- M
- D
The 3rd annual Coffin-Lowry Syndrome Annual Meeting is coming up quickly! This year we are so excited to gather in the Washington, D.C. area from August 4th through August 7th. We attended last years gathering in Florida. I cannot tell you how much we learned from all the other families. The friendships that we made are amazing. I think we all learned so much about our children just from talking to each other and finally meeting in person.
The money that is raised from this campaign will go directly towards another amazing fun filled weekend packed with squeals of laughter from our children and many learning moments for parents. Jennifer Hare is working very hard on the upcoming weekend by securing the venue, guest speakers and other exciting and educational topics that will soon be announced.
As you know, Coffin-Lowry syndrome is very rare and a lot of new information is usually provided from one family to the next through our online support groups. These annual meetings are so important not only to help raise awareness and get researchers involved in the disorder, but to have the opportunity to speak with families face to face and hear their experiences.
The video attached to this page does an excellent job explaining CLS and how it affects our children. The familiar faces in this video are just a few that we hope make the trip to DC for this unforgetable family gathering and fantastic opportunity. The pictures below are just a few from last year.
Please make a donation to help keep this event going. Any amount wil help us reach our goal and is greatly appreciated. Every dollar counts!
Organizer and beneficiary
Jennifer Hare
Beneficiary