There’s an innate brilliance in each of us. It lives in the thousands of thoughts and feelings that move through our bodies each day. It comes to life in our expressions and movements. In how we connect with each other, and in the moments and memories we create together.
Neurological conditions can dim this brilliance. They can create barriers that impede our ability to communicate. To move. To remember. Over time, these diseases can rob us of our identities.
Our hope is that through our work in neuroscience, combining new scientific understanding with clinical advancements, we can help preserve the unique qualities that make people who they are.
We’re inspired by those who make the most out of life after being diagnosed with a neurological condition, and their experiences reinforce the urgency of the research we do. We asked a few people to share their stories with us, and hope you find them as inspiring and moving as we do.
MARNI, 24 – LIVING WITH SPINAL MUSCULAR ATROPHY (SMA)
Since being diagnosed with SMA Type 2 at 18 months old, Marni has not let her physical challenges get in the way of her creativity and passion for the arts; she proudly refuses to take “no” for an answer. Now in her mid-20s, Marni is in school pursuing a PhD in art and design, specifically studying how to make screen printing accessible for students living with disabilities. Despite the impact her SMA symptoms have on her muscle strength, Marni is still able to exhibit her independence by applying her own make-up every day and loves sharing her makeup tips on social media. She hopes to one day establish herself as a makeup artist social media influencer and continue to pursue her creative passions despite the physical challenges of her condition.
REESE, 26 – LIVING WITH MULTIPLE SCLEROSIS (MS)
Reese is a passionate and accomplished long-distance runner. After her MS diagnosis in 2015 she was told she would no longer be able to run marathons. Determined not to let MS stand in her way, she worked with her doctor to safely manage her condition and continue running. While Reese has been lucky to experience limited symptoms thus far, she sporadically deals with fatigue, balance issues and trouble with vision. Reese knows that because of her MS, there may be a day when running becomes a hobby of the past and she’s accepted that. In the meantime, she’s focused on living a full life and proud to have kept running as much as she can, even completing a full marathon in 2017. Today Reese continues to put her health first by eating clean and staying active with her family and friends, enjoying activities like nature hikes and taking her dog for long walks.
AVERY, 21 – LIVING WITH NEUROMYELITIS OPTICA SPECTRUM DISORDER (NMOSD)
Before Avery was diagnosed with a rare, progressive disease called NMOSD two years ago, she was a busy college student, managing her coursework, playing the cello, and running track. Despite the challenges she now faces living with NMOSD, she remains passionate about life, and is driven to help others while staying as active as she can. Avery established a foundation and makes custom “hope bracelets” for people facing rare and terminal diseases such as NMOSD. Although Avery finds it difficult to play the cello and continue running, she’s confident about her future and hopes one she’ll be able to play the music she loves again and possibly even become a track coach one day.
JEANETTE, 58 – LIVING WITH HUNTINGTON’S DISEASE (HD)
At 47, Jeanette made the incredibly personal decision to receive predictive testing for the huntingtin gene, at which point she learned she is gene positive and will one day be diagnosed with HD. This choice allowed Jeanette and her husband, Louie, to better plan, prepare and enjoy their life together. Now retired, they find happiness and positivity through their time at home together. For Jeanette, this includes harvesting vegetables like yellow squash and zucchini and planting flowers in her garden, baking cookies and pies for her grandchildren, and redecorating her home—a hobby through which she brings a lifelong love of the beach into her surroundings. Jeanette dreams of new HD treatments that could provide hope for her children and grandchildren who are at risk for the disease.
We continue to follow the science, and invest in research and partnerships to help improve the lives of people and families impacted by neurological diseases.
LEARN MORE ABOUT THESE NEUROLOGICAL CONDITIONS:
SMA: CureSMA, Muscular Dystrophy Association
MS: The National MS Society, Multiple Sclerosis Association of America, Multiple Sclerosis Foundation, Can Do MS
NMOSD: The Guthy Jackson Foundation
HD: Huntington’s Disease Society of America