When our daughter Hayden was diagnosed with Angelman Syndrome in 2010, we vowed to do what we could to help not only raise awareness for this rare condition that affects 1 in 12-15,000 individuals, but also do everything we could to help fund a cure for this debilitating neurologic disorder.

Children with AS suffer seizures, lack of verbal communication, sleep disorders which not only affects them, but their entire family who lives with them, balance and coordination issues which challenge their ability to walk, and cognitive delays. Often, just getting out of the house is an uphill battle raising a child with this condition, made even more challenging in the covid world we have lived in over the past few years. 

This past December, David McCurdy and I had the opportunity to attend the FAST Gala in Austin, TX and listen first-hand to researchers and pharmaceutical companies present updates on the research into finding viable therapeutics and ultimately a cure for Angelman Syndrome. It filled my husband and I with hope that while this climb has sometimes seemed unrelenting, the summit is truly within reach.

This year I am throwing all of my energy and effort into fundraising and racing the Breck Epic, a 6-day mountain bike stage race, taking place Aug 14-20, 2022. The race itself involves 6 days of technical mountain biking on the high country trails above Breckenridge, Colorado. Each day, the race begins at 10,000 feet elevation and climbs from there for 35-50 mile segments. In total, the race covers around 240 miles and over 40,000 feet of climbing.

Why Breck Epic? Every day my daughter works so hard just to do simple things the rest of us take for granted. She struggles, fights to be understood, accepted, and live in a world we can't relate to. For 6 days I am going to put myself through the biggest challenge I have ever attempted, testing myself physically, mentally and emotionally, to see if not only I can complete the race, but stand victoriously on top of the most epic of climbs and ultimate finish line. The reward: the day I hear my daughter speak with her own voice and run her own race, whatever that may be.

Better Days Are Coming! Together we CAN cure Angelman Syndrome. FAST researchers know exactly what causes Angelman syndrome (AS) and have already cured it in the laboratory. Much of this pioneering, critical research was funded by our FAST community. Today, this research has led to the announcement of several revolutionary clinical trials that hold the potential to treat, and ultimately cure this rare disorder.Please help me support this critical research that CAN make a significant difference in the life of my loved one living with AS by clicking the Give Now button and donating whatever you CAN. Every amount is appreciated and gets us closer to our goal! The more people that know about FAST, the greater the impact, so please spread the word by sharing this page.Your donation to my page will help fund critical research to accelerate the therapeutic pipeline that will benefit all individuals living with AS, regardless of age or genotype. Thank you in advance for your generosity!