http://rolloverals.org/

Saw this on another site.
Great idea KenSr.


Some of you may know my husband as KenSr from other ALS sites. This
is his plan for getting that much needed media attention for ALS.
Let's hear what you think and please spread the word.

We all think about all the media attention given to AIDS and Cancer,
yet we never see anything about our disease, ALS. No national
spokesperson, not many commercials on TV promoting our cause nor any
famous reality shows donating all of their funds to the ALSA or even
the MDA-ALS Division. Sure, you have Curt Schilling and Mike Timlin,
pitchers for the soon to be crowned World Champion Boston Red Sox,
they only do it locally, in MA. People with ALS need to have someone
bring them to the national limelight, and I am the person to do it.

How do I propose to accomplish this? Glad you asked…(insert
appropriate drum roll sounds here)

Announcing the "Rolling Over ALS Tour". What is that? On April 19th,
the final Florida Walk to d'Feet ALS walk, I will leave Orlando, FL
with my father-in-law riding a bike alongside me, and my wife
trailing behind us in the van to go to Washington, DC for the Opening
session (Roll Call) of National ALS Advocacy Days. Something needs to
be done in dramatic fashion for ALS to get on the map. Lou Gehrig
gave his name to this disease over 60 years ago, and yet it is still
considered an "orphan disease", could it be because of the orphans it
leaves behind. If you believe the estimates of people dying from ALS,
since Uncle Lou died from ALS, enough other have died from ALS to
cover the population of Miami, FL. And I think the estimates are way
off…I think the total would cover FL from I-4 south. The people that
truly know me, know I am not the type to sit around and wait for help…
I go get what I need…and WE need some National ALS attention. This
ride will not be about me getting some media attention thrown my way;
it will be about ALS getting some media attention thrown ITS way.
Sure, I'll go on Oprah if she asks, yet I will not let her make it
about me and my challenges…it will be about ALL people with ALS and
their challenges. Maybe then, we can get something done about the
lackadaisical approach that people have about this non-discriminatory
disease.

Rolloverals.org is the website for the trip. As with any website, it
is in its early stages, it is a work in progress. I will set up an
email list for anyone that wants to keep up with the preparations for
the trip and I will send out emails from the road as often as I can,
and when I get to DC, I will post all of the pictures I take along
the way. I have 22 days to travel 940 miles, I am planning on
traveling about 8-10 hours a day, sleeping in hotels along the way…
and doing it with 2 days to spare. I openly invite PALS, or anyone
else that wants to join in honor of a PALS, to join me through their
towns. Hopefully, the whole ALS Advocacy Contingency can join
together to roll into DC. Maybe then WE will HAVE A VOICE…

Living despite ALS,
Ken P