My First Blog: August 26, 2009

I wrote my first blog on August 26th, 2009.  it was my humble attempt to create a space and a community where we could keep everyone up to date with our journey with David.  Little did we know David would pass less than two months later.  As we near celebrating ten years of David’s Refuge I thought it would be fun to share my first blog.  If you are new to the David’s Refuge family you will learn a little about David, who is often called the man behind the mission, and why it is still “Well with our soul!”  If you have any questions about our journey and why we started David’s Refuge don’t hesitate to ask!


Welcome Family, Neighbors, and Fans and Friends of David Gregory Pfohl!

For many months now I have wanted to create a place and a community where we can share with you our Journey with David; the good, the bad, the ugly, and the funny! A day doesn’t go by that we are not asked; “How is David?, How are you? Is there anything we can do? How can we help? What exactly is Batten’s Disease?” We will do our best to share with you as honestly and openly as possible. Be warned, there may be days we will be brutally raw and other days you will think we are being flippant about David’s disease. Welcome to our journey.Why the name, It is Well With My Soul? If you open David’s Fayetteville Manlius Year Book you will find the following words under David’s picture, “Whatever my lot Thou has taught me to say, It is well with my soul?” For weeks we had tried to help David chose a quote we could use but David was never satisfied. The day finally came that it was due and David tried to tell his Vision Specialist, Donna Richards, what he wanted to be written. Unfortunately, all he could come up with were a couple of words:

River, Soul & Well

Donna called me and asked if this one of David’s favorite bible verses? Being the seminary-trained pastor that I am I said, “I have no idea!” I encouraged her to Google it. When she did, she found the words to It is Well With My Soul, written by Horatio Spafford. When she got to the line, “Whatever my lot Thou hast taught me to say, It is well with my soul, he yelled, “That’s it, that’s what I want!”

So we want you to know, as we walk this journey together with you that It is Well With Our Souls! We thank you for your interest, your love, your prayers, and your support. We will try to be faithful in updating you. Feel free to pass this on to anyone you like.

If you are interested in learning more about David’s Disease, Battens Disease, please check out The Battens Disease and and Research Association web page.