Please join Amador Yoga for a very special LovLivYoga fundrasier event benefiting A Foundation for Building Stength. All profits will go toward research efforts to cure genetic muscular diseases such as Nemaline Myopathy, for which there is currently no cure.
The event cost is $35 for adults and $25 for children and includes all day yoga classes offered at Amador Yoga with special guest teachers, refreshments and a special event tank.
Inspiration for Event:
Jackson born baby Allison Leigh Allen was born to Shannon and Adam Allen on September 19, 2014 with an extremely rare genetic disease called Nemaline Myopathy. She was born in respiratory distress and was immediately transferred to a hospital with a NICU to sustain her life. She was on CPAP support and a feeding tube before it was determined she would require two surgeries by the age of 6 weeks, one for a gastric feeding tube since she could not swallow on her own and the other a tracheostomy so her breathing efforts could be supported by a ventilator. She spent the first 3 months of her life in the NICU before she was able to come home with her family. Allie requires around the clock care to sustain her unique medical needs. Through a dedicated team of nurses, therapists, doctors and her loving family, she continues to thrive against all odds.
There is cure for Allie's disease. While physical therapy can help her to maintain the limited muscle use she has, there are no currently no treatments that can actually improve her muscle function. There are some very promising research efforts underway in the medical field such as genome editing and precision medicine that could dramatically improve her muscle function. We have faith that one day these research efforts could lead to a breakthrough treatment for Allie. In the meantime, we continue to provide the best life possible for Allie and as a result, Allie is a very happy and sassy little baby.