This #MemberMonday meet Mountain Region Parent Ambassador: Lynne Howard!
Lynne lives in the North Texas area with her husband Elliot, and two daughters Elina and Elissa. Elissa is their youngest daughter, diagnosed with Dravet Syndrome in 2012 after genetic testing confirmed SCN1A gene mutation.
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.