The Be Bold bracelet was created for the Coffin-Siris Syndrome Foundation in celebration and support of their annual conference. Coffin-Siris Syndrome (CSS) is a rare genetic syndrome affecting between 500-2000 people worldwide. CSS affects every area of development and major organ systems. CSS patients require specialized medical care to meet their complex needs, which can include feeding difficulties, frequent respiratory infections, hearing loss, epilepsy, congenital heart defects, myopia, hypotonia, joint laxity, and short stature. CSS is associated with varying degrees of intellectual and developmental disability, and autism. The Coffin-Siris Syndrome Foundation was established in 2017. Their mission is to connect, support, and inform the CSS community, and to promote related research.
The theme for this year's conference is BE BOLD. The conference is an opportunity for people with CSS and their loved ones to connect with others, and alleviate the loneliness that often comes with a rare diagnosis. Many CSS families rely on a small network of virtual support. The conference will unite a community that is unique in their everyday lives, and remind them they are not alone. Participants will enjoy inclusive, fun activities with family and friends, and form lasting bonds within the community.
Connect. Live. Give.
Connect your bracelet for exclusive access to Nice Nation's online community. Enjoy early access, exclusive offers, and connect with fellow members. Follow your Word's journey as you pass it on to someone who needs it more. A win all around!
