Once Upon A Gene

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


Listen Later

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/

...more
View all episodesView all episodes
Download on the App Store

Once Upon A GeneBy Effie Parks

  • 5
  • 5
  • 5
  • 5
  • 5

5

277 ratings


More shows like Once Upon A Gene

View all
10% Happier with Dan Harris by 10% Happier

10% Happier with Dan Harris

12,724 Listeners

The Lazy Genius Podcast by Kendra, The Lazy Genius

The Lazy Genius Podcast

6,639 Listeners

Where Should We Begin? with Esther Perel by Esther Perel Global Media

Where Should We Begin? with Esther Perel

14,934 Listeners

Feel Better, Live More with Dr Rangan Chatterjee by Dr Rangan Chatterjee: GP & Author

Feel Better, Live More with Dr Rangan Chatterjee

3,942 Listeners

Everything Happens with Kate Bowler by Everything Happens Studios

Everything Happens with Kate Bowler

5,112 Listeners

Laugh Lines with Kim & Penn Holderness by Kim & Penn Holderness

Laugh Lines with Kim & Penn Holderness

3,381 Listeners

The Rare Life by Madeline Cheney

The Rare Life

149 Listeners

Good Inside with Dr. Becky by Dr. Becky Kennedy

Good Inside with Dr. Becky

4,522 Listeners

Rare Mamas Rising: A Rare Disease Podcast by Nikki McIntosh

Rare Mamas Rising: A Rare Disease Podcast

29 Listeners

We Can Do Hard Things by Treat Media and Glennon Doyle

We Can Do Hard Things

41,561 Listeners

Moms Talk Autism Podcast by Shannon Korza, Brittney Crabtree, Tash Dillmon, and Jean Mayer

Moms Talk Autism Podcast

362 Listeners

The Mel Robbins Podcast by Mel Robbins

The Mel Robbins Podcast

20,182 Listeners

On Fire with Jeff Probst: The Official Survivor Podcast by CBS

On Fire with Jeff Probst: The Official Survivor Podcast

7,344 Listeners

Good Hang with Amy Poehler by The Ringer

Good Hang with Amy Poehler

10,087 Listeners

Midlife Lady Leisure Pursuits by Meagan Francis and Sarah Powers

Midlife Lady Leisure Pursuits

71 Listeners