Jenny Hasenjaeger
I’m a words girl. When I was little, I talked pretty much nonstop (kind of expected my family members to only have one ear each). I talked myself TO sleep, talked IN my sleep, and according to my brother whose room was next to mine, even wrote headlines and sang in my sleep.
Yes — this Midwesterner is a words girl, and my Bachelor of Arts in English, journalism minor and public relations emphasis fanned the flame and led me to a variety of jobs also fond of words.
Today, I’m a website specialist, and my hobby is songwriting (a space in which my husband says is my “happy place”).
In my world of words, my facioscapulohumeral muscular dystrophy doesn’t get to get the better of me. And I’m looking forward to the day — and that day is getting close — when I will be able to write the headline (while awake AND in my sleep): FSHD gets the boot!
In pursuit of giving FSHD the boot, I count it a privilege to be an ambassador for MyFSHD and to work together with the all-volunteer MyFSHD team to educate people about the disease, to help support those on the journey (with me) to treatment, and to spread the word about the research test that can show people their FSHD status — wherever they are and at no cost to them.
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