Because We Are Strong

INTERVIEW: Orah Lasko & Hao Fountain Syndrome

November 20, 2020 Kristine Hoestermann / Guest: Orah Lasko Season 1 Episode 17
Because We Are Strong
INTERVIEW: Orah Lasko & Hao Fountain Syndrome
Chapters
Because We Are Strong
INTERVIEW: Orah Lasko & Hao Fountain Syndrome
Nov 20, 2020 Season 1 Episode 17
Kristine Hoestermann / Guest: Orah Lasko

Hey peeps! It was just Kristine this episode and I am back this week again hosting solo but we have another great episode for you today as I have the pleasure of sitting down with Orah Lasko who is the mother of Luke; Luke has a rare genetic disorder syndrome called Hao Fountain syndrome. As with to many of these rare genetic disorders Jake is among the ultra-rare with only 73 older cases known in the world. As you all know there is so much that goes into being a rare family so let's dive right in and hear from someone who knows best

I advocated for my son for over nine months before he finally got his rare disease diagnosis. I want to create awareness of his disease but also teach people how important it is to be your child’s advocate and always push for answers.

Connect With Orah:
@orahlasko and also the USP7

(Hao-Fountan Syndrome) foundation website usp7.org

 Think of the people who are sharing their health story on social media or a blog, leading a Facebook group, hosting a podcast, working with nonprofits, collaborating with healthcare, and more!
Head to wegohealth.com/backslash awards to learn more and nominate today!

 That's why the BC Schizophrenia Society has launched a brand new podcast, called Look Again, Mental Illness Re-examined. Host Faydra Aldridge talks to doctors, families, and people with lived experience about how to recognize mental illness, and the specific treatments that can help. Check it out. They'll really challenge you to“look again” at what you think you know about mental illness. 

Support the show (https://www.patron.com/findyourrare)

Show Notes

Hey peeps! It was just Kristine this episode and I am back this week again hosting solo but we have another great episode for you today as I have the pleasure of sitting down with Orah Lasko who is the mother of Luke; Luke has a rare genetic disorder syndrome called Hao Fountain syndrome. As with to many of these rare genetic disorders Jake is among the ultra-rare with only 73 older cases known in the world. As you all know there is so much that goes into being a rare family so let's dive right in and hear from someone who knows best

I advocated for my son for over nine months before he finally got his rare disease diagnosis. I want to create awareness of his disease but also teach people how important it is to be your child’s advocate and always push for answers.

Connect With Orah:
@orahlasko and also the USP7

(Hao-Fountan Syndrome) foundation website usp7.org

 Think of the people who are sharing their health story on social media or a blog, leading a Facebook group, hosting a podcast, working with nonprofits, collaborating with healthcare, and more!
Head to wegohealth.com/backslash awards to learn more and nominate today!

 That's why the BC Schizophrenia Society has launched a brand new podcast, called Look Again, Mental Illness Re-examined. Host Faydra Aldridge talks to doctors, families, and people with lived experience about how to recognize mental illness, and the specific treatments that can help. Check it out. They'll really challenge you to“look again” at what you think you know about mental illness. 

Support the show (https://www.patron.com/findyourrare)