This year, Raising A Rare has organized the Lamb-Shaffer Syndrome gathering in Cleveland, OH on July 18 & 19!
Cleveland, OH
Friday, July 18:
4PM: Euclid Beach Shelter
We will be serving "picnic" foods such as pulled pork, hot dogs, potato salad, fruit, etc. There are bathrooms nearby, a playground, and access to the beach and pier.
Saturday, July 19:
10am: Location TBD
After breakfast, we will meet to hear from Veronique Lefebvre, the researcher from CHOP who is leading the research on the SOX5 gene.
12pm: Residence Inn Pool
For lunch we will provide sub sandwiches and chips by the pool.
4pm: We Rock the Spectrum
We reserved the entire facility for our group. We will provide pizza for dinner and the kids can play safely in the gym.
Sunday, July 20
Check out/departure
There will be no official events on Sunday but we will be in the lobby for breakfast and in the hotel if you need any assistance!
*You will receive an email with the itinerary and any other details as we get closer to the event.