2017 Coffin-Siris Conference
Donation protected
Friends and family... we need your help! August 4-6, 2017 we are hosting a conference for Coffin-Siris Syndrome in the Seattle, WA area. As a very rare syndrome, we are still in the process of establishing a non-profit, and are leaning on our networks and resources to help pull this together.
Coffin-Siris Syndrome is a rare genetic syndrome. Our children are among 200 or so diagnosed worldwide. CSS impacts cognitive, motor, speech and often feeding development, and often impacts multiple body systems. Many of our children are non-verbal and tube fed, and most have never met another kid “like them”.
This summer we are hosting our 2nd US conference in Seattle. We have people coming from all over the US, as well as Canada and the UK. We will be hosting speakers and break-out sessions, and an opportunity for families to connect with the small group of others who share the same genetic mutations and similar journeys. We are still trying to get a firm grasp as to the number of people we are expecting, but right now we’re guessing somewhere in the 20-30 family range. Ideally, we would need a “large” room for adults for conference sessions, and a room for kids. We will provide childcare and this will be supervised.
We are doing this ALL on our own. The budget we have is in our own pockets. Can you help? Could you donate a space for our conference? Does your work have any conference rooms? Could you donate food? Dinner? Breakfast? Snack? Fruit? Coffee? Bottled water? Pens? Paper? Could you make copies for us? Help us make a packet? Staple papers for us? Could you help us with technical support? Help us set up a video presentation? Could you take video or pics of our conference? Could you provide fruit or make us cookies, snacks or cake? Could you help us with childcare? (This is a big one!) Could you help pick up families from airport? Could you help us rent a van? Can you help us start a non profit? Can you help us by donating money? Could you give a presentation to our group? Feeding therapy, OT, PT, behavioral, family support, anything you do that could help us? Anything you could do for us would be amazing.
In advance, THANK YOU, THANK YOU, THANK YOU!
Carissa & Shea Robinson and Maria Riojas (and the larger CSS community)
Coffin-Siris Syndrome is a rare genetic syndrome. Our children are among 200 or so diagnosed worldwide. CSS impacts cognitive, motor, speech and often feeding development, and often impacts multiple body systems. Many of our children are non-verbal and tube fed, and most have never met another kid “like them”.
This summer we are hosting our 2nd US conference in Seattle. We have people coming from all over the US, as well as Canada and the UK. We will be hosting speakers and break-out sessions, and an opportunity for families to connect with the small group of others who share the same genetic mutations and similar journeys. We are still trying to get a firm grasp as to the number of people we are expecting, but right now we’re guessing somewhere in the 20-30 family range. Ideally, we would need a “large” room for adults for conference sessions, and a room for kids. We will provide childcare and this will be supervised.
We are doing this ALL on our own. The budget we have is in our own pockets. Can you help? Could you donate a space for our conference? Does your work have any conference rooms? Could you donate food? Dinner? Breakfast? Snack? Fruit? Coffee? Bottled water? Pens? Paper? Could you make copies for us? Help us make a packet? Staple papers for us? Could you help us with technical support? Help us set up a video presentation? Could you take video or pics of our conference? Could you provide fruit or make us cookies, snacks or cake? Could you help us with childcare? (This is a big one!) Could you help pick up families from airport? Could you help us rent a van? Can you help us start a non profit? Can you help us by donating money? Could you give a presentation to our group? Feeding therapy, OT, PT, behavioral, family support, anything you do that could help us? Anything you could do for us would be amazing.
In advance, THANK YOU, THANK YOU, THANK YOU!
Carissa & Shea Robinson and Maria Riojas (and the larger CSS community)
Organizer
Carissa Robinson
Organizer
Kirkland, WA
