Thank you for visiting! I am running the 2024 NYC marathon on November 3rd in honor of sweet Anna, our 6 year old daughter, and to raise funds for the Dravet Syndrome Foundation.
Anna was born in September 2017 and diagnosed with Dravet Syndrome in May 2018 after suffering from prolonged seizures. She has been to the hospital emergency room many times and experienced over 1200 seizures in her short life. Similar to other children living with DS, Anna faces significant challenges associated with her condition beyond the seizures. These include developmental delays, sleep disturbances, physical limitations, behavioral challenges, sensitivity to illness and traits associated with autism. Despite the considerable difficulties that living with Dravet Syndrome brings, Anna continues to amaze us with her strength and resilience. She recently completed Kindergarten and will be starting First Grade in the Fall. She is very affectionate and usually has a smile on her face.
Unfortunately, Dravet Syndrome is very treatment
resistant, and Anna continues to have frequent seizures despite taking multiple
medications. We recognize that a disease-modifying treatment such as gene
therapy is likely necessary to ensure a favorable outcome for Anna and allow
her to one day live an independent life. Some of these potential treatments are
in the later stages of development, making truly disease-modifying therapies
closer to reality for DS. Such progress can be attributed to the
Dravet Syndrome Foundation and the work they have done in supporting associated
research advancements. We remain hopeful and optimistic that Anna will soon
have access to one of these treatments and provide us with the life changing
miracle we are hoping for.
I couldn't be more excited to be running NYC for Anna and in support of the Dravet Syndrome Foundation, a very important and meaningful cause for me and family. Please join me on this journey! Your donation puts me one step closer to meeting my goal and it will truly make an impact for those living with Dravet Syndrome.
