Executive Director & Staff
Mary Anne was a founding member of DSF, stepping off of the Board to take the position of Executive Director in 2012. She is a passionate advocate for the Dravet syndrome community and has served in various capacities for the community prior to the inception of DSF in 2009. In addition, she currently serves on several epilepsy working groups, including the Epilepsy Leadership Council and the Rare Epilepsies Network Registry.
She has owned and managed several small businesses in the private sector, spanning over 25 years. This business experience has translated well into her role as Executive Director. She is responsible for the overall organizational management and has continued to expand programming and fund development for DSF.
Mary Anne resides in Illinois with her husband and three children, the youngest of whom has Dravet syndrome. It is her son who drives her to be a catalyst for change within the Dravet syndrome community.
Amanda is a mom to three beautiful girls and wife to an incredibly supportive guy. The family of five lives in Connecticut. Her oldest daughter, Molly, has an unnamed syndrome that is closely associated with Dravet syndrome. Amanda has been with DSF since its inception in 2009, originally serving as a board member. Most recently Amanda works to assist in day-to-day tasks and you may see her at various fundraising events. Before DSF came into her life, Amanda was a middle school music teacher and holds a Master’s degree in education. Now, in her spare time, she teaches and assists in the local adaptive arts dance and theater program.
Jamie holds a B.S. in accounting from Rutgers University and is a licensed certified public accountant. She has 7 years of experience in public accounting and over 10 years experience in nonprofit accounting. She currently holds positions as the accountant for Dravet Syndrome Foundation and as a financial analyst at Kennedy University Hospital in New Jersey. When not working, she enjoys volunteering her time, running, and being with her family. She and her husband Jason have three children, including a daughter who has a SCN1A-related seizure disorder.
Misty resides in South Carolina, with her husband Ben and their two children, Braxton and Allie. In 2009 her son, Braxton, was diagnosed with Dravet syndrome at just 15 months old. With very little information given to them by their neurologist, they immediately went online in search of other parents to help educate and guide them in the right direction. After meeting with one of the founders of DSF, Misty knew that one day she would become part of the “Fight for a Cure”.
Soon after, her journey to raise funds for the foundation took off! Between 2010 and 2016 she hosted five events raising over $100,000.00. Her events have included two walks, a golf tournament, a 5K and a Burn-a-thon. Her mission in life is to spread awareness about Dravet syndrome, mentor parents of newly diagnosed children and help raise funds for patient assistance and research. Misty joined the DSF staff as their Steps Toward a Cure Campaign Director in late 2016.
Board of Directors
Nicole lives in Colorado with her husband and three sons, the youngest of whom (age 11) has Dravet syndrome. After studying chemistry and physics at Carleton College and the University of Minnesota, Nicole earned her Master’s of Science Education from the University of Minnesota. She worked in research and development at the University of Minnesota and for a small wet chemistry company for several years before teaching chemistry and physics. She has been using that background to encourage and support parents of children with Dravet syndrome since shortly after her son’s diagnosis in 2008. Nicole volunteers with the Epilepsy Foundation of Colorado, and in her spare time likes to ski, hike, and enjoy the outdoors with her family.
Abby Hemani is a mother of three and full-time attorney. She graduated from Yale University and Harvard Law School, and she currently works as an in-house litigator at Fidelity Investments in Boston. Prior to her work for Fidelity, she clerked for two federal appeals court judges and was a member of the law firm Goodwin Procter LLP. When not working, Ms. Hemani enjoys spending time with her husband, Micah, her seven-year-old twins, Jonah and Norah, and her younger son, Nathaniel. Abby’s daughter, Norah, was diagnosed with Dravet syndrome in 2009, at eleven-months old, and Abby immediately became involved in fundraising for DSF. She joined the board in 2012 and has served as both board President and Vice President.
Tim lives in Marin County, Northern California, with his wife Ashley, their son Owen and twin daughters, Mimi and Piper – who has Dravet syndrome.
Soon after Piper’s first prolonged tonic clonic seizure on December 31, 2006 at 8 months old, genetic testing confirmed a SCN1A mutation. Soon after Piper’s diagnosis, Tim found strength and purpose advocating for Dravet syndrome. His work with DSF is driven by a belief that all those affected by Dravet syndrome may benefit from improved awareness and continuously improving best practices.
Tim is inspired by the collective work of DSF’s Scientific and Medical Advisory Boards, staff workers, volunteers, fundraisers, donors along with his fellow board members and their efforts leading towards life changing research and advancements for Dravet.
When not spending time with his family, Tim enjoys mountain biking, trail running, tennis, skiing and painting.
Jenny lives in Menomonee Falls, Wisconsin, with her husband, son and daughter. Jenny is the mother of three children, a stay-at-home mom, a student, and a volunteer at the local children’s hospital. Jenny’s oldest daughter Maddie, was diagnosed with Dravet syndrome in 2008 and lost her battle with the syndrome when she died in June of 2010, at the age of 2 ½.
Jenny joined the board in 2012 and her focus as a board member is now offering support to parents and family members who have lost a child due to Dravet syndrome. She began her schooling through the University of Wisconsin Milwaukee, working to obtain her license to become a grief counselor. Jenny also works with the bereavement coordinator at the Children’s Hospital of Wisconsin campus. Jenny takes what she has learned on her grief journey to help other bereaved parents. She believes that no parent should have to grieve alone.
Nichelle lives in the Tampa, Florida area with her husband and three children. Her youngest son Logan (2) was diagnosed with Dravet syndrome in April of 2016. Nichelle has a Degree in Business Administration and is Director of Marketing and Project Management for a company headquartered in Michigan.
Nichelle started volunteering this spring shortly after diagnosis. She runs the marketing and awareness campaigns on Facebook, Google Adwords, and assists with the dravetfoundation.org website. In her spare time she likes to ride horses and spend time with her family.
Founder & Director Emeritus
Research Review Contributor
Karina lives in Newton, Massachusetts with her husband Daniel, sons Jonathan and David and twin daughters, Nicole and Natasha who has Dravet syndrome. She holds a B.S. in early childhood education and a B.S in education management. She worked as a preschool teacher and is now a full-time mom. Karina enjoys contributing with DSF identifying relevant research and therapeutics for epilepsy and Dravet syndrome.
Clare chairs DSF’s Fundraising Committee. She is a former physical therapist and originally from England. She now lives in Boise, Idaho, with her husband, Michael, and their three children, Alexis, Calvin and Alanis. Their eldest daughter, Alexis, has Dravet syndrome. In 2008 they attended their first Dravet syndrome conference and it was life changing. There, they met parents who were volunteering their time to make a difference, and families raising funds to support research and awareness. Clare came home from the conference knowing she had to get involved.
In 2009, the Carey family hosted their first walk and it was a fun and empowering experience. In 2011 they had the first Luck Be Alexis Tonight casino night fundraiser which has become an annual event. Clare had been able to spread awareness, meet new families, and raise funds that will make a difference for Alexis and all those who suffer with Dravet syndrome. It’s a very rewarding experience and she is proud to be a part of the amazing work that DSF has accomplished in just a few years.
Leslie and her husband Bert and their two children, Paige and Will, live in Texas. When their son, Will, was diagnosed with Dravet Syndrome in 2010, they had a hard time adjusting to their new life. Finding DSF and planning a fundraising walk gave them a mission. They felt like they had no control over Dravet syndrome and what Will had to endure, but planning an event gave them a chance to be proactive in doing something about a diagnosis with so many unknowns.
They have since found some wonderful families in their area to team with to plan other events. For them, it has been so rewarding getting to know other families in north Texas that are as committed to fundraising as they are. Leslie joined the Fundraising Committee in 2016.
Brenda and her husband Jason have been married for 15 years and live near Chicago, Illinois. Their daughter, Amanda, was clinically diagnosed with Dravet syndrome at 12 months and confirmed genetically at 3 years old. Brenda is in this fight for Amanda and all of her Dravet siblings. In her previous life, she was a computer programmer/project manager.
She has helped coordinate the DSF Steps Toward a Cure walk outside of Chicago for the last 6 years and recently started the Cups for a Cure campaign. She feels that even though there isn’t a cure for Dravet syndrome, we can each help change that by raising money for research.
Dravet Syndrome Foundation recognizes that by opening lines of communication, connecting scientists, and forming partnerships with doctors, researchers, and patient organizations, we can assure rapid distribution of information and avoid duplication of efforts. DSF chooses to partner with like-minded organizations who share our priorities of finding better treatments and a cure, and who share our integrity and values. Through these meaningful collaborations we can have a much greater impact than working alone. DSF welcomes partnerships with other organizations who wish to contribute and participate in projects that are in-line with their mission and which appeal to their supporters. The quickest way to a cure for a rare disease such as Dravet syndrome is through global collaboration.