The day started out as any other. My then five-and-one-half month-old daughter and I were walking around the aisles of our local grocery store. One minute my sweet baby was smiling and cooing, and the next she was shaking and unresponsive. I remember sprinting through the store, frantically asking for paramedics and for help. That was Ciara's first seizure. It was a 25-min long tonic–clonic. It was terrifying and it changed our lives. At the time, we knew nothing of the epilepsy world. We believed the doctors that is was most likely a one-time event, provoked by a fever. But the seizures kept coming and didn't let up. At 11 months old, Ciara was diagnosed with Dravet syndrome, a rare and intractable form of epilepsy. By the time she had turned 2, she had experienced dozens of status seizures in addition to the hundreds of daily myoclonic jerks. We tried and failed many antiepileptic medications and we consulted with any doctor we could think of. We initiated the ketogenic diet, which thankfully stopped the myoclonic jerks, but her prolonged seizures continued, with one resulting in intubation. We consider it a miracle that today at age 8, Ciara's development has continued to progress. Much to our delight and pride, she is currently a third grader, reading and writing at grade level.
This is when epilepsy entered my life. The seizures have changed the way I see each day. My memories are marked by places Ciara has had seizures or of holidays cut short by emergency room trips. However, I am a determined woman and I want my daughter to have the fullest life possible. I stare seizures in the face; Ciara will win! I believe there are better treatments out there and I firmly believe that empowered parents get the greatest results. With those thoughts in mind, I jumped from the position of idly watching my daughter seize, to doing something. At first I volunteered for syndrome-specific organizations, but in 2009, I truly felt a passion to direct my efforts specifically to research. I joined forces with other, similarly driven parents and formed the Dravet Syndrome Foundation (DSF). I will never forget our initial conversations about our goals for the organization. Our vision has never wavered. We wanted to bring together families and professionals in the scientific community to fund research that would directly impact our children's future.
I am incredibly proud of DSF—both what we do and what we stand for. The mission of DSF is to aggressively raise research funds for Dravet syndrome and related epilepsies; to increase awareness of these catastrophic conditions; and to provide support to affected individuals and families. We fulfill our mission through our five programs: Research Grant Awards; Patient Assistance Grants; IICEPR (International Ion Channel Epilepsy Patient Registry); DSF Research Round Table; and our new education and awareness program aimed at professionals: Consider Dravet. Since our inception in 2009, I am very proud to say we have awarded over $1.6 M in research grant awards and $60,000 in patient-assistance grants, worldwide.
In order to fund our programs, we must fundraise. We certainly rely on our families around the world to hold personal fundraisers for DSF. However, as parents ourselves, we realize that circumstances don't always allow for personal yearly events. To this note, we have instituted yearly events sponsored by DSF. Our signature event is our yearly gala: Ciara's Butterfly Bash. This gala, held in Greenwich, CT, brings together members of the community, families, medical professionals, and our board to both celebrate the accomplishments made in the field and raise crucial money to further this critical research. In conjunction with the gala, we honor a pioneer in the field of Dravet syndrome as well as individuals who go above and beyond to support DSF. In addition to the gala and personal events, DSF proudly hosts Steps Toward A Cure, our annual walk series that takes place in multiple cities around the globe. Local families volunteer to coordinate walks in their home cities to raise awareness, support, and funds. Lastly, Team DSF RACRE is our team of runners who participate in various full and half marathons to raise money for DSF. The gala, the walk series, and the marathons bring in over $400,000 a year to directly support the programs of DSF.
I would be incredibly naive to imply that we parents did this all by ourselves. If not for the guidance of our incredible Scientific Advisory Board (SAB), we wouldn't know what research to fund or what programs were truly worthwhile. Our SAB is incredibly involved; it is chaired by Jack Parent, MD, of the University of Michigan. Our SAB oversees the organization's research activities and heads our Research Grant Program. The board meets annually with other interested researchers and scientists to discuss innovative and promising research in the field of Dravet syndrome at DSF's Research Roundtable. Dr. Parent and SAB member Ian Miller, MD, of Miami Children's Hospital Brain Institute, assisted us in establishing our patient registry, which is co-funded with ICE Epilepsy Alliance. Our patient registry will expedite future clinical trials and will improve communication of ideas among interested researchers, as well as ensure rapid distribution of any new information that may benefit patients and their families.
Each day I wake up and wonder if Ciara is going to have a seizure, that is, if she did not have one before rising. Each day, I am eternally grateful that Ciara has woken up. I carry the names of the children who lost their lives to seizures, to Dravet syndrome, very close to my heart. For Ciara, and for all the children and adults who fight this terrible disease, I will not give up. I firmly believe that if we collaborate globally we can shorten the timeline for better treatments for Dravet syndrome. DSF works with other Dravet syndrome and epilepsy organizations worldwide, whenever possible, with hopes of finding a cure. We know that funding and time is limited and we want to avoid duplication of efforts by keeping abreast of each other's projects. We have recently joined with other Dravet organizations to establish the first annual international Dravet Syndrome Awareness Day, which will take place on June 23, 2014. It is our hope that by finding better treatments and even a cure for Dravet syndrome will unlock secrets to treating all forms of epilepsy.
Epilepsia readers who would like more information on Dravet syndrome, as well as DSF and our programs, should visit our website, www.dravetfoundation.org. You may also contact me by e-mail at firstname.lastname@example.org.