Lou Gehrig

On Government, Insurance Companies, and ALS or #NoWhiteFlags

Steve Gleason has done a lot to bring attention to Amyotrophic Lateral Sclerosis (ALS, Lou Gehrig’s Disease). Please read this letter that he wrote to his congressional delegation. Living with such a debilitating condition is not easy. Government and insurance companies have the ability to make it just a little bit easier. Unfortunately they usually do the exact opposite.

An Open Letter to Louisiana Senators and Congressmen:

Dear Senators Landrieu, Vitter and all Louisiana Members of Congress,

Recently, legislation was introduced to ensure patient access to quality, complex rehabilitation technology. An example of that technology is my power chair. I cannot imagine living with ALS (or any other physically restrictive disease) without a power chair. It is not only a necessity, it is a means of independence for me and my caregivers. The bi-partisan legislation introduced is S. 948 and HR 942. While every organization that supports the care of people with physical limitations supports this, not one legislator from Louisiana has signed it as of today.

Adding to this, the Centers for Medicare & Medicaid Services (CMMS) have new rules which become effective April 1st. Exactly the opposite of the legislation above, these superfluous rules will inhibit people from having consistent access to essential communication devices. The term essential is not hyperbole. I use my eyes to type on one of these devices. Essential communication; from requests for food or water, to telling my family I love them, advocating at the United Nations, or open letters to policy makers.

While I am very fortunate to have the ability to own and customize my equipment, most people who are dealing with ALS, and conditions like ALS, do not. Living with a physically debilitating disease is not only a tremendous emotional burden, but a financial one as well. By taking away access to these devices, the CMMS is harming the very people the institution was created to help.

Imagine if your cell phone, tablet and laptop were taken away when you had a hospital visit. While it is logical to rent “simple” machines like a car or a pressure washer for periods at a time, renting complex and customizable technology like a cell phone, tablet or laptop is far less viable, especially when that technology is your only means of connecting to the world.

I was recently in a Microsoft commercial. The commercial shows how transformative technology has been to individuals and the world. Microsoft calls these technologies “empowering”. These new rules from the CMMS will quash the power that technology gives people like me… people who intend to be productive and purposeful.

Please sign S 948 and HR 942. And, please introduce immediately an exclusion for Speech Generating Devices (SGDs). Thank you for your attention to this important issue and for your voice in Washington, DC. Through your support, you will also safeguard the voices of thousands of others.

Steve Gleason

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Walkin’. . .yes indeed I’m walkin’!

Defeat ALS! Join Team Lempa

On December 12, 2013 I received a phone call from my mom while my co-workers were wishing me a happy 33rd birthday. My Dad had lost a 2.5 year battle with ALS (aka amyotrophic lateral sclerosis; Lou Gehrig’s Disease). While his passing wasn’t unexpected, we didn’t think it would happen on my birthday. Needless to say I hopped in my car and started driving. And driving.

This trip was nothing new -hell I once road a 125cc scooter from Lawrence, KS to Chicago – but it was different. It was both longer and quicker. Further and shorter. Multiple text messages from my brother reminded me to be safe while at the same time telling me that I needed to get home sooner. Rachel checked in to make sure that I was OK as did a few of my closest friends. Gaslight Anthem’s ’59 Sound was on repeat.

The drive itself was mostly a blur. I do remember laughing and crying as long lost memories formed a mental collage. When I arrived in Berwyn I was greeted by my Mom and brother. We hugged, laughed, and cried.

Three months later it is still hard to believe that our family of five is now a family of four. This experience has both weakened and strengthened us as a family. I am grateful for my friends and family that supported me throughout this ordeal and have checked in on me afterwards. I might not always say it, but I love and appreciate you.

I am also extremely thankful for the ALS Association Greater Chicago Chapter. Without them I don’t know how we would have made it through this ordeal. They provided equipment, guidance, and emotional support. Additionally the ALS Association also supports research to fight ALS and discover a cure.

Last year I captained the top fundraising team in the Walk to Defeat ALS. This year we have reformed Team Lempa and are again raising money to find a cure to this horrific disease. You can support us by clicking here: http://webchicago.alsa.org/goto/ChrisLempa2014

PS – I will be participating in a number of runs throughout the year. I will use these runs to raise money for the ALSA and to raise awareness of this horrific disease.

Team Lempa = Results!

The ALS Association is one of the most committed organizations I have worked with. This is one of the reasons that I am proud to be a participant in the Walk to Defeat ALS. One of the questions that people have when they donate money is “where does it go?”

That’s a mighty fine question!

Here’s a rundown of what we are raising money for:

  • Local Care Services: for people and families touched by ALS. These services include equipment loan closets, multi-disciplinary clinics, support groups, home visits, and educational materials.  

  • Research: programs across the world committed to finding effective treatments and a cure for Lou Gehrig’s Disease. Our diverse research studies have advanced new discoveries and treatments, and have shed light on the complex genetic and environmental factors involved in ALS.  

  • Public Policy: efforts that change current legislation to provide greater federal support to those with ALS. Current successes include increased veterans benefits, 24-month Medicare waiver, the creation of the National ALS Registry, and research funding by the Department of Defense.

A future post will out line how a donations of $1.00 will directly benefit a person living with ALS.

Please take a moment to support Team Lempa as we Walk to Defeat ALS! You can even be a virtual walker!

#NoMoreWhiteFlags