Menkes Syndrome's guest appearances

Menkes Syndrome

DADICATED.COM - empowering Dads

R is for Rare

Daniel DeFabio

John Gray

Rory Sutherland

Jason Goldberg

John Rosemond

Arel Moodie

Warren Farrell

James Lawrence

Rorke Denver

Emily Hall

Evan Harris

Jason Reid

Robert Glazer

Steve Biddulph

Emily Parks

OwlTail

This week's interview is with Daniel DeFabio, whose son had Menkes Syndrome (aka Kinky Hair Syndrome). Menkes is a genetic disorder that affects the body's metabolism of copper, which can impact basic functions and life span as well. Daniel works at Global Genes in community engagement, and helped create The Disorder Channel and Disorder: The Rare Disease Film Festival. He and I discussed regrets with parenting, how his son's life was different because of Menkes, the impact of The Rare Disease Film Festival, and much more!Be sure to subscribe to R is for Rare on Apple Podcasts, Spotify, or wherever you get your podcasts! And follow me on Instagram @risforrarepodcast!The Disorder Channel is free on Roku and Fire TV devices. www.thedisorderchannel.comFor more on Global Genes programs and events: www.globalgenes.orgRare Disease Film Festival Website - https://www.rarediseasefilmfestival.com/Follow Daniel DeFabio on Facebook - https://www.facebook.com/rarediseasefilmfestivalFollow Daniel DeFabio on Instagram - https://www.instagram.com/disorderrarediseasefilms/Disorder: The Rare Disease Film Festival on Linkedin - https://www.linkedin.com/company/disorder-the-rare-disease-film-festival/--- This episode is sponsored by · Anchor: The easiest way to make a podcast.  https://anchor.fm/app--- Send in a voice message: https://anchor.fm/annie-watson/message

This week's interview is with Daniel DeFabio, whose son had Menkes Syndrome (aka Kinky Hair Syndrome). Menkes is a genetic disorder that affects the body's metabolism of copper, which can impact basic functions and life span as well. Daniel works at Global Genes in community engagement, and helped create The Disorder Channel and Disorder: The Rare Disease Film Festival. He and I discussed regrets with parenting, how his son's life was different because of Menkes, the impact of The Rare Disease Film Festival, and much more! Be sure to subscribe to R is for Rare on Apple Podcasts, Spotify, or wherever you get your podcasts! And follow me on Instagram @risforrarepodcast! The Disorder Channel is free on Roku and Fire TV devices. <a href="http://www.thedisorderchannel.com" rel="nofollow" target="_blank">www.thedisorderchannel.com</a> For more on Global Genes programs and events: <a href="http://www.globalgenes.org" rel="nofollow" target="_blank">www.globalgenes.org</a> Rare Disease Film Festival Website - <a href="https://www.rarediseasefilmfestival.com/" rel="nofollow" target="_blank">https://www.rarediseasefilmfestival.com/</a> Follow Daniel DeFabio on Facebook - <a href="https://www.facebook.com/rarediseasefilmfestival" rel="nofollow" target="_blank">https://www.facebook.com/rarediseasefilmfestival</a> Follow Daniel DeFabio on Instagram - <a href="https://www.instagram.com/disorderrarediseasefilms/" rel="nofollow" target="_blank">https://www.instagram.com/disorderrarediseasefilms/</a> Disorder: The Rare Disease Film Festival on Linkedin - <a href="https://www.linkedin.com/company/disorder-the-rare-disease-film-festival/" rel="nofollow" target="_blank">https://www.linkedin.com/company/disorder-the-rare-disease-film-festival/</a> --- This episode is sponsored by · Anchor: The easiest way to make a podcast. <a href="https://anchor.fm/app" rel="nofollow" target="_blank">https://anchor.fm/app</a> --- Send in a voice message: <a href="https://anchor.fm/annie-watson/message" rel="nofollow" target="_blank">https://anchor.fm/annie-watson/message</a>

23 - Menkes Syndrome ft. Daniel DeFabio

“You may have a shorter life with your child but you still have a life with your child and some of this will be happy.” Daniel DeFabio on DADicated.com Daniel DeFabio is married and a father of two boys, Alex and Lucas. Sadly Lucas quite recently passed away at the age of 11.5 due to Menkes Syndrome, a rare disease he had been diagnosed with at the age of 1. Daniel shares how he adjusted his expectations of what raising a child might look like at the point of the diagnosis, his views and experiences as a rare dad, how he dealt with the loss, how the Lucas’s condition impacted the family and what helped him and his views on fathering a child that he knew he would lose. The most powerful takeaways for me as a dad where:  Parenting advice is almost always future orientated. Live in the moment, be ready to change your own expectations. When dealing with rare disease parents give an extra effort to include them.  Hope you’ll like it, thanks for listening. To book Philipp as a keynote speaker on empowering dads and building successful families reach out via www.dadicated.com. GUEST (Daniel DeFabio):  LinkedIn: https://www.linkedin.com/in/daniel-defabio-79b3a61/  Philipp Hartmann (host):  Philipp Hartmann: www.philipp-hartmann.de Philipp’s LinkedIn: https://www.linkedin.com/in/philipphartmann2  Weblinks from this episode:  NYT article Philipp refers to (“How do you parent without a future, knowing that you will lose your child, bit by bit?): https://www.nytimes.com/2011/10/16/opinion/sunday/notes-from-a-dragon-mom.html  Disorder: The Rare Disease Film Festival:  Website: https://www.rarediseasefilmfestival.com/ The Disorder Channel: www.thedisordercollection.com facebook: https://www.facebook.com/rarediseasefilmfestival instagram: https://www.instagram.com/disorderrarediseasefilms/ LinkedIn: https://www.linkedin.com/company/disorder-the-rare-disease-film-festival/--- Send in a voice message: https://podcasters.spotify.com/pod/show/dadicateddotcom/message

“You may have a shorter life with your child but you still have a life with your child and some of this will be happy.” Daniel DeFabio on <a href="http://DADicated.com" rel="nofollow" target="_blank">DADicated.com</a> Daniel DeFabio is married and a father of two boys, Alex and Lucas. Sadly Lucas quite recently passed away at the age of 11.5 due to Menkes Syndrome, a rare disease he had been diagnosed with at the age of 1. Daniel shares how he adjusted his expectations of what raising a child might look like at the point of the diagnosis, his views and experiences as a rare dad, how he dealt with the loss, how the Lucas’s condition impacted the family and what helped him and his views on fathering a child that he knew he would lose. The most powerful takeaways for me as a dad where: <ol> <li>Parenting advice is almost always future orientated.</li> <li>Live in the moment, be ready to change your own expectations.</li> <li>When dealing with rare disease parents give an extra effort to include them.</li> </ol> Hope you’ll like it, thanks for listening. To book Philipp as a keynote speaker on empowering dads and building successful families reach out via <a href="http://www.dadicated.com/" rel="nofollow" target="_blank">www.dadicated.com</a>. GUEST (Daniel DeFabio): <ul> <li>LinkedIn: <a href="https://www.linkedin.com/in/daniel-defabio-79b3a61/" rel="nofollow" target="_blank">https://www.linkedin.com/in/daniel-defabio-79b3a61/</a></li> </ul> Philipp Hartmann (host): <ul> <li>Philipp Hartmann:<a href="http://www.philipp-hartmann.de/" rel="nofollow" target="_blank"> www.philipp-hartmann.de</a></li> <li>Philipp’s LinkedIn:<a href="https://www.linkedin.com/in/philipphartmann2" rel="nofollow" target="_blank"> https://www.linkedin.com/in/philipphartmann2</a></li> </ul> Weblinks from this episode: <ul> <li>NYT article Philipp refers to (“How do you parent without a future, knowing that you will lose your child, bit by bit?): <a href="https://www.nytimes.com/2011/10/16/opinion/sunday/notes-from-a-dragon-mom.html" rel="nofollow" target="_blank">https://www.nytimes.com/2011/10/16/opinion/sunday/notes-from-a-dragon-mom.html</a></li> </ul> Disorder: The Rare Disease Film Festival: <ul> <li>Website: <a href="https://www.rarediseasefilmfestival.com/" rel="nofollow" target="_blank">https://www.rarediseasefilmfestival.com/</a></li> <li>The Disorder Channel: <a href="http://www.thedisordercollection.com/" rel="nofollow" target="_blank">www.thedisordercollection.com</a></li> <li>facebook: <a href="https://www.facebook.com/rarediseasefilmfestival" rel="nofollow" target="_blank">https://www.facebook.com/rarediseasefilmfestival</a></li> <li>instagram: <a href="https://www.instagram.com/disorderrarediseasefilms/" rel="nofollow" target="_blank">https://www.instagram.com/disorderrarediseasefilms/</a></li> <li>LinkedIn: <a href="https://www.linkedin.com/company/disorder-the-rare-disease-film-festival/" rel="nofollow" target="_blank">https://www.linkedin.com/company/disorder-the-rare-disease-film-festival/</a></li></ul>--- Send in a voice message: <a href="https://podcasters.spotify.com/pod/show/dadicateddotcom/message" rel="nofollow" target="_blank">https://podcasters.spotify.com/pod/show/dadicateddotcom/message</a>

55 Losing your child to a rare disease. Daniel DeFabio on Menkes Syndrome