A Mom’s Journey to Understand Her Daughter’s Rare Disease
November 1, 2021
LGS Foundation offers timely, impactful support programs for patient families navigating the LGS journey.
Tracy Dixon-Salazar knows firsthand the devastating effect of Lennox-Gastaut Syndrome (LGS) — her daughter Savannah developed it at 5 years old as a result of uncontrollable epilepsy, which began when she was 2. Having to do her own research to find answers, Tracy went back to school to receive her Ph.D. to help her understand the books and articles she was reading.
During her studies, Tracy did genetic sequencing on her daughter and found the cause of her unrelenting seizures. As a result, Savannah had a 95% reduction in her seizures and regain the ability to walk and talk. This is not the outcome for most patients, as access to genetic sequencing is limited, the disorder is resistant to most therapeutic options, and no cure exists for patients.
We also traveled to NYU’s Comprehensive Epilepsy Center to meet with Dr. Orrin Devinsky to learn more about the cause, diagnostic features, and what’s on the horizon for research and clinical trials.
Black Friday technically isn’t a holiday, but some would say it is their favorite! The one-day-a-year stores nationwide offer deals on big-ticket items like iPhones, TVs, Clothes, Jewelry, Toys, and much more. If you’re planning on going shopping and haven’t found any good deals yet, don’t panic! We’ve got you covered. Here are a few […]
Star Wars fans had a once-in-a-lifetime opportunity to get their hands on cinema history. Anthony Daniels who portrayed the iconic Star Wars droid C-3PO, sold his personal memorabilia collection. He nearly auctioned off 200 items ranging from props, costumes, and scripts. The big piece of the collection was the head of the beloved character C-3PO. […]
Are you looking to attend a music festival in South Florida? With great weather year-round, it’s a never-ending party atmosphere and it comes with many music festivals geared toward every style of music. You can dance the night away in Miami, the Keys, Fort Lauderdale, or West Palm Beach this year. If this is right […]