Saturday, May 17, 2008

The Tampa Support group says thanks to Ken Patterson for his courageous journey to Washington DC to raise awareness about ALS. Yes the group is actually a little blurry.
Here is a video of Ken Patterson's courageous trip by wheelchair from Orlando to Washington, DC. The video covers Ken present a wreath commemorating all the veterans that have died from ALS. And then he arrives at the Advocacy Day flagship hotel in Washington, DC.

Monday, May 12, 2008

May is ALS Awareness Month- at least in Florida

The ALS Association Florida Chapter

Florida Cabinet Joins the House and Senate in Declaring May to be “ALS Awareness Month”

The ALS Association Florida Chapter is celebrating another advocacy success. The Florida Cabinet soon plans to echo the actions of the House and Senate in proclaiming May to be “ALS Awareness Month.”

Governor Charlie Crist, along with Florida Cabinet members Bill McCollum, Alex Sink, and Charles Bronson, will make the proclamation in a meeting scheduled for Tuesday, May 13 in Talahassee. Association supporters, patients, and caregivers are welcome to attend the short ceremony. Please meet in front of the cabinet meeting room in the Capitol Building no later than 8:45am.

The resolution will dedicate the month of May to educate the public about the devastating effects of Lou Gehrig’s Disease. Cabinet members hope their efforts will aid the fight against ALS, while supporting patient care and biomedical research.

“This resolution is the culmination of a six week campaign. For the first time, ALS will achieve recognition across the entire state and gain distinction in the minds of state legislators,” Dara Alexander, ALS Association Florida Chapter President, said.

The ALS Association thanks Attorney General Bill McCollum for his support of this resolution and ALS Advocate Ed Kourt for his efforts in meeting with state leaders. As a result of this resolution, we anticipate great success in educating the public, increasing funds for research and patient care, and ultimately taking another big step toward making ALS a disease of the past.

What next?

We can only hope that all our emails are still wending their way through the desks of the celebrities. One day we may here that one or more of them picked up the ball and will do a segment on ALS. Certainly we generated a collection of stories that will live on telling of living and dying from an "orphan" disease.

May is ALS Awareness Month but so far the only ones who seem to be aware is the ALS community. I have seen nothing in the print or broadcast media, just emails from MDA and ALSA to me.

Ken Patterson should have completed his tour yesterday. Ken's Rolling Over ALS Tour was a courageous action to put some meaning and muscle into awareness. If you are reading his journal on the tour, at least there seems to be one gaggle of folks out there that know of a lone man in a power chair followed by a van and trailer plastered with ALS awareness ribbons. This gaggle slowed down long enough to give this courageous soul that ubiquitous single fingered salute. I say "right on" Ken and Glenda, you both deserve medals.

Maybe we will see a new path or a new campaign growing out Advocacy Days in Washington DC this week. Just getting some news on the ALS Registry Bill will be a bright light of discovery shining through the darkness of any news since December. There were rumblings that some of our fellow PALS are planning a visit to the offices of Senator Tom Coburn, the single roadblock to the ALS Registry Bill to see if putting a face on the disease and the rage and frustration will somehow break through his erstwhile roadblock mentality, and maybe the presence of 500 or more PALS on Capitol Hill will stimulate the other 99 Senators that Coburn is thumbing his nose to show some guts and bring the legislation to the floor for an up or down vote.

Let's see what we hear and what we see come out of Advocacy Day.

Saturday, April 19, 2008

Ken Patterson Is Rolling!

Orlando Sentinel Front Page Feature

I highly recommend all adding encouraging comments to Ken on the Orlando Sentinel story.

When I watched the national evening news last night, I thought that it would be totally cool and appropriate for ABC News to honor Ken as Person of the Week when he rolls into DC. CBS News does a similar concept story weekly called "Assignment America."

Here's the link to contact ABC News --
Contact ABC News
Select "Contact World News with Charles Gibson" to submit a suggestion to honor Ken as Person of the Week.

Here's the link for CBS News Assignment America --
Contact CBS News Assignment America There is a link there to Submit Your Story to nominate Ken.

This is the perfect opportunity to honor one of our heroes whose whole purpose in this ambitious trip is to raise awareness about ALS. He knows the value of some news coverage, so let's try to help him get some national press! In order to get their attention, I think we need to make the messages short and simple... just enough to tweak their journalistic juices to follow Ken's journey.

Tuesday, April 15, 2008

Keep Posting

We are doing pretty good with number of stories posted. They all fill in the tapestry of living with ALS as each of our lives are threads woven into that tapestry. Keep the stories coming. If anyone hears from any of the celebrities, please shout it loud right here on the blog.

My mother's story-ALS took her life

Our MotherMonday, March 3, 2008 By: Nicole Arredondo .Our mother was diagnosed with ALS in Feb 2006. She had gone for at least a year with symptoms from ALS that when undiagnosed. ALS is hard to diagnose, because it can mimic so many other disease in it's early stages. In Feb of that year she was using a cane and able to move around with no other assistance. Shortly after she was only able to walk using a walker or she would fall. She was unable to hold herself up without assitance. Her speech at that time was beginning to slow down and at times vey difficult to understand. By thanksgiving, she had minimal speech and was completely in wheelchair, unable to move her legs at all and little use of her arms and hands. At the beginning of 2007, my mother lost all of her speech and barely able to move her arm out a little and minimal movement of fingers. In the spring of 2007, we had to insert a feeding tube, because of the dramatic loss of weight she was no longer able to swallow without choking. She had to be assisted in every area of daily living and was not able to move at all on her own or even to communicate. By early summer, she had lost all movement of hands and fingers.Our mother died on September 9, 2007. It is ironic, because that was grandparent's day. She loved her grandson very much. She was his "nanna". I tell this story, because I cannot comprehend some days what she went through or why. I cannot begin to understand what she was thinking or even the pain that she endured as her body deteriorated right before her eyes. She was a beautiful and spunky woman of independence. Always had things done perfectly or worked until it was. She loved with all that she had and made sure that everyone was always taken care of. We love and miss her so much. I will be married in November of this year, she will never see me that day...nor will she ever meet my little babies that I will have. But I will be sure that they know who their nanna was and that they will grow up helping to honor her memory and working to save the lives of those living with ALS and those not yet diagnosed.Thank you for listening to my story. God Bless You All.

In loving memory of my mother-Nicole Arredondo in Lexington KY