This announcement has been posted on other forums and I want to share it with all of you. For those of you who know my husband you will know this is Ken through and through...
"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"
Glenda
Add to the discussion