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 in participating or sponsoring, please let me know. Milestones for Maxwell has also been chosen…
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 talent, it is also a source of hope for patients. Miracles are underway in the…
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 in the midst of our most private heartache to make our story very public. It…
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 said she would run away if she ever saw Santa again. Cherry Creek mall paused…
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 mutant mice in China – to help cure SLC6A1. If anyone would like to help,…
Elisabeth
NAME: Elisabeth Tegen (known as Beth) CURRENT AGE: 7 HOME TOWN & STATE: Hungerford, Berkshire Uk DIAGNOSIS DATE: April 2018 PARENTS: Annette and Pete SIBLINGS: Maddy and Jago What it felt like when we learned our child has SLC6A1? Everything seemed daunting; the lack of knowledge about SLC6A1 was difficult to comprehend and process. When…
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 during the months of October and November. In the great words of Bonjovi, We are…
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 would recognize their families on the street and probably ask about their latest pumpkin patch…
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 would see in a grocery store and smile watching her select bananas with excitement. In…