SLC6A1 Connect
  • About
    • Who We Are
    • Our Founder
    • Our Vice President
    • Medical Board of Advisors
    • International Chapters
    • Inclusivity Policy
    • Access to Therapies
  • Milestones for Maxwell
  • Our Kids
  • Resources
    • Scientific Overview
    • SLC6A1 Resources and Information Summaries
    • Parent Bootcamp
    • Patient Resources
      • Newly Diagnosed
      • SLC6A1 Patient Registries
      • Research Opportunities
      • Recommended Doctors
      • Support
      • Angel Flight NE
      • Want to Help?
    • Scientist Resources
      • 2022 SLC6A1 Connect Symposium
      • 2019 Scientific Symposium
      • Current Research
      • Current Trials
      • Grant Program
      • Patient Videos
      • Journal Articles
      • Available Disease Models
    • Community Resources
      • SLC6A1 Family Map
      • Attract New Hires With Disabilities to Your Business With These Considerations
      • VIP Siblings
    • 2023 SLC6A1 Connect Symposium
  • Partnerships
    • Our Partners
    • Company Gift Matching
    • Want to Help?
  • Fundraisers
  • Contact
  • Genetic Testing
  • Patient Registries
  • Blog
  • Media
  • Donate

Uncategorized

Uncategorized

Upcoming Documentary: Too Rare to Care

Dear Family, Friends and Supporters of SLC6A1 Connect: In honor of Rare Disease Day (Week?) 2023, we are sharing this trailer for a new documentary, “Too Rare to Care,” by the fierce Rare Disease mother and talented producer, Lainey Moseley.  The documentary features our own superhero mom Amber Freed, who Read more…

By Kevin McEntee, 7 monthsFebruary 21, 2023 ago
Advocacy

Maxwell’s Favorite Thing – Riley

Maxwell was newly diagnosed with SLC6A1 and no doctor knew anything about it. More disheartening, no doctor wanted to learn.  I was feverishly reading anything I could get my hands on that could help my innocent little baby.  I was full of ideas and hope for an appointment with a neurologist, Read more…

By SLC6A1 Gene, 3 yearsJuly 1, 2020 ago
Home Cuts For A Cure
Advocacy

Home Cuts for A Cure

Who Needs a Haircut!?! Especially a Home Cut!?! We have decided to have some fun with our hair while raising awareness for SLC6A1.  I have never laughed so hard in my life with #HomeCutsForACure. Exhibit A: Mark Freed with a Mullet. Everyone that knows Mark well would barely recognize him Read more…

By SLC6A1 Gene, 3 yearsApril 24, 2020 ago
Advocacy

Striving for Mediocrity

Learn to be Thankful for What you Already Have, While you Pursue all that You Want – Jim Rohn          A month ago, I sat in the waiting room as Maxwell finished up his horse therapy session.  Gone are the days where his episodes of jerky, uncontrollable movements could be confused Read more…

By SLC6A1 Gene, 3 yearsApril 19, 2020 ago
Uncategorized

A First Birthday to Remember

In lieu of gifts, she preferred donations to help Maxwell.

By SLC6A1 Gene, 5 yearsJanuary 6, 2019 ago
Categories
Contact Us
afreed@SLC6A1Connect.org
Contact us anytime.
  • facebook
  • twitter
  • instagram
  • youtube
  • Milestones for Maxwell
  • Donate
 

Loading Comments...