Why did I accept a Directorship of EDNF?

My son Aaron, was diagnosed with Ehlers-Danlos syndrome at age 1. We have been frustrated by the lack of knowledge and treatment options for him. The only way for there to be a change is for us to be part of making it happen. I want to be part of making the future better for Aaron and all of those who have Ehlers-Danlos syndrome. 

What skills and experience do I bring to the position?

On the board, I am primarily representing parents and children with EDS. Our family has done several fundraisers (golf outings, bowling, raffles) to raise money to support EDNF through the Sabal EDS Foundation. I have been a member of EDNF for nine years. For three of those years I ran the Chicago Branch of EDNF. Professionally, I am a speech pathologist with over 20 years of experience working with children with disabilities. I have always been a strong advocate for my students and have become an even stronger advocate for those with EDS.

What do I want to achieve as an EDNF Board Director?

I’d like to help promote EDNF as the primary resource for those affected by EDS, medical professionals, and families.