Local Charity Raises Awareness and Money for
Baldwinsville Teen with Rare Disorder
Cicero, New York – Local non-profit organization Hope Chest for Charity is raising awareness for a disorder so rare that it only effects between 2-20 cases per million births, and of the approximately 700 cases in the United States, one person lives right here in Central New York.
Gavin Gardner is a bright, funny, unique 17 year old who is a junior at C.W. Baker high school in Baldwinsville, NY. Gavin has been living with an extremely rare disorder known as Moebius Syndrome since birth.
Moebius syndrome is a non-progressive craniofacial/neurological disorder that manifests itself primarily in facial paralysis. Individuals with Moebius syndrome cannot smile or frown, and do not have lateral eye movements. Many individuals with Moebius syndrome also have skeletal involvement with limb
abnormalities or Poland syndrome. People with Moebius syndrome can have respiratory problems, speech
and swallowing disorders, visual impairments, sensory integration dysfunction, sleep disorders, weak
upper body strength and autism spectrum disorders.
The cause of Moebius Syndrome is unknown.
With Moebius Syndrome Awareness Day coming up on January 24, 2016, Hope Chest for Charity is
kicking off a fundraising campaign to send Gavin and his family to the Mobeius Syndrome conference in
California. They attended the 2014 conference that was held in Washington DC. Gavin’s Mom Laura
explained “My head was spinning from all the information I was gathering at my first event. We met so
many wonderful people and it was amazing to connect with other mom’s who are in a similar situation.
This was the first time in 15 years that I felt understood.”
Step Mom Jen explains “It would be almost impossible to come up with the money for a conference on the
opposite coast. The airfare alone would keep us from eating for a month, not to mention the conference
and hotel fees.” Keeping with the mission of Hope Chest for Charity, which raises funds for real
individuals in need, we have found that if everyone comes together with a few spare dollars, we can
certainly reach our goal, which is to give a gift to Gavin...the gift of knowledge, learning, understanding
and acceptance at the Moebius Syndrome Foundation Conference.
More information about the conference and Moebius Syndrome Awareness Day can be found here:
To watch Gavin’s video and for more information, click to: http://www.hopechestforcharity.com/gift-for-gavin.html