I am partnering with FSHD for their 2nd Annual Walk & Roll to Cure FSHD in Castle Rock, CO! It’s a fun event to help bring awareness to FSHD. You might ask what is FSHD? It stands for facioscapulohumeral muscular dystrophy. FSHD gets its name from the progressive loss of skeletal muscle, noticeable in the facial (facio), back (scapula), and upper arm (humeral) muscles.
This is a great event to come out and bring the whole family to. It’s a 3 lap walk around Phillip S. Miller Park on September 9, from 9 am to 2 pm. They’ll have food trucks, a bouncy house, face painters, balloon artist, a silent auction and live music from Chainsaw Rodeo!
After meeting Katie and her children, I am feeling humbled, grateful and inspired. This family’s attitude and life have inspired me to help spread the word about FSHD.
Katie met me with her smile and positive outlook, explaining to me her life with FSHD. FSHD is in short terms, the most common form of Muscular Dystrophy. At first look, you don’t see anything uncommon about Katie until she explains the disease.
Her smile is beautiful, but it cannot reach its full potential due to the muscles in her face deteriorating. One arm cannot be raised to fix her hair. Her boy’s demonstrated how they help her hold her arms up in the mornings to get her ready for the day. For them it is not a chore, it is a joy to be able to help their mama.
FSHD causes the facial, shoulder, abdominal, and leg muscles to deteriorate over time. It is a hereditary and progressive disease. Many affected can no longer walk or even close their eyelids.
I am humbled by Katie’s positive outlook. She didn’t know how she was going to find the energy for fundraising events, but she just keeps moving. I am grateful that I met her and her family. I feel inspired by her determination and positive outlook.
My heart is leading me to help raise money for a cure and for awareness of the disease. At the end of life when it is said and done, I want there to be footprints that lead somewhere. Maybe they can lead to a cure.