its power in words. Anyone visiting here should just listen to it ...

In this week's podcast, we had the pleasure of speaking with Jennifer Siedman and Blyth Taylor Lord about an amazing community called the Courageous Parents Network. The conversation was a deep one and touched on palliative care, bereavement, grief, friendship and sustenance through connection, but it was so profound and inspiring is is hard to convey its power in words. Anyone visiting here should just listen to it ...

Jennifer Siedman, Blyth Taylor Lord and The Courageous Parents Network