Quincy and her sisters, our inspiration

January 11, 2017

Quincy has had a wonderful 2016. She is crawling everywhere, cruising on all the furniture, full of curiosity and trying her hardest to walk. She is making great strides in all of her "inch-stones" as we call them, as the milestones take a bit longer for her to reach than her typical sisters. Quincy welcomed her baby sister Piper into her life this year and that has filled our home with another level of joy, love, support and pure innocence. Piper is in love with Quincy and follows her every move. She came to us for a reason, and Quincy is a huge part of that reason. We are grateful. Kai, Quincy's older sister, is taking on this responsibility of double big sister VERY seriously, and has been amazing. She helps her sisters learn everything at their own pace. She is brilliant, and understands we are all different and we all do things in different ways at a different pace, and that is why "she loves Quincy to the moon." Quincy speaks with symbols and that is "super cool" as Kai puts it.

 

This year has been amazing for Angelman Syndrome. AS has been "taken on" by the best in the world for gene therapy trials. The world experts are aiming to CURE Angelman Syndrome with human clincial trials starting in 2 years. Money is all they need and we are working so hard to raise it. We raised $1.25 million at our fundraising event in Chicago, and are only $2.25 short of our budget. We are working every day to make this happen. We know that major therapeutic change will happen with gene therapy, and we also expect the earlier in the course of the condition will have the greatest impact, so we are on a tight timeline for our Quincy being 2.5 year old.

 

This year I, Quincy's mom, became the Chief Scientific Officer for the Foundation for Angelman Syndrome Therapeutics (FAST). www.cureangelman.org  This was a huge honor to be in this position, but also a huge commitment. I am committed to ensure a cure for Quincy, and all of her friends affected with AS. We will do everyting we can to have this at their disposal as quickly as possible. The board of this foundation is amazing, and the scientists are working day and night for the same goal. It has been an eyeopening experience for me to see the science from the start, see the mice and the rats cured before our eyes and see how much work goes into one simple idea. I am honored to know what I know and see what I see.

 

We are expecting a great 2017. Clinical trials in other therapeutics for AS have already started for adults, and we are waiting patiently for Quincy's turn. She is a fighter, she is a beauty, she is a light in every room, and we are changed people because of her. This is her and her sisters! The light of our life.

 

 

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January 11, 2017

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