I had planned a massive birthday party for the twins with a music class, Peppa the Pig appearance, lots of decorations and of course, good food. Unfortunately, COVID19 reset all expectations and plans for the world. At Some Point You Read more…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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