At 7 months, 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 10 years old and remains a silly, sassy and determined little girl. 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. Although Liv has continued to slowly gain strength, at age 10, Liv lacks true independence or ability to move on her own. Liv still cannot get up from a chair, stand or walk without assistance. She fatigues easily and can't keep up with her friends. Liv still 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 5 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 continues to fund ground breaking proposals to move us closer to giving Liv a better life.

This year we are raising funds to support our first exosuit project.  While we continue to fund gene therapy and editing, small molecule and FDA approved pharmacological agents as treatment therapies, an exosuit would provide immediate mobility benefits for those with NM.  Exoskeletons and suits are an emerging technology for mobility impairment, but no such technology is commercially available

for children.  Motivated by this missing gap in technology, our goal is to amplify the functional independence of children with NM through the development of soft robotic garments that physically assist the lower extremities. The singular goal of the proposed research is to actualize and demonstrate a lower limb exosuit prototype (soft robotic garment) that can provide physical assistance to a pediatric user during sit-to-stand, maintenance of balance, and stand-to-sit actions. Long-term we envision our results to provide foundational technology to realize comfortable, low-cost, high power wearable robots that seamlessly interface with human users, adapting in synchrony to provide continuous ambulation assistance.  Liv will serve as the model for the prototype.  If successful, this suit will enable Liv to get out of and into a chair, bed etc. on her own which she currently cannot do. This groundbreaking development could drastically change Liv's life. 

Please join me in raising funds for desperately needed research! 

See you on a bike!