Posted October 25, 2021
Dear friends, family and loving supporters,
We wanted to share something exciting with you. This Monday, October 25th, our family will be featured in a show called The Balancing Act on The Lifetime channel. As a part of the show, there is a segment called “Behind the Mystery”. Lifetime contacted EBRP to ask if EBRP would be willing to share more about EB on their television segment. Our family was honored to be asked to share our story.
Here is a little bit about Behind the Mystery found on Lifetime channel’s website:
“As a specialized, recurring segment devoted to rare and genetic diseases, Behind The Mystery highlights the emotional, scientific, and medical aspects associated with rare and genetic diseases. We clarify the often-complex issues by offering easy-to-understand explanations from top experts in the field. Our goal is to expand awareness for rare and genetic diseases through partnerships with pharmaceutical and biotech companies while giving voices to the patients, families, and advocates affected via our national television platform.”
The Balancing Act is hosted by Montel Williams, who was diagnosed with multiple sclerosis in 1999.
If you watch live tv or have a DVR, the show will be on The Lifetime Channel on Monday, October 25, 2021 at 7:30 EST.
It also happens that October 25th is the first day of “EB Awareness Week”. What a way to kick it off!!
Please share with friends, and keep doing what you do for us. I ask also for continued prayers. Brady is doing well overall. Time is flying! There are such momentous milestones that we never thought possible. But there are also parts of his body that continue to wound and scar, as the disease progresses.We ask for prayers particularly for his left hand, where there is more scarring that is pulling his fingers inward and causing him to lose dexterity. Watching the disease take over his beautiful hands and not being able to do anything about it, is downright torturous. But we are surrounded by love and prayer. And it truly lifts our burden!
Thank you all, and we cannot wait to share our story next week!
—
Joy!Eileen