In April 2016, just 6 short years ago, we received the devastating news that our (then) 2 year old son had an SCN1A gene mutation. Later diagnosed with Dravet syndrome, our lives were forever changed. We’ve gone through every emotion and, even now, continue to grieve. With our grief, we also took action and began learning from and fundraising for Dravet Syndrome Foundation. Spreading awareness and raising money to fund research was, and continues to be, of utmost importance to our family.
In 2017, I was invited to become one of the original Parent Ambassadors of DSF’s newly developed Family Network. I felt honored to be recognized for my compassion and leadership and was ecstatic to work alongside fellow parents as we connected with other caregivers and professionals in our community.
Today, as the DSF Family Network Support Group Liaison, I am thrilled to re-introduce our veteran Parent Ambassadors who are continuing their incredible work with our Family Network:
Shannon Cloud- Georgia (Southeast region)
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.
Since 2011, 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 DSF. She is looking forward to the opportunity to help other Dravet parents on their journey.
Karen Masters-Foster- California (West region)
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.
Tina McDermott- Iowa (Midwest region)
Tina lives in Davenport, Iowa, and has a son, Ryan, with Dravet syndrome. She and her husband Brad have been married for 30 years and have been blessed with 5 sons, a daughter, and 4 grandchildren. Ryan, their youngest child, is now 16 and was diagnosed 10 years ago at the age of 6. For Tina, getting that diagnosis was a relief. Although the outcome was devastating, they finally had an answer. Two months post diagnosis, Tina became involved with DSF and attended her first biennial conference. She states she attends conferences because, “there’s nothing better than spending time and bonding with other Dravet families”. Tina appreciates the many advances in research for new treatments, the improved diagnostic tools, and the increase in Dravet syndrome knowledge and awareness that has occured since Ryan’s diagnosis.
Morgan Turpin- California (West Region)
Morgan lives just north of San Diego with her husband Sean and their son and daughter. Their oldest, Shayne (now 10), 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.
In addition to those returning volunteers, this week, it is my pleasure to introduce you to our newest Parent Ambassadors from the Midwest region:
Kayci Capps- Missouri (Midwest region)
Kayci is a stay-at-home mom to three amazing kids, Benjamin, William, and Charlotte. Her husband, Adam, is in the Air Force and they currently live near St. Louis, Missouri. Her middle son, Wi
lliam, was diagnosed with Dravet syndrome at 6 months old after having several seizures lasting from 50 minutes up to 3 hours, thus prompting genetic testing. Kayci began fundraising for Dravet Syndrome Foundation shortly after Will’s diagnosis. She found a connection and support with the other moms in the Dravet syndrome support group and recently found herself on the other side of things, helping other parents navigate this diagnosis. As a DSF Parent Ambassador, she is so excited to immerse herself in helping other families like she has been helped. While she doesn’t have a lot of free time with three kids, she loves to read when she finds the time. She enjoys driving in her purple ribbon-clad minivan listening to 2000s punk rock. She loves skating and wandering aimlessly around Target.
Colleen Murphy Penwell- Wisconsin (Midwest region)
Colleen and her husband, David, live in Madison, Wisconsin and are proud parents to three adult children, one of whom lives with Dravet syndrome. Colleen’s education is in journalism and marketing. In her early career, she worked at public relations agencies in Minneapolis and Madison and had a small consulting firm. A consummate Jane-of-all-trades, her background includes development for various nonprofit organizations and real estate management. Colleen has served on several Boards and has been active with Lily’s Fund for Epilepsy Research through the University of Wisconsin-Madison for many years. She also helped create Girls on the Move Housing Group, which furthers independent living opportunities for adults with disabilities. Her hobbies include gardening, tennis and anything to do with repurposing.
Next week, I look forward to introducing our Parent Ambassadors in the Northeast and West regions. Stay tuned!