A Mother's Crusade to Find a Cure for Her Son - Amber Freed, Founder and CEO, SLC6A1 Connect

Once Upon A Gene

English - August 20, 2020 11:00 - 42 minutes - ★★★★★ - 258 ratings
Parenting Kids & Family advocate caregiver disability genetherapy genetics inclusion parenting raredisease rarediseasepodcast raredisorder Homepage Download Apple Podcasts Google Podcasts Overcast Castro Pocket Casts RSS feed

Previous Episode: David Fajgenbaum - Chasing My Cure - A Doctor's Race to Turn Hope into Action

Next Episode: Effisode - Let Me Tell You About My Big Brother

A Mother’s Crusade to Find a Cure for Her Son - Amber Freed
Amber Freed is the mother of twins, Maxwell and Riley. At a year old, Maxwell was diagnosed with a disease too rare to have a formal name, referred to as SLC6A1. When Amber was told nothing could be done, she decided to fight. She left her career that day and shifted her focus towards a treatment. She's a leader in the rare disease community and is the founder of SLC6A1 Connect.

EPISODE HIGHLIGHTS
Give us a little background on the beginning of your journey as an advocate?
Tell us about your kids coming into the world and becoming a mom.
What started you on a mission to get answers about Maxwell's development?
What were the results of the genetic test?
Calling a scientist in Denmark was the beginning of your crusade. What has happened since then?
How much money have you raised so far?
What advice do you have for the listeners?

LINKS AND RESOURCES MENTIONED
SLC6A1 Connect https://slc6a1connect.org/
Donate https://slc6a1connect.org/donate-here/
Contact Amber [email protected]

TUNE INTO THE ONCE UPON A GENE PODCAST
Spotify
Apple Podcasts
Stitcher
Overcast

CONNECT WITH EFFIE PARKS
Website
https://effieparks.com/
Twitter
https://twitter.com/OnceUponAGene
Instagram
https://www.instagram.com/onceuponagene.podcast/?hl=en
Built Ford Tough Facebook Group
https://www.facebook.com/groups/1877643259173346/

A Mother’s Crusade to Find a Cure for Her Son - Amber Freed

Amber Freed is the mother of twins, Maxwell and Riley. At a year old, Maxwell was diagnosed with a disease too rare to have a formal name, referred to as SLC6A1. When Amber was told nothing could be done, she decided to fight. She left her career that day and shifted her focus towards a treatment. She's a leader in the rare disease community and is the founder of SLC6A1 Connect.

EPISODE HIGHLIGHTS

Give us a little background on the beginning of your journey as an advocate?

Tell us about your kids coming into the world and becoming a mom.

What started you on a mission to get answers about Maxwell's development?

What were the results of the genetic test?

Calling a scientist in Denmark was the beginning of your crusade. What has happened since then?

How much money have you raised so far?

What advice do you have for the listeners?

LINKS AND RESOURCES MENTIONED

SLC6A1 Connect https://slc6a1connect.org/

Donate https://slc6a1connect.org/donate-here/

Contact Amber [email protected]