Increasing Awareness of Spinal Muscular Atrophy (SMA)

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After a picture perfect pregnancy, our first child, Gwendolyn, was born on October 4, 2007. She had big blue eyes, passed all newborn screenings with flying colors, and we proudly took her home to begin our new life as a family. At nine weeks old, we began to notice Gwendolyn wasn’t reaching out for toys and she started fussing through feedings. First time parent worries, we thought.

Gwendolyn NewbornWe met with our pediatrician for a routine check-up and mentioned our concerns and were instead immediately hospitalized. That morning, before the doctor’s appointment, Gwendolyn had been smiling and mimicking sounds, but by that night she was having difficulty breathing. It would take months to get an official diagnosis but, just before her six month birthday, we received the devastating news that Gwendolyn had Spinal Muscular Atrophy (SMA) Type 1 — a degenerative, neuromuscular disease (much like ALS) that is the #1 genetic killer of infants. Regardless of how long, our time with our beautiful baby girl would be tragically limited – it would never impact her bright mind but before it took her life, it would take every possible muscle movement, including her bright smile.

This is SMA:

* SMA is the #1 genetic killer of infants and young children

* SMA is degenerative, eventually hindering the ability to walk, stand, eat, speak, breathe, swallow…while the mind is never impacted

* 1 in every 40 people carry the gene responsible for SMA. Few have any known family history

* Carrier testing is available to all couples planning a family but it must be requested

* There are care options, but there is currently no treatment or cure

We had never heard of SMA and after Gwendolyn’s diagnosis we spoke with every specialist across the country in the hopes that one would offer something — anything — to change the dire prognosis. They each said the same thing: “No treatment, no cure” and we quickly learned that we didn’t have much time to come to terms with her diagnosis.

We celebrated Gwendolyn’s six month birthday in the hospital beginning the limited medical interventions possible for her condition in the hopes of keeping her healthy for as long as we could. She had surgery to place a permanent feeding tube, began daily respiratory treatments, and started wearing a breathing machine. Our entire world came crashing down and at just six months old we nearly lost her — several times. But, Gwendolyn being Gwendolyn, smiled through it all. She greeted each new doctor (and there were many) with a sly smile and a gentle touch. And we held on to every single one of those smiles with all our might, drawing courage from our tiny baby. With her new feeding and breathing assistance, she regained strength and after a month in the hospital we were able to take her home — this time to begin our new life and journey with SMA.

It was during those difficult first few months that Gwendolyn showed us how very determined and spirited she is. SMA has now made Gwendolyn severely physically disabled. And while she is unable to walk, sit-up, eat, breath or speak independently, she makes it very clear that SMA isn’t going to stop her from living her life to the fullest. Gwendolyn is now a proud second grader in a mainstream classroom where she is excelling. She is an avid reader and a social butterfly and her favorite activities include dancing hip-hop and being a typical silly seven year old. She is also daredevil and loves anything that lets her go fast. In fact, she is soon running her third half marathon – with the help of her dad pushing her.

Gwendolyn’s grit continually inspires and brings out the best in people. It is her fierce determination that spawned the Gwendolyn Strong Foundation and our NEVER GIVE UP. slogan. After being told, “There is no treatment, no cure, just love your baby for as long as you have her,” we felt helpless and defeated. But how could we do nothing? If Gwendolyn can persevere with such positivity in spite of all she faces, so too can we. We soon formally founded the Gwendolyn Strong Foundation to fight alongside all those facing this brutal disease and turn a challenging situation into positive change.

Our NEVER GIVE UP. nonprofit apparel brand is a positive, inspiring way for people to support what we are doing and get involved in the SMA cause through purchasing our trendy, motivating NEVER GIVE UP. merchandise. Hats, t-shirts, running gear…there is something for everyone because everyone has a reason to NEVER GIVE UP. And every single penny funds our unique programs.

What We Have Accomplished

* Research: Funded 11 unique SMA research programs; a gene therapy program we funded is currently in human clinical trials in the US

* Emerging Investigator Awards: Started a unique research grant challenge focused on encouraging new ideas and supporting fresh research approaches to the SMA puzzle

* Gwendolyn Strong Foundation Research Scholarship: We provide targeted funding for SMA researchers focused on putting more dedicated hands in the lab

* Awareness: We’ve reached tens of millions around the globe through our unique social media campaigns

* Media: Gwendolyn, SMA, and the Gwendolyn Strong Foundation have been featured in nearly 100 stories including Today.com, NBCNews.com, New York Times, NPR, TechCrunch, LA Times, LA Daily News, Huffington Post, Consumer Reports, PerezHilton.com…

* Project Mariposa: We’ve granted 205+ life-changing iPads to those with SMA, making the world more accessible to them

* Say Hi! AAC: We created a FREE iPad application that helps those with SMA and similar conditions “speak” using the iPad without having to touch the iPad screen; over 100,000 worldwide are using this app

* Cottage Children’s Hospital iPad Grants: We granted 10 iPads to our local children’s hospital to make every kid’s stay in the hospital a little easier

* NEVER GIVE UP.: We created a unique, positive nonprofit apparel brand to inspire new people to join us in the fight to change SMA

* Legislation: We worked closely with our local Congresswoman who co-wrote the NPRNA, which was signed into law by President Obama in 2013

* Advocacy: We topped 100,000 signatures through our petition in support of SMA legislation

SMA is devastating; there is no way around that. It has turned our lives upside down and backwards. In pouring our energy into giving Gwendolyn the full life she deserves and in working to change the future of this brutal disease, we find a sense of purpose in the heartache. Join our NEVER GIVE UP.

– A message from Bill and Victoria Strong, Gwendolyn’s parents

To learn more about SMA, donate, or purchase motivating NEVER GIVE UP. merchandise to support our cause, please visit NeverGiveUp.org. Be sure to follow along with the Gwendolyn Strong foundation on Facebook, Twitter and Instagram!

 

 

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