Every 2 years the CdLS Foundation hosts a national conference in a different part of the country. We had hoped to attend the 2012 conference in Chicago but were unable due to Emery's unstable health at that time. The conference this year (June 26th-29th) will be hosted in Costa Mesa, California. Doctors from around the country who specialize in CdLS come together and attend the conference. The parents get to learn about the latest research and attend workshops. The CdLS children get a one on one consult with the specialists to set up an individualized care plan to bring back home to their doctors to help make sure they get the best care possible. The conference is an amazing opportunity to finally meet other families who go through the same struggles as us, learn from other's experiences, and just be in the company of those who "just get it" ; to feel "normal" for a couple days. Emery's sister Kyleigh will also be joining and get to see other siblings and how they interact with their special siblings.
We are raising money simply because we would hate for Emery to miss out on such an awesome opportunity simply because of the lack of funds. Attending school full time doesn't leave much room to plan out fundraisers, so this is kind of our one shot. The families are responsible for travel expenses, hotel costs, a rental car, food, and registration fees. We qualified for a first time attending scholarship so our registration fee was waived. But travel and hotel fees are not cheap. Anything helps. We are determined to get Emery to California one way or another (: thank you!
- Talitha Ebrite
- monja delgado
- Paula Williams
- jason norado
- Marguerite Davis
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