2017 Coffin-Siris Conference

$10,210 of $10,000 goal

Raised by 66 people in 22 months
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.


Carissa & Shea Robinson and Maria Riojas (and the larger CSS community)
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We are days away, and in complete awe at the support our community has shown. Thank you isn't nearly enough.

Here's what's happening this weekend:

We have 25 families coming from 3 countries. We are on our way to having an established nonprofit/foundation. We feel loved and supported, and we are so eager to share that with 130 people this weekend in Seattle. Thanks for being a part of this with us!
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We continue to be stunned and humbled by all of your love and support for seeing this community come together this summer. Thank you. We have a few updates to give:

We've secured a venue for the conference and have blocked out rooms for families to stay. This feels like the first big thing to check off the list! We have so many families interested and committing to come. So much of that is thanks to all of you who have generously given financially, as we've been able to cover the cost of the conference space and several meals thanks to so many of you. We have chosen the venue based on what they could provide for the lowest cost we could find. We have some families who are still struggling with finances to make it out here, and will be using some of this money to help cover their cost. Thank you again for being so generous so that this community can gather and be blessed with some respite and time together.

We have a few geneticists who are coming and speaking and are in the process of lining up other speakers.

We can't express enough how thankful we are for all of your support!
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YOU GUYS. We are already so touched by the eagerness and the generosity of so many. Thank you!! All money raised will be used to offset the cost of conference space and kid space, speakers, food, transportation, materials, etc. We can't even express our genuine thankfulness for joining us in this!
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$10,210 of $10,000 goal

Raised by 66 people in 22 months
Created January 24, 2017
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16 months ago
16 months ago
Deborah Aguirre
17 months ago

You are bringing so many people together to build a family. What a wonderful thing you are doing! Gabriel is an amazing boy!

Soledad Ceja
17 months ago

We love you Gabi!!!

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