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.
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 serves as the accountant and Program Director for Dravet Syndrome Foundation. 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.
Wendy joined the DSF staff in early 2018. She is a former elementary school teacher living just north of Philadelphia, PA with her husband Greg and daughter, Penny. After her family was impacted by Dravet, Wendy became involved with the epilepsy community as a fundraiser and advocate. Since 2015 she’s raised over $100,000 for organizations like the Dravet Syndrome Foundation.
In the volunteer role of Parent Ambassador, Wendy helped to plan and execute the first annual Day of Dravet events for the Northeast Region in 2017 and to lay the groundwork for the Dravet Family Network. As an active member of the Dravet community Wendy is astounded daily by the expertise, compassion, and helpfulness of fellow Dravet families. These heroes are amazingly educated and empathetic as they provide minute-by-minute support to one another. Having known firsthand the sacrifices and challenges newly diagnosed families face, Wendy hopes to provide comfort, resources, and a sense of community to those who are adjusting to their lives as caregivers for a family member with Dravet syndrome.
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.
She joined Compassionate Care NY in 2013, a group raising awareness for patients using or in need of medicinal cannabis in New York state. She currently volunteers as State Director. Prior to this, Kate spent 10 years in the wedding gown industry focusing on production and logistics for companies such as Pronovias, Priscilla of Boston, Reem Acra, and Marchesa. She graduated from the Chicago Academy for the Arts, a performing arts high school, and is passionate about supporting young artists. She lives Westchester County, NY and enjoys exploring the Husdon Valley with her husband and Morgan.
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.
DSF Family Network Regional Ambassadors
The Northeast region contains the following states: Connecticut, Delaware, Maine, Maryland, Massachusetts, New Hampshire, New Jersey, New York, Pennsylvania, Rhode Island, & Vermont.
Beth Fox – Branford, Connecticut
Beth lives in Branford, CT with her husband Matt and their daughter Brenna. Brenna was diagnosed with Dravet Syndrome in 2011 when she was 2 ½ years old. Beth became a stay at home mom in 2010 and struggled for several years with the isolation and constant fear of when the next seizure would strike. She now considers herself a pro (with anxiety) and wants to help other parents by providing support and any insight that may help them on this challenging journey.
Beth is originally from a small town in northeast Pennsylvania. She has a B.S. in Retail Management and worked in the supermarket industry for 17 years. Over the years (BB – Before Brenna) she lived in RI, NJ and MD and worked in NY.
Beth attended her 1st Dravet Syndrome Conference last year in FL and had the honor of meeting Dr. Dravet herself. She has attended the past 3 annual galas and was on the planning committee in 2016. On November 4th, 2017 she will be hosting the 3rd annual “Boogie with Brenna” fundraiser for the Dravet Syndrome Foundation. Beth also runs a local support group for adults and parents with children living with epilepsy through the local Epilepsy Foundation.
Beth is looking forward to connecting with other local Dravet families and is honored to be a regional ambassador.
Wendy Fry – Philadelphia, Pennsylvania
Wendy is a former elementary school teacher turned full-time caregiver and advocate. She lives just north of Philadelphia, PA with her husband, Greg, and daughter, Penny. Penny tested positive for a splice-site mutation of the SCN1A gene in March of 2016 and was diagnosed with Dravet Syndrome a few months later. As an active member of the Dravet community Wendy is astounded daily by the expertise, compassion, and helpfulness of fellow Dravet families. This network is amazingly educated and empathetic as they provide minute-by-minute support for one another. Having known firsthand the sacrifices and challenges newly diagnosed families face, Wendy hopes to provide comfort and resources to those who are adjusting to their lives as caregivers for a family member with Dravet Syndrome in the Northeast Region.
The Southeast region contains the following states: Alabama, Arkansas, Florida, Georgia, Louisiana, Mississippi, North Carolina, South Carolina, Tennessee, Virginia, & West Virginia.
Kimberly Brorson – Fredericksburg, Virginia
Kimberly Brorson resides in Fredericksburg, VA with her husband Bendik, Dravet child Lucy, Amelia and soon to be added to the bunch, twin girls Madeline and Elise. Post Dravet diagnosis for Lucy, Kimberly has taken indefinite leave as a commercial pilot to be a full time care taker for the family. She aspires to not only be the best advocate possible for her own family but to share her experiences and knowledge with newly diagnosed Dravet families to shed some light on this ominous path.
Shannon Cloud – Atlanta, Georgia
Shannon lives in Smyrna, GA (in the metro Atlanta area) with her husband Blaine and their three children. Their oldest child, Alaina, was diagnosed with Dravet Syndrome in 2009 at age 4.
Shannon is originally from Pickerington, Ohio and graduated from Florida State University in 1997 with a degree in Management Information Systems. She recently left a 20 year career in IT consulting to focus more on her family, advocacy and helping others. She and her husband have been advocating for medical cannabis in Georgia for several years on behalf of Alaina and patients with other debilitating conditions.
Shannon and her family have attended all three DSF conferences and have worked with other Atlanta area families to host several walk events to benefit the DSF since 2011. She is looking forward to the opportunity to help other Dravet parents on their journey.
The Midwest region contains the following states: Illinois, Indiana, Iowa, Kentucky, Michigan, Minnesota, Missouri, Ohio & Wisconsin.
Mandee Ordaz – Detroit, Michigan
Raised in the four corners area of NM and CO, Mandee and her husband have been raising their four handsome sons in the ‘burbs of Detroit for the past 14 yrs. Their youngest, Armando (7), was diagnosed with an SCN1A mutation at age two. Connecting personally with local Dravet families lifted a tremendous burden of isolation that was felt during the turbulent pre-diagnosis years and she is excited to help others do the same. Mandee earned a degree in Early Childhood Education from Brigham Young University which she uses every day to convert rowdy boys into gentlemen! She cherishes the poignant lessons Armando has taught her and especially enjoys learning about holistic healing modalities that have helped her family.
The Mountain region contains the following states: Colorado, Kansas, Montana, Nebraska, New Mexico, North Dakota, Oklahoma, South Dakota, Texas, & Wyoming.
Lynne Howard – Rowlett, Texas
After taking time off work to help her family with managing the daily challenges that come along with having a child with DS, she returned to her career as a paralegal on a part-time basis but remains an active member of the DS community. Lynne has a specific interest in advancing DS research and tackling the issue of patient access to emerging new therapies. She and her husband participate in hosting the Double Down for Dravet annual fundraising event in Frisco, Texas and took an active role in grassroots advocacy efforts that ultimately lead to enactment of the Texas Compassionate Use Act by the Texas Legislature in 2015.
Lynne contributes the unwavering support and encouragement she found through the DS community to inspiring and empowering her to regain direction after the emotional aftermath of receiving Elissa’s diagnosis. Her hope is that together our contributions will lead to an impact that changes outcome and prognosis for all of our children and loved ones suffering with DS. And, in that process, help families faced with new diagnosis in a very practical and meaningful way.
Meghan Wilson – Denver, Colorado
Born and raised in NJ, Meghan now lives in Denver, CO with her husband Brian and 2 daughters, Adele (7) and Vivian (5). Vivian was diagnosed with Dravet Syndrome in March 2012; Meghan joined the DSF community shortly thereafter.
Meghan has her BS in Biological Sciences from the University of Pittsburgh and has been working in the pharmaceutical industry for 17 years in various Clinical Operations roles. She is also Vivian’s parent CNA (Certified Nurse Assistant).
Meghan is excited to join the DSF team as a local ambassador, combining 2 of her favorite activities: talking and helping others.
Emily Zeigler – Fort Collins, Colorado
Emily lives in Fort Collins, CO with her husband, two children, and two dogs. Her daughter, Genevieve (5) was diagnosed with Dravet Syndrome at the age of 16 months. With a B.S. in Education, Emily is incredibly fortunate to be a stay-at-home mother. She devotes her time to her family and researching treatments and therapies to give her daughter the best quality of life possible.
Emily knows the isolation that parents can feel with all that comes with the Dravet diagnosis and wants to be a resource and support for other families so no one has to go through it alone. She believes it is essential that families have support and relationships with others who truly “get it” to help each other through the hard times.
The West region contains the following states: Alaska, Arizona, California, Hawaii, Idaho, Nevada, Oregon, Utah & Washington.
Erin Reoyo – Seattle, Washington
Erin lives in Kenmore, Washington (just north of Seattle), with her husband, son, and daughter. Her 3 year old son was diagnosed with an SCN1A-gene mutation/Dravet Syndrome in April 2016, shortly after his second birthday. She quickly got connected with and received online support from other DS families across the country. That summer, she attended the DSF Biennial Family and Professional Conference in Miami, Florida, as well as hosted a local “Superheroes for a Super Kid” fundraiser (and has hopes to make this an annual event). Now, she hopes to be a source of support for other new families as she and her own family continue to educate themselves and navigate all that is associated with Dravet Syndrome.
Erin received her B.S. in Education from New Mexico State University and her M.A. in Communication Sciences and Disorders from Western Washington University. She is Speech-Language Pathologist who works very (very!) part time at a local children’s therapy clinic after having spent nearly 12 years working as an SLP in a local school district. Now, she is turning her attention on how to best advocate for her son and his many Dravet brothers and sisters across the country. When not wearing purple and spreading awareness for Dravet Syndrome and Epilepsy (let’s be honest, she is nearly always wearing purple), she is a baby(toddler)wearer, likes to (try to) read, and is trying her hand at maintaining a Bullet Journal. She and her family cheer for the Seattle Sounders and enjoy adventures around the Pacific Northwest.
Karen Masters Foster – Northridge, California
Karen lives in Northridge, CA with her husband Jermaine and their 3 children, Audrey, Miles and Clover.
Miles was 2 yrs old when genetic testing reviled he had a SCN1A mutation. Though initially diagnosed with GEFS+, at age 4 Miles was officially diagnosed with Dravet Syndrome. From the beginning, Karen knew their road would be difficult. Upon researching online she came across the Dravet Syndrome Foundation and their online support group. It was there she found her voice, along with immense support and fast friends within the Dravet community.
Karen is a licensed life insurance agent and has worked in various aspects of the insurance industry for over 15 yrs. Karen enjoys spending her free time with her family, hanging out at home, hiking, golfing with Miles and shopping at the local flea market.
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.
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.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 first joined the board in 2012 and has served as both Board President and Vice President, prior to being named a Director Emeritus.
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 and then as the Executive Assistant to assist in day-to-day tasks. Upon leaving her staff position, she was appointed a Director Emeritus by the DSF Board of Directors to thank her for her many years of service to the Dravet syndrome community.
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 and is an active member of her Church community, teaching Sunday school and singing in the choir.
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.
Advocacy organizations, medical partners, industry or other parties interested in partnering with DSF should email Mary Anne.