Saturday, May 17, 2008
Monday, May 12, 2008
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.”
, along with Florida Cabinet members Bill McCollum, Alex Sink, and , will make the proclamation in a meeting scheduled for 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.
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
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
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.
In loving memory of my mother-Nicole Arredondo in Lexington KY