This is Jennifer Miller-Smith, a.k.a. Hero Mom. She’s a wife and mother to three beautiful children, Zach, Katie and Madison. While I know all moms are heroes, Jennifer fights daily battles for her two daughters, as both are special needs children. Her oldest, Katie, is diagnosed with Chiari Malformation, a complex brain condition that can cause problems with balance and coordination, and her youngest, Madison, was diagnosed with SMA (Spinal Muscular Atrophy) type II eight years ago, just before Madison’s first birthday.
SMA (spinal muscular atrophy) is a disease that robs people of physical strength by affecting the motor nerve cells in the spinal cord, taking away the ability to walk, eat, or breathe.
Spinal Muscular Atrophyis the number one genetic cause of death for infants. (CureSMA.org)
When Madison was diagnosed, Jennifer decided to spring into action. Her mission became to spread awareness about SMA and to raise funds towards research with the goal of finding a cure. She founded a Cure SMA support chapter here in South Florida to help support local families affected by SMA. She co-founded the Gala Of Hope, an annual fundraising event held in Fort Lauderdale with another mother whose child was also diagnosed with SMA.
With all the talk about how smartphones are isolating people from one another, AT&T asked me to share a story about someone in the community that is using their smartphone device to inspire and for the benefit of a greater good. The #UseIt4Good hashtag and campaign were created for this very reason. In an instant, I knew my Hero Mom Jennifer would be the perfect person to showcase.
Knowing how hard Jennifer works and how she is always on the go between doctor appointments, personal visits to other SMA families, fundraisers and so much more, I asked her about the role her smartphone plays in her daily life and her mission of raising awareness about SMA. “I seriously do not use my laptop or iPad ever. Everything I do is from my phone. I plan the entire Gala from my phone. All fundraising, social media, email/call/text sponsors, make doctor appointments, text doctors, create events, send pictures- everything.”
Social media plays an important role in raising awareness, whether it’s sharing something personal about Madison or promoting fundraising events like the gala, Jennifer explained. “For Facebook, I post on the Cure SMA South Florida Chapter page, the Gala of Hope page, my personal page and Madison’s page. I do it all from my phone.”
The annual Gala of Hope is one of Jennifer’s proudest achievements. “I’m dedicated to Cure SMA and the Gala of Hope because I know that we are close to a treatment and cure. We’ve raised nearly $500,000 through our past four events. I hope that this year’s gala will be the biggest yet so we can fund even more research to help us reach a breakthrough.”
How do you #UseIt4Good?
Here’s a simple way for you to #UseIt4Good: from your mobile device, follow and like these pages and share Jennifer and Madison’s SMA story:
To buy tickets to this year’s Gala Of Hope or learning how you can be a part of it, please click here.
Despite having SMA, Madison is an incredibly bright and active girl. She loves to act, go to school, and swim with dolphins.
(via CureSMA.org) SMA (spinal muscular atrophy) is a disease that robs people of physical strength by affecting the motor nerve cells in the spinal cord, taking away the ability to walk, eat, or breathe. It is the number one genetic cause of death for infants.
SMA is caused by a mutation in the survival motor neuron gene 1 (SMN1). In a healthy person, this gene produces a protein that is critical to the function of the nerves that control our muscles. Without it, those nerve cells cannot properly function and eventually die, leading to debilitating and often fatal muscle weakness.
SMA affects approximately 1 in 10,000 babies, and about 1 in every 50 Americans is a genetic carrier. SMA can affect any race or gender.
There are four primary types of SMA—I, II, III, and IV—based on age of onset and highest physical milestone achieved.