A Gilbert woman is chairing the board for a new nonprofit that aims to support caregivers of children with disabilities.
“Illyssa Tussing chairs the board of D.A.M.E.S. Charities, which aims to reduce caregiver burnout and build the resiliency of caregivers of children with disabilities by providing them with easy to access tools that focus on mindfulness, education, and community,” said founder Michele Thorne.
Thorne has assembled a board comprising professionals who work with disabled children – and in several cases are parents of special needs kids.
Tussing is the mother of two special-needs boys and owner of a tech support company called Creative Tech AZ which provides tech support and web design to small businesses around the Valley.
Her oldest son has autism and her second son has a rare disease, RYR-1. These differences allow her to see both sides of special needs children with mental disorders as well as children with physical disorders. This unique dynamic gives itself to many opportunities in the community and experiences which can help others, Thorne said.
It was out of her personal understanding of the challenges moms of special needs children face that Thorne – the mother of two autistic children – founded DAMES, an acronym for Differently-Able Mothers Empowerment Society.
With a bachelor’s degree in genetics and a master’s in science, she had worked at the Translational Genomics Research Institute, or TGen, for five years until she felt driven to quit her career to be with her son and daughter.
The acronym plays off the name of an honorific title given women in Britain and some other countries.
“I was searching for a word that kind of encapsulates moms like me who are out there battling for their kids relentlessly day-in and day-out,” she explained. “These mothers are relentless in their search for care and protection of their children.”
Thorne is active in a number of region-wide organizations such as the Autism Society of Greater Phoenix, but she did not find a group filling the kind of needs she’s trying to meet with D.A.M.E.S.
“There’s nothing out there that really takes care of the deeper self-care mothers really need,” she said.
For example, she said, “It’s really hard for parents who have special needs children to get out and find somebody to watch their kids so they can go to a support group meeting.”
So, she developed an elaborate website, damesusa.com, where they can find the support online.
Stating that “time is valuable to caregivers of children with disabilities,” Thorne said D.A.M.E.S. Charities tries to ease caretakers’ burdens.
“On the D.A.M.E.S. Charities Inc. website, parents will find five roadmaps that will help them navigate Arizona’s systems of care, over 25 educational webinars, 20 tools to help them organize their child’s medical care and eight- to 21-day fitness programs they can do at home, on their time,” she said.
“By reducing caregiver stress and burnout, parents can cultivate a positive relationship with their children and help them get the care they need,” Thorne said, stating D.A.M.E.S. Charities “offers a holistic approach that allows caregivers to connect socially, participate in self-care, and access educational resources whenever it is most convenient.”
As the CEO of D.A.M.E.S. Charities Inc., she plans to continue creating programs, apps, events, and support groups to help parents who are raising children with different health care needs.
A certified autism specialist, Thorne founded the Care for the Giver Conference and created After the Diagnosis. She graduated from the Pilot Parents of Southern Arizona Partners in the Leadership program. She has been trained as a Flourishing Families Practitioner, a Protective Factors Trainer, and as a Triple P Stepping Stones Practitioner. Michele also sits on the ALTCS advisory council, the ICC financial committee and the CPSD Leadership committee as a parent representative.
Dr. Gabrielle Ficchi is chief operations officer for D.A.M.E.S. Charities. The Tucson associate counselor is a certified rehabilitation counselor and is the clinical director at Helping Everyday Youth, working with children to help provide community and school-based treatment programs that address the external behaviors of youth with the goal to help at-risk youth to succeed in everyday life.
Courtney Deeren of Tucson is board secretary and is a licensed associate counselor with a background in child and family therapy and childhood trauma. In 2014, her son was born with a rare genetic disorder called Phelan-McDermid Syndrome and she became his full-time caregiver. Despite her professional and educational background, she found herself lost in navigating complicated systems while also trying to manage her own health.
“It was hard to find anyone who truly understood what her family was going through and what they needed,” Thorne said. “Through this experience, she really began to appreciate the necessity of mental healthcare and community resources specifically for families of individuals with disabilities.”
Also on the board is Staci Neustadt of Scottsdale, a speech-language pathologist for 20 years who focuses on supporting the autistic community. As a certified autism specialist, she has led social groups, provided individual speech and language therapy for kids with a variety of disabilities.
In 2007, she used her experience and research to assist in developing Alexicom Tech’s Augmentative and Alternative Communication apps to assist those with complex communication needs.