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Because We Are Strong - INTERVIEW: Orah Lasko & Hao Fountain Syndrome

INTERVIEW: Orah Lasko & Hao Fountain Syndrome

11/20/20 • 41 min

Because We Are Strong

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

The CUBE and OOLER systems are two really cool gadgets that fit over the top of your mattress and use water to control the temperature of your bed. Right now Chili is offering my audience a really great deal. When you go to Chilisleep.com/findyourrare20, you can get 20% off the CUBE all sleep systems with findyourrare20. I hope you’ll check out Chili and see why I love their products so much.

Support the show

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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

The CUBE and OOLER systems are two really cool gadgets that fit over the top of your mattress and use water to control the temperature of your bed. Right now Chili is offering my audience a really great deal. When you go to Chilisleep.com/findyourrare20, you can get 20% off the CUBE all sleep systems with findyourrare20. I hope you’ll check out Chili and see why I love their products so much.

Support the show

Previous Episode

undefined - INTERVIEW: Effie Parks & Once Upon A Gene

INTERVIEW: Effie Parks & Once Upon A Gene

We are back with another episode of Because we Are strong. Today we are sitting down with Effie, the mother of a rare disease warrior and a woman determined to make a difference. Effie has created her own podcast called Once upon a Gene, in honor of her son Ford who was born with a rare genetic disease called CTNNB1 syndrome. Many genetic syndromes such as CTNNB1 syndrome vary in their severity. There are only about 200 known people in the world who have CTNNB1 syndrome. We could not be more excited to bring the mother of one of them on our podcast to tell you all about it. We all know mommas know best!
Effie Parks was born in the magical land of Montana, where she was raised with her 12 loving siblings. After moving to Washington and marrying her husband, they were blessed with the birth of their son, Ford Canon Parks. When she learned that Ford had been born with an extremely rare genetic condition – CTNNB1 syndrome – she dove into the world of advocacy. Now, she is the host of her own podcast, Once Upon a Gene, where she speaks to others about their journey through life with a rare disease.
_______________________________
Connect with Effie:

https://www.instagram.com/onceuponagene.podcast/

https://twitter.com/OnceUponAGene

https://www.facebook.com/groups/1877643259173346

https://www.linkedin.com/in/effie-parks-741013164/

https://effieparks.com/

The CUBE and OOLER systems are two really cool gadgets that fit over the top of your mattress and use water to control the temperature of your bed. Right now Chili is offering my audience a really great deal. When you go to Chilisleep.com/findyourrare20, you can get 20% off the CUBE all sleep systems with findyourrare20. I hope you’ll check out Chili and see why I love their products so much.

Support the show

Next Episode

undefined - INTERVIEW: Erin Noon Kay & Claiming Disabilities

INTERVIEW: Erin Noon Kay & Claiming Disabilities

DISABILITY IS A BADGE OF HONOR.
Creating Strength and Empowerment for People with Disabilities
Erin Noon Kay is the CEO & Founder of Claiming Disability Inc. Erin identifies as a "fierce disabled entrepreneurial woman," with Cerebral Palsy. She uses a walker and wheelchair occasionally, but she believes it's "OK" to look disabled and is working hard to bring representation for disability in film and everyday culture through media projects and disability-related content. She believes "disabled," is NOT is a bad word, but a badge of honor, a beautiful community, a culture. She has worked in the non-profit, governmental, and business sectors for over 10 years.

The original concept of Claiming Disability, Inc. started as a collective partnership with her friend, Mollie Miller, who also has Cerebral Palsy and is a strong disabilities advocate. Although, Mollie has moved on the message of empowerment and acceptance in the disabled community continues to strive and grow.

Now, Claiming Disability, Inc is connected to over 3,000 disability advocates from around the world, including Jim Lebrecht and Nicole Newnhawn, the Directors/Executive Producers of Crip Camp. A groundbreaking summer camp galvanizes a group of teens with disabilities to help build a movement, forging a new path toward greater equality.

Claiming Disability Inc wants to spread our messages of empowerment and compassion. We believe that a single action can make a difference in the community, and that shared experiences can greatly impact inclusion. Through advocacy and outreach activities, our team and our community of supporters work to embrace diversity and disability as an asset toward the greater good.
CLAIMING DISABILITY INC AT A GLANCE
Helping people find strength and courage to celebrate disability
_______________________________________________________________
Connect with Erin
Instagram
@claiming_disability_inc
Facebook
Website: https://www.claimingdisabilityinc.org/

Podcast: https://open.spotify.com/show/2Yn4fadpSRth3tRTRkiLaH

Merch: https://teespring.com/stores/claiming-disability-ink-2?page=1

Films: https://www.youtube.com/watch?v=0U2uijKb5J8&ab_channel=EastersealsDisabilityFilmChallenge

Sponsored Partnerships: https://thatshandi.co/
168Lyfwtjm06sEdvaCHP

The CUBE and OOLER systems are two really cool gadgets that fit over the top of your mattress and use water to control the temperature of your bed. Right now Chili is offering my audience a really great deal. When you go to Chilisleep.com/findyourrare20, you can get 20% off the CUBE all sleep systems with findyourrare20. I hope you’ll check out Chili and see why I love their products so much.

Support the show

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