Readers of FSH Watch may remember Katie Ruekert’s personal story about how she struggled to come to terms with her diagnosis of FSH muscular dystrophy, and how her journey eventually led her to open up about her condition and organize the first Colorado Walk ‘n’ Roll. Now her story has caught the attention of prize-winning children’s book author Lisa Reinicke, who has posted on her blog about how Katie’s story touched her heart:
“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.”
Lisa introduced Katie and Beth Johnston, our Denver-based development officer, to her friend, local TV news reporter Amelia Rose Earhart, who interviewed them live yesterday on 9News. Not only that, Lisa is donating a portion of proceeds from sales of her books to the FSH Society. You can order copies here. Thank you so much, Lisa!
This September 9, Katie and a team of fellow FSH Society members and volunteers will host the second annual Walk ‘n’ Roll at gorgeous Phillip S. Miller Park in Castle Rock. Lise Reinicke will be there with her books and her walking shoes!
We sound like a broken record (for those of you who remember turntable technology) when we urge people to “come out of the closet” about having FSH muscular dystrophy, but we can’t say this enough. We cannot change lives or develop effective treatments and support unless others understand that this is a real condition affecting real individuals. So if you are in the area, be sure to join us on the 9th. If you have friends or family in Colorado, urge them to show up too. As Lisa wrote in her blog:
“My heart is leading me to help raise money for a cure and for awareness to 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.”