We all live a life that can never be fully conveyed through social media – a world we see daily that cannot be shared or adequately described through five second sound bites or a quick snapshot. These moments are felt and lived, not shown and told.
I give you countless examples and observations, but I know I always fall short in my depiction. At the end of the day, all I have is a promise to myself and my daughter. It’s easy to tell myself I’m doing enough, and I am in the normal world, but nothing about our journey is “normal.”
We must push forward and harness the scientific possibilities for treatment beyond clinical trial drugs and therapy. We are growing Katherine’s stem cells and raising money to fund NUBPL research. Advances are being made daily and we need to fuel it. This is what I mean by not giving up.
I fight a daily battle on the home front, which is mighty enough, but there’s a larger war beyond our doorstep that, if won, can ease the struggles of all of our personal fights.
This is what #Hope4KB means to me.
February 29th is Rare Disease Day 2016 – just 55 days away. Each year we try to do something special to raise awareness. Last year we sold #Hope4KB t-shirts and asked that you wear them on Rare Disease Day. We raised $2700 for rare disease.
Our $1 challenge for 2016 is simple:
- SHARE this post; and
- Challenge yourself to donate just $1 (or more) to one of the following: Hope for Katherine Belle or The Spooner Girl Foundation. Our daughter’s disease is called NUBPL and has been linked to Parkinson’s Disease. (Click here for the full bio of lead researcher, Dr. Virginia Kimonos.) All donations will directly go to NUBPL research, treatment, and hopefully, a CURE! It is amazing how much can add up if everyone gives just a little.