A few weeks ago, Hazel, Talynn and River, three children with Bohring-Opitz Syndrome, were able to meet each other for the first time. This was an exciting experience for all of the families! Since there are less than 60 known cases of BOS in the world, it’s very rare to be able to meet other families living with this condition. We were able to compare treatment notes, try out each other’s equipment, and bond over our shared parenting experience.
In August of 2016, the BOS Foundation is hosting the first official BOS meet-up in Philadelphia. This meet-up will give other families the opportunity to have the same experience we had, but on a much larger scale. Families will unite to celebrate our children and to share information on the best ways to care for them and thrive as very unique families. We will also have the chance to meet a few of the medical experts who research BOS. This is a fantastic opportunity to raise awareness of BOS among our medical community, motivate BOS research, and get answers on the best course of treatment.
Our goal is to raise at least $2,000 by June 30th to help pay for this event.
Can you help us make this happen? Your funds will help pay for the cost of the venue, food, medical advisory board travel, entertainment, and goody bags for the families. Those who donate $10.00 or more will receive a BOS awareness wristband as a thank you.