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News

Events

Upcoming Events – Save the Date

Lots of Fun Things! SLC6A1 Connect will be hosting the First Annual Golf Tournament at Fossil Trace Golf Course in Denver, CO. The course is truly beautiful and there will be a lot of fun surprises.  If you are interested Read more…

By SLC6A1 Gene, 12 months11 months ago
Events

JP Morgan Chase

JP Morgan hosts the world’s largest healthcare conference every year in San Francisco. If you want to learn about the latest innovation and advances in biotech, the conference is the place to be. Not only does it boast world renowned Read more…

By SLC6A1 Gene, 12 months11 months ago
Community

A New Year

Living with a Rare Disease is like Walking a Tightrope over the Grand Canyon.  Your gaze must stay focused forward on achieving treatment.  You can never look backward or down because you will stumble and fall. In 2019, we stepped out Read more…

By SLC6A1 Gene, 1 year11 months ago
Community

Merry Christmas from the Freed Family!

Maxwell and Riley knew that Santa Clause was coming to town on Christmas Eve and were so excited! Well, they were * kind of * excited.  They did not enjoy meeting Santa at the mall  as you can see.  Riley Read more…

By SLC6A1 Gene, 1 year11 months ago
Research

The Mouse Has Landed

I will literally do anything to help Maxwell even if it requires smuggling mice internationally. Before I even dive into this blog post, BuzzFeed has done an incredible job telling my story – from developing a gene therapy to creating Read more…

By SLC6A1 Gene, 1 year11 months ago
Partners/Philanthropy

Matching Grant

A Generous Donor is Matching Every Dollar Raised for October & November! We have the most loyal friends that want to see Maxwell & every other affected child cured of SLC6A1.  A generous donor is matching up to $50,000 raised Read more…

By SLC6A1 Gene, 1 year11 months ago
Advocacy

The Daily Blast Live

I recently shared my story with the national talk show, The Daily Blast Live. I have loved the show for a very long time and actually followed two of their hosts, Sam Schacher and Jeff Schroder on Instagram forever. I Read more…

By SLC6A1 Gene, 1 year11 months ago
Community

Standing on the Shoulders of Giants

An adorable little girl named Mila Makovec lives just a half hour away from us in Boulder, Colorado. Mila has giant brown eyes, loves chocolate ice cream and singing along to Frozen. Mila is the type of little girl you Read more…

By SLC6A1 Gene, 1 year11 months ago
Community

A Day of Celebration

The rare disease world is filled with many high-highs and low-lows with some days being much better than others.  I cling to the happy days when Maxwell learns a new skill, scientists reach a milestone achievement or something wonderfully unexpected Read more…

By SLC6A1 Gene, 1 year11 months ago
Advocacy

Some Patients’ Best Hope for a Cure Is to Develop It Themselves

The dreaded day we received the news that Maxwell was diagnosed with SLC6A1 was the worst day of my life.  Mark and I sat at Children’s Hospital and listened to a never-ending list of things Maxwell would probably never do.  Read more…

By SLC6A1 Gene, 1 year11 months ago

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afreed@SLC6A1Connect.org
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