Niki Armstrong, MS, CGC

Niki is a board-certified genetic counselor with more than two decades of experience of working with families living with rare conditions.  Niki leads genetic services and education at FAST to ensure that every family understands genetics, clinical trials, and AS data. Prior to FAST, Niki worked in patient advocacy in Duchenne, leading Duchenne newborn screening efforts and providing genetics and clinical trial education. Niki lives in the Tampa Bay region, with her twin daughters, husband, and assorted pets.

Schedule a 1:1 meeting with Niki by clicking here.

A Message from Niki:

Thank you for welcoming me to FAST and to the AS community!  As a genetic counselor, I have partnered with many advocacy organizations over the years, and what the team at FAST has accomplished is truly inspiring.  The road to a cure is long and complicated, but FAST has developed and supported the elements needed to get to a cure for AS. I am thrilled to be joining this amazing team!

How you will support FAST’s mission to a cure:

As a genetic counselor,  I am excited to serve as a new resource for the community for questions about genetics, AS data, and clinical trials. From developing online and written materials to meeting with families one on one, I will help educate and support, meeting every family where they are. I will also be working with the Global Angelman Syndrome Registry, to understand what we've already learned from all the families who have contributed and to determine where best to go next as AS therapies progress.  I will also be monitoring newborn screening, making sure we have all pieces in place as that becomes a potential future option for AS.  AS is hard--families often have to push to get what their loved ones need.  Families are best able to advocate when they feel supported, and they have accurate, up-to-date information that they can understand, and I love being able to help with that process any way that I can.

What did you do before FAST?

I have been a genetic counselor for more than 20 years and have been privileged to work with families who have rare diseases in many different communities.  Most recently, I was with Parent Project Muscular Dystrophy (PPMD), an advocacy organization for Duchenne muscular dystrophy.  At PPMD, I led the newborn screening efforts, was a curator within The Duchenne Registry, met with families one-on-one to answer genetics and clinical trial questions, and collaborated on educational tools and materials for families and healthcare providers.  My exact roles have varied over the years, but my passion for family education and support has been constant. 

Fun facts about you!

1.  I live in Florida with my husband, my 15-year-old twin daughters, two cats, and a dog. My house is never boring.

2. Travel is my favorite.  My family is on a mission to see all the US National Parks.  We've been to just over half right now, and I've enjoyed almost every single park.  

3. I love running--it makes my body and my brain feel better.

4. I am a total geek--I like reading, puzzles, word games, and everything science and data.

5. I like to garden Florida-style, and my current obsession is bromeliads.