DSF Parent Ambassadors are fellow Dravet parents and caregivers who have volunteered to help support the Dravet community. From helping to plan and execute events, to fundraising, to supporting the implementation of our programs, our Ambassadors are an irreplaceable part of #TeamDSF. Learn more about our Ambassadors and reach out for support:
The Northeast region contains the following states: Connecticut, Delaware, Maine, Maryland, Massachusetts, New Hampshire, New Jersey, New York, Pennsylvania, Rhode Island, & Vermont.
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 1⁄2 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 others by bringing families together to share ideas and provide support for each other 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 has lived in RI, NJ and MD and worked in NY.
Beth attended her 1st Dravet Syndrome Family & Professional Conference in 2016 in FL and had the honor of meeting Dr. Dravet herself. She has attended the past 4 annual galas and was on the planning committee in 2016. She hosts an annual fundraiser “Boogie with Brenna” to benefit the foundation and has raised over $40,000 in the past 4 years. Beth also runs a local support group for adults and parents with children living with epilepsy through the local Epilepsy Foundation.
Beth is honored to be a parent ambassador and a part of #teamDSF. She hopes and prays that one day a cure will be found for our precious warriors.
The Southeast region contains the following states: Alabama, Arkansas, Florida, Georgia, Louisiana, Mississippi, North Carolina, South Carolina, Tennessee, Virginia, & West Virginia.
Steve lives in Clayton, NC near the capital city, Raleigh, with his wife, Dawn, and two daughters, Eva and Zora. Zora was diagnosed with Dravet Syndrome in 2013 at the age of 4 yrs. Being self-employed has allowed him the flexibility to be a co-parent and strong advocate for Zora. He was a part of lobbying for access to CBD as a treatment option for epilepsy at the NC state legislature. In order to gain the attention of the NC state legislators he also conducted several media interviews as well as became active through social media. Legislation allowing use of CBD for intractable epilepsy in North Carolina was initially passed and amended in 2013. Another result of his efforts to insist on better treatments for his daughter was the opening of a Epidiolex study location at a local teaching university hospital.
Steve has always strived to not let Dravet Syndrome define their lives while still providing the best quality of life possible for Zora. The struggles of coping with all the challenges associated with Dravet Syndrome became isolating. Finding the support that comes with understanding the depth of Dravet was difficult to find even in the epilepsy community. The search for support lead to the Dravet Foundation. The knowledge and experience found through the Dravet Foundation became very empowering. Steve found that the genuine interest shared by its members is uplifting and wanted to be even more involved.
Steve and his family attended the 2018 Dravet Foundation conference in Colorado for the first time. The sense of understanding and support was inspiring. He hopes to be an advocate for the Dravet community and a real support for those affected by Dravet Syndrome in his area. He hopes to be a model that life with the challenges of Dravet also has an abundance of rewards.
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.
Bob and Kathy live in a suburb of Chicago with their 2 daughters, Cameron and Stacy. Stacy, now age 20, had her first seizure in January 1999 and was diagnosed with Dravet Syndrome in August of 2006. Like so many families, Stacy has endured hundreds of seizures, too many trips to the Emergency room, lots of failed epilepsy medicines and many other challenges due to her repeated seizures. Stacy’s determination and strength through all of this, has motivated us search for a cure for epilepsy. We attended our first Dravet Conference in August 2006, when the Dravet Foundation at that time was referred to as the Idea League. Since then, we’ve attended many other conferences. However, we will never forget our experience attending our first Dravet Conference as we felt such comfort in meeting so many families struggling with the same things we were, but also overwhelmed by the stories of every family and the difficulties they each endured. Because we have lived this journey for over ten years, we are excited to share our experiences with others. We understand this journey can be very lonely, isolating and overwhelming and we are here to help families in any way, even simply providing an ear to listen or a shoulder to cry on.
Tina and her husband Brad have six children, their youngest Ryan was diagnosed with Dravet Syndrome in 2012 at the age of six. Through fierce advocacy Tina was able to get Ryan the testing he needed to see the proper specialists, confirm his diagnosis, and remove him from contraindacated medications. Tina has attended many DSF events including Family and Professional Conferences where she had the honor to meet Dr. Dravet and hear professionals such as her son’s own neurologist speak. She has also participated in Iowa Seizure Smart Conferences and Day of Dravet Family Workshops. She’s been a strong advocate for medical cannabis since 2013 and have been in the paper and on the news several times to advocate for cannabis and Dravet syndrome. Tina is familiar with many of the challenges our families face, such as participating in necessary clinical trials. She remembers how alone she felt before discovering the Dravet community and hopes to share her knowledge and passion with families in the Midwest region as we all work together to find better treatments for our loved ones.
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, 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.
The West Coast region contains the following states: Alaska, Arizona, California, Hawaii, Idaho, Nevada, Oregon, Utah & Washington.
Karen lives in Northridge, CA with her husband Jermaine and their 4 children, Audrey, Miles, Clover and Scarlet.
Miles was 2 yrs old when genetic testing revealed he had an 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 16 yrs. Karen has lived in the Los Angeles area all of her life. She enjoys spending her free time with her family, hanging out at home, hiking, golfing with Miles and shopping at the local flea market
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.
Morgan lives just north of San Diego with her husband Sean and their son and daughter. Their oldest, Shayne (now 6), was diagnosed with a mutation in the SCN1A gene when he was fourteen months old. It would take another ten months before he would officially receive a diagnosis of Dravet syndrome. When he was three Morgan decided to join the online DSF Facebook support group, and over the years she has enjoyed developing relationships with other Dravet families spread across the globe.
Morgan earned her B.S. in Biology from the University of California, Irvine. After graduation, she went on to become a licensed Clinical Genetics Molecular Biologist, and the company she went to work for was the same one who would perform her son’s genetic testing years later. Her background in genetics has been a huge asset as she navigates the complicated world of Dravet syndrome. When she is not working she enjoys writing about the challenges of raising a child with a complex medical diagnosis, and has published multiple pieces for the online disability site The Mighty. She also enjoys outings with her family to explore all of the things Southern California has to offer- with favorite spots including Legoland, The San Diego Zoo and Safari Park, and Disneyland.
To join the DSF Family Network, please click on the registration button below: