Skip to main content

HPS Conference theme - Life is a journey

Every year the HPS Family Conference has a theme, and usually there's a theme song. Candice and Crystal Sipe suggested this year's theme song - and the lyrics couldn't be more perfect for the HPS Network. Isn't it funny how sometimes you can find a song that has nothing to do with what you're thinking of, and yet the lyrics match so perfectly? I've been wanting to add a feature to this blog that would allow me to feature audio files - but I haven't been able to find a way to host music without major copyright headaches. So, I can't post the song - but as many of you know, there are ways to find such things online. Check out this song.

Artist: Richard Marx and Donna Lewis
Lyrics Song: At the Beginning


We were strangers
Starting out on a journey
Never dreaming
What we'd have to go through
Now here we are
And I'm suddenly standing
At the beginning with you
No one told me
I was going to find you
Unexpected
What you did to my heart
When I lost hope
You were there to remind me
This is the start
Life is a road
And I want to keep going
Love is a river
I wanna keep flowing
Life is a road
Now and forever
Wonderful journey
I'll be there
When the world stops turning
I'll be there
When the storm is through
In the end
I wanna be standing
At the beginning with you
We were strangers
On a crazy adventure
Never dreaming
How our dreams would come true
Now here we stand
Unafraid of the future
At the beginning with you
Life is a road
And I want to keep going
Love is a river
I wanna keep flowing
Life is a road
Now and forever
Wonderful journey
I'll be there
When the world stops turning
I'll be there
When the storm is through
In the end I wanna be standing
At the beginning with you
I knew there was somebody somewhere
Like me alone in the dark
Now I know my dream will live on
I've been waiting so long
Nothing's gonna tear us apart
Life is a road
And I want to keep going
Love is a river
I wanna keep flowing
Life is a road
Now and forever
Wonderful journey
I'll be there
When the world stops turning
I'll be there
When the storm is through
In the end I wanna be standing
At the beginning with you
Life is a road and I wanna keep going
Love is a river I wanna keep going on....Starting out on a journey
Life is a road and I wanna going
Love is river I wanna keep flowing
In the end I wanna be standing
At the beginning with you.

Comments

Popular posts from this blog

Ratner's Cheesecake

Here's another recipe from Toby! Thanks Toby......and I'll get the others posted soon! Ratner's Cheesecake and plain cookies Ratner's was a Jewish dairy restaurant in the lower East Side of Manhattan. This recipe, from my disintegrating, no longer in print Ratner's cookbook, is the closest I've ever gotten to reproducing the rich, heavy cheesecake my mother made when I was a kid. It's worth the time it takes to prepare and every last calorie. Dough Can be prepared in advance. Makes enough for two cakes. Can be frozen or used to make cookies – see recipe below. 1 cup sugar 1 teaspoon vanilla extract 1 cup shortening 1 teaspoon lemon extract 1 cup butter 2 eggs 3 cups sifted cake flour ½ teaspoon salt 2 cups all purpose flour 1 teaspoon baking powder 1. In a bowl, combine all ingredients with hands. Refrigerate 3 -4 hours, or preferably overnight. Filling (for

The next generation with Hermansky-Pudlak Syndrome

I'm so behind on posting about the trip to Puerto Rico. Since the episode of Mystery Diagnosis on Hermansky-Pudlak Syndrome ran right after we got home, it's been a little busy. These, however, are my favorite pictures from Puerto Rico. I know, not pretty senery etc - but these little guys and gals inspire me. They are the next generation of folks with HPS, and if we keep up the hard work, they will live better lives because of it. They motivate me.

Some good news about Pirfenidone

Below is a press release from Intermune, the company that makes Pirfenidone. They have essentially reviewed the various clinical trials going on, and decided that Pirfenidone is safe and well tolerated. That would pretty much go along with what we've observed in the HPS community as well. We have a few folks that have been on the drug since the late 90s and continue to do well. Of course, as a journalist, I do have to say consider the source - but at the same time, as someone in a Pirfenidone trial, it's good to know. Results of Comprehensive Safety Analysis of pirfenidone In IPF Patients Presented At European Respiratory Meeting - Analysis shows safety and tolerability of pirfenidone across four clinical trials - VIENNA, Sept. 14 /PRNewswire-FirstCall/ -- InterMune, Inc. (Nasdaq: ITMN ) today announced that the results of a comprehensive review of safety data from four clinical studies were presented at the 2009 European Respiratory Society Annual Congress in Vienna, Austria