The Huffington Post recently devoted time with my family to fully understand our daily struggles as we battle a rare disease to save Maxwell. The journalist and photographer deeply cared about Maxwell and felt our sense of urgency as we frantically race to develop a gene replacement therapy for Read more…
I spent my career in equity analysis and made some very dear friends along the way, most recently at Janus Henderson Investors. When doctors began warning us that Maxwell was not well, I left my career in a frazzled, frantic state. I tried to be strong the day I resigned Read more…
Each year, Global Genes, a leading global rare disease patient advocacy organization, asks the community to nominate those deserving of recognition for their extraordinary efforts in rare disease. Nominations are accepted in the areas of advocacy, medical care and treatment, and science and technology. I was nominated this year to Read more…
First a fundraising update – we have raised over $200,000 with over 1,300 contributors since we started our campaign four months ago. Thank you! Thank you! Thank you! Are you in Denver, the Golden Area or Pueblo and would like to support our efforts to cure his rare neurological disease? Read more…
60 Minutes aired a story about gene replacement therapy CURING sickle cell anemia. The story highlighted a woman experiencing pain as “very sharp, like stabbing, almost feels like bone-crushing pain.” She was barely capable of physical activity, spent weeks a year hospitalized and didn’t know if she would live into Read more…
Thrive Mortgage hosted a gala Friday evening to benefit Maxwell and the night was absolutely incredible. Guests arrived to a #MilestonesForMaxwell red carpet before heading into the beautiful event. The event was so much fun with so many games! The silent auction featured artwork from Lindsay Jane Ternes Fine Art Read more…
Kim Christiansen with 9News graciously told our story on the Denver news tonight. Our family anxiously gathered around the TV waiting for our big debut. Kim covered our story with the care and understanding of a fellow mother, and our comfort during the interview is evident in the finished product. Read more…
Maxwell is surrounded by guardian angels and his army grows daily. One of his guardian angels is a woman named Laura Leavy with Thrive Mortgage. Thrive Mortgage & Legend Title host an annual business mixer & client appreciation charity gala. Laura Leavy selected our non-profit to be the recipient of the gala this year! We could not be more humbled, honored or excited for this fun filled event. There will be a red carpet, wine pull, raffle, silent and live auction items. The evening is going to be an absolute blast with confirmed celebrities:
Please join us for the star studded event! We look forwarding to seeing you there! Thank you again to Thrive Mortgage & Legend Title. Tickets can be purchased here:
We put on the first symposium for Maxwell’s disease in late November and it was an overwhelming success. The many late nights of planning all came to fruition in the best way possible! The experience of having 50 brilliant scientists, from all over the world, collaborating on the cure for Read more…
FOR IMMEDIATE RELEASE Contact: Amber Freed, SLC6A1 Connect Phone: 303-907-8038 Email: afreed@slc6a1connect.org SLC6A1 Connect Earns GuideStar Platinum Seal for 2018 Potential funders can see that SLC6A1 Connect is Committed to Highest Level of Transparency DENVER, CO, October 2018 – SLC6A1 Connect is proud to announce that we have earned the GuideStar Platinum Seal Read more…