A few weeks ago, Hazel, Greg and I were able to meet with two other families who have children with Bohring-Opitz Syndrome. This was an exciting experience for us, as we were able to meet other children like Hazel for the first time. 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, 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 for Hazel and children like her.
I have a personal goal of raising at least $500 to help pay for this event.
Could you help me meet this goal? Your funds will help pay for the cost of the venue, food, medical advisory board travel, face painter, and goody bags for the families. Hazel has agreed to send a personalized piece of artwork to every friend and family member who contributes by June 30!
To donate to the BOS Foundation via PayPal or check, please visit:
You may also purchase BOS Awareness T-Shirts through our Booster Fundraiser. The sale ends June 30!
Thank you so much for your support of Hazel and other kids living with BOS!