Lite the Night on FIRE, a benefit for FAST

Please join us for a unique fundraising event on Friday, Sept. 11th, 2015 at Boston Harbor Hotel from 7:00-11:30pm. Enjoy great food & drinks, dancing to the band Fusion, guest speakers, silent auction, and inspiring “Lite the Night” paddle raise. FAST is committed to raising at least $20 million to continue support of the FIRE […]

More than just a wheelbarrow

Most parents of a child with Angelman syndrome (AS) would do whatever it takes to create a new, brighter future for their children and a great deal of us choose sporting challenges as our avenue to help, to make a difference.   Each week we post new stories of people setting goals and pushing the limits […]

Extraordinary measures

“It is good to have an end to journey toward; but it is the journey that matters, in the end.”~Ernest Hemingway To families of individuals with Angelman Syndrome or any disorder, the beginning of the De Greef family’s journey will be a familiar one.  A story of how they discovered the journey they are on […]

Be a Hero, Save an Angel

by Jessi-Scott Backer On February 7, 2006 our second child was born.  A beautiful baby girl with blonde hair, stunning big blue eyes and extraordinarily fair skin.  A perfect angel we thought. Little did we know that the next several weeks, months and years of her life would prove to make that term of literal significance […]

Making the Bank Pay

A monumental amount of training is required to tackle an Ironman, our community, with two dedicated running groups; Miles for Smiles and Angel Runners is eternally grateful for those who challenge their bodies while raising funds for FAST at the same time! This weekend The Ochsner New Orleans IRONMAN 70.3 will be held,  comprising of […]

A Chance Encounter…A Forever Friend

I don’t think a day goes by when a board member of FAST isn’t asked why or how we volunteer so much of our time and energy to this organization.  The answer is simple:  we are honored to represent our extraordinary children and their equally extraordinary family and friends.  I am humbled to share with […]

Moms Rock 5K for FAST

Meet 3 year old Anna.  Anna is an adorable Castle Rock preschooler and the oldest daughter of two Active Duty Air Force parents.  Anna is a big sister with a big smile, she likes Dora the Explorer, the aquarium, going the park and playing with friends. Anna also suffers from Angelman Syndrome, a rare neurodevelopmental […]

The things we do for love – Virtual 5k

by Timothy Misiak My cousin’s daughter Kyla was diagnosed with a rare neurodevelopmental disorder called Angelman Syndrome (AS) when she was only 22 months old. Kyla (right) is now 4yrs old, she is unable to speak, but she luckily is able to walk (she never stops). Kyla’s seven year old brother Ashton loves his sister so much, […]

Generating support in the search for a cure – building partnerships

In an Australian first, the opportunity to hear about Angelman Syndrome research being conducted overseas was showcased at a scientific symposium at the Royal Children’s Hospital on February 1st.  The Foundation for Angelman Syndrome Therapeutics Australia’s (FAST AU) Inaugural Scientific Symposium was a ringing success. Currently there is no research into Angelman Syndrome (AS) in […]

Anyone can hustle

Written by Becky Rubenow Howard, Mom to Erinn. This year, over 60 parents, grandparents, siblings, aunts, uncles, friends, caregivers and angels boarded a trolley early Gala morning to participate in the Chicago Santa Hustle 5k alongside 8,000 other hustling Santas.  While several of us had asked Paula Evans to provide snow for the hustle, she instead […]