Dossier
Name: Shelly
Codename: Mom in Progress
Alias: Shel…Mommy…honey
Interests/hobbies: disability advocacy…golf…historical fiction…gardening…spending time with family and friends
Pet Peeve: run-on sentences
Fears: fear of being trapped
Favorite movie: Fried Green Tomatoes…Hacksaw Ridge…Forrest Gump
Favorite dessert: bread pudding…custard pie
Dream vacation: Almafi coast…African safari…Poland
Biography
Shelly and her husband have been married for 23 years and they have two daughters.
Their oldest is Kinley who is 20 years old. She has cardiofaciocutaneous syndrome (CFC).
Their second daughter is Kami. She has autism, TRIP12 gene variant as well as impulsivity issues, and intellectual delays.
Career
In addition to being a wife and mom, Shelly also works outside the home. She used to be in pharmaceutical sales but has been working for her current employer, a medical device company, for 14 years.
She’s very thankful and blessed to have her job. The company has been a great advocate in helping provide the resources she needs to support her girls. Even if that means providing third party support.
Most of her work day is spent in hospitals working with clinicians. Additionally, she’s also involved with two employee resource groups through work.
One supports women in leadership, specifically in the mid-level, senior level of management. The second is a disability employee resource group. Their goal is supporting those with disabilities in the workplace. This includes mental health as well.
Volunteer work
Outside of the workplace, she was currently appointed by the governor to be a council member for the Developmental Disability Council of Oklahoma (DDCO) formerly called the Governor’s Disability Council. Their mission is to help individuals and families with developmental disabilities.
She used to be a board member for organizations such as the Oklahoma Family Network (2007-2022). They provide support to Oklahoma families who have kids with disabilities, health care issues or critically ill infants.
She also served on the CFC International board for a time. CFC International is a family support and research group. They provide support, education and research for anyone with CFC syndrome.
When the girls were younger she was involved with the Arts Council of Oklahoma City. Whose goal is to make art accessible to everyone.
In addition, Shelly and her husband also support organizations like Tenaciously Teal that provide support to cancer fighters who are currently receiving treatment. And also the Cystic Fibrosis Foundation.
Current projects
Shelly’s currently organizing a Facebook support group for families who have kids with TRIP12 gene variant like her daughter Kami. She was inspired to start this group when she realized there was no support group for families who have kids with TRIP12.
Although it’s in it’s infancy, her goal is to create a place where other caregivers can get together to connect. Much like her daughter Kinley’s family support group, CFC International.
In addition, she’s also working to help create a disability ministry for young adults at a local church.
Passion
Shelly’s passion is disability and advocacy. Her desire is to create inclusive communities where the needs and wants of individuals with disabilities (and their families) are part of the norm. Not the exception. She wants all families have access to proper and adequate help, whether that be medical, educational, physical or mental. Her goal is “to bring the world into disability and to pull her girls out of it.”
The rest of Shelly’s story can be found here: