DSF Family Network – US Regions & Ambassadors
The DSF Family Network is a program for parents in the U.S. that includes regional support groups and Parent Ambassadors. The purpose of these groups is to share local updates regarding doctors and therapy options; to receive information on local events and fundraisers; and to be able to share knowledge about the resources available in your state and region. DSF will host an annual “Day of Dravet” in each region with educational seminars and meetups for families.
To join the DSF Family Network, please click on the registration button below. Each region and the Ambassadors for that region are listed below. Please feel free to reach out to them for questions and support:
The Northeast region contains the following states: Connecticut, Delaware, Maine, Maryland, Massachusetts, New Hampshire, New Jersey, New York, Pennsylvania, Rhode Island, & Vermont.
Wendy Fry – firstname.lastname@example.org
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.
Beth Fox – email@example.com
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.
The Southeast region contains the following states: Alabama, Arkansas, Florida, Georgia, Louisiana, Mississippi, North Carolina, South Carolina, Tennessee, Virginia, & West Virginia.
Nichelle Dominguez – firstname.lastname@example.org
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. Nichelle started volunteering shortly after diagnosis and serves on the DSF Board of Directors. Dravet syndrome can be a very scary diagnosis but the support from DSF and other Dravet parents has been instrumental in finding a path on this journey and she looks forward to helping other newly diagnosed families.
Kimberly Brorson – email@example.com
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.
Jamie McKeon Meriac – firstname.lastname@example.org
Jamie lives in St. Louis, MO with her husband and two children. Her youngest son, Collin (5) was diagnosed with Dravet Syndrome at the age of 14 months. Jamie has a Masters degree in Speech Language Pathology from Appalachian State University. She has spent the last 13 years working in a hospital treating severe traumatic brain injuries and stroke patients. Just this past year, she returned to working full time as an elementary school speech language pathologist.
Jamie has been fortunate enough to attend both Dravet Foundation Conferences, as well as local walks. Collin was diagnosed at Duke University in NC, and is treated by Dr. Laux in Chicago and Dr. Weisenburg at St. Louis Children’s Hospital. She is excited to be participating with the Dravet Foundation as a Midwest Ambassador.
Mandee Ordaz – email@example.com
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 – firstname.lastname@example.org
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 – email@example.com
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 – firstname.lastname@example.org
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 – email@example.com
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 – firstname.lastname@example.org
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.