2023-August-18

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Giving Back to My Rare Community

BY ASHLEY HAMIC · BUSINESS OPERATIONS MANAGER · UNITED STATES

WITH HELEN GALL

4 MINUTE READ · 6 MINUTE LISTEN

I’ve been a Cisco employee for 17 years. When Cisco introduced Time2Give in 2015, I was pumped about the opportunity to use the time to help others.

I love to sew, so I immediately looked for ways to put that skill set to use. While I found opportunities, including quilting blankets for Meals on Wheels, I knew I wanted to do something more near and dear to my heart.

In 2015, my son Maddox was born. Maddox has CTNNB1, a genetic disease so rare only 430 people in the world have been diagnosed with it.

CTNNB1 is a rare neurodevelopmental disorder. Due to a loss of function in that gene, these beautiful children are not producing enough of a protein called beta-catenin, which affects all aspects of cell development and growth.

Our kids experience a range of symptoms ranging from eye/vision disorders, movement disorders, speech disorders, feeding difficulties, intellectual disabilities, autism, seizures, and more.

Becoming Maddox’s mom meant I was now part of this small but mighty rare community. Because the medical community still doesn't know much about CTNNB1, it can't offer much-needed support, so connecting with other CTNNB1 families is essential. We learn from each other's experiences, ask each other questions, and find hope in our children’s progress.

I have met so many amazing people on my journey. Learning about their stories and obstacles made me want to give back to this community.

In November of 2021, I was approached by my friend and fellow CTNNB1 mom, Effie Parks. Her “Once Upon a Gene” podcast explores the world of raising children with disabilities and rare genetic disorders, her life as a rare mom, useful resources, and other rare stories shared by others.

Effie asked me to create something to keep her son, Ford, dry on their drizzly Seattle walks. Ford has one of the more severe cases of CTNNB1: He is in a wheelchair, is mostly nonverbal, and has difficulty controlling his limbs.

I worked with my amazing manager, and we determined I could use my Time2Give for this endeavor. I had finally figured out how to use it and give back directly to someone in my niche community.

Based on Effie’s challenges, I designed a waterproof wheelchair blanket for Ford. It has special features to help secure the blanket to Ford’s constantly moving body, allowing him to stay warm and dry during their walks.

After creating this blanket for Effie and Ford, the community reached out with interest. I have made more of these blankets for other special families. I have also expanded my product portfolio to include more of my unique creations like waterproof wheelchair seat covers and sensory stuffed animals.

I’m grateful to work for a company that provides hours that have allowed me to combine my passion for sewing and giving back directly to my rare community.

At Cisco, we also have two amazing inclusive communities that have helped me embrace my role as a rare mom and advocate: The Special Children’s Network and the Connected Disability Action Network (CDAN).

Within these communities, people celebrate the strides made towards accessibility for people with disabilities and accomplishments within the community. They can ask questions, share experiences, answer Cisco-specific support questions around medical insurance and in-network doctor/therapist recommendations, and share experiences with schools.

It is so helpful to have a support system where others just get it. They truly understand the struggles and are eager to cheer you on and help any way they can.

I also established CTNNB1 Connect and Cure to the Cisco Matching Gifts Program through the Community Impact Portal. Now, employees can make their donations go twice as far to support this rare community. If you are passionate about an organization and want Cisco to consider adding it to their matching program, you can nominate a cause in the Community Impact Portal.

I hope my story has inspired you to think outside of the box and explore meaningful, fulfilling ways to use your Time2Give hours to make a difference in your community.

Please take another look at the different Cisco Inclusive Communities available. There might be one that calls to you that could greatly benefit from your participation.

How will you utilize Cisco’s many resources to make the world a better place?

Related Links

• Learn more about CTNNB1
• Listen to Effie’s podcast "Once Upon a Gene"
• Cisco Community Impact
• Cisco Inclusive Communities
• Employee and Family Assistance Program

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