This year, as I celebrate my 50th birthday, I implore you to join me in raising funds and donating to support Nemaline Myopathy research.

At 7 months, my daughter Liv was diagnosed with Nemaline Myopathy (NM), a rare neuromuscular disease that makes basic life tasks such as breathing, swallowing, coughing, sitting and walking difficult, if not impossible.

Liv just turned 12 years old and remains silly, sassy and determined. Despite her immense challenges, she faces each day with a smile, looking forward to making her brothers laugh, playing with her friends, and doing anything involving the Dodgers.

However, Liv's life is markedly different than most children her age. At age 12, Liv lacks true independence or ability to move on her own. Liv cannot get up from a chair, stand or walk without assistance. She fatigues easily and can't keep up with her friends. Liv needs a feeding tube for some of her nutrition and her oral weakness causes speech difficulties. Liv cannot cough forcefully enough to clear her lungs so a minor cold could be life threatening for her. Life expectancy for those living with NM is greatly reduced due to respiratory complications. This is something we try not to think about often.

After almost losing Liv when she aspirated on a plane 7 years ago, we had no choice but to think about the devastating reality of her disease. Liv worked incredibly hard to regain her strength and continues to work tirelessly through daily therapies. As she gets older, she is more aware of her differences and her frustration with the limitations of her body.

A Foundation Building Strength, the only nonprofit exclusively supporting NM research,  continues to fund ground breaking research to move us closer to giving Liv a better life.

This year, the funds raised will fuel crucial research projects, including an innovative study at UC Riverside focusing on developing a lower limb exoskeleton. Liv is the patient model being used to develop the prototype and just recently met with the lead researcher, Dr. Realmuto. This groundbreaking technology could revolutionize mobility assistance for the pediatric NM community, offering the hope of newfound molibility support. Additionally, your donation will contribute to groundbreaking gene therapy and gene replacement research at institutions worldwide, paving the way for more targeted and effective treatments.

With each donation, we move one step closer to unlocking a stronger future for Liv.

Together, let us usher in a new era of possibility, fueled by compassion, resilience, and unwavering determination.