Lower and slower, but still moving!

Today we head to Helena to testify on  Senate resolution to support Federal government funding of ALS research, among other things.  A mere three-hour road trip to the capital city, then three more back again.  Still, one thing I still have is a voice, and I need to use it when necessary to evoke action.

It's a blustery day.  Gotta get going...a shower and dressing takes an hour when I am moving well!  Sheez.  Patience was never my strong suit.

It's evening now and we're at the Celtic Cowboy in Great Falls.  Testified.  I will copy the text below. The Senate committee unanimously passed the resolution.  Now it goes to the Senate floor for two readings.  Transmittal is this Friday; if the Senate passes it, the resolution goes to the House for the same treatment.

The chairman of the committee, a Republican, has a son who has ALS.  He was diagnosed at 24, and has had it 2-1/2 years.  My heart breaks when I hear of young people with this disease.  I don't bemoan my condition, but we have to find a treatment or cure for these young people with ALS.

ALS Testimony

  Thank you for considering this joint resolution.  ALS is a devastating disease: physically, emotionally, and financially. We personally are fortunate to have the ability to withstand the emotional and financial toll, because of the strength of our family and network of friends and very good insurance, but there is nothing currently available to change the ultimate progression of the disease. Other PALS have far less resources to deal with ALS.  No treatment.  No cure.  As you heard and read, the vast majority of PALS die within 2-5 years of diagnosis.  I am at 18 months, and my goal is to live to see our 14- year old daughter graduate from high school in 2018, but I am betting against the odds. 

ALS has no known cause.  The bitter irony of this disease is that most often it strikes active, otherwise healthy, even athletic people,  

While I still have a voice--literally, a voice--I need to express support for this resolution.  In Havre alone at least two community leaders have died from ALS, and four currently are affected by it to varying degrees of progression. By establishing May 2015 as ALS Awareness Month in Montana, you will help bring this disease into the light.  Your call to the federal government to fund research into finding a cause, securing treatment, and ultimately, hopefully, a cure will speak for the many Montanans with ALS.  I likely will not live to see treatment or a cure, or reap any benefit from them, but we need to strive forward.

Please pass this resolution out of committee and send it the Senate floor.

Thank you.