Join us as we talk to Hannah Lowe, founder of the L-CMD Foundation, and mother to Austin, who has LMNA-related congenital muscular dystrophy. Like many rare disease families we’ve talked to, her son’s condition was caused by a random genetic mutation. There is no treatment or cure, and given how rare it is, they are unsure about his prognosis or life expectancy, making the mission even more urgent. The L-CMD Foundation that she started is inspiring hope for a stronger tomorrow by seeking treatments and, ultimately, a cure. We talk about balancing grief with action, and Hannah exemplifies this in her graceful and determined approach to save to her son.
We talk about:
*Living life on the severe end of the spectrum of rare disease
*Using the road map created by other parents to work toward finding treatments and cures
*Trying to live in the moment while working toward a cure
*Figuring out what they can, when they can do and how they can pay for it
*How people show up when we need them
*The grief and how it stays with us
Links
Find the L-CMD Foundation on Instagram
Book - Longing for Certainty