ALS

Thirty Six Years or Three Years

Today is my 36th birthday. It also marks three years since my dad lost his battle with ALS. I’m not going to pretend that this blog post contains an amazing message or his highly philosophical. (Spoiler – it’s neither.)

Three years later. On my birthday. Three years later I am still trying to grasp what that means. As a skeptic…as a contrarian…as a non-practicing atheist…I have regularly thought about that day. I have thought about that day for three years. Sometimes I think that it was, all things considered, the best birthday present ever. Other days I think it’s the cruelest joke. Still there are some days that I don’t believe it.

The only thing that I do know is that I will never take anyone for granted. I am fortunate to be surrounded by amazing people. You all are amazing. Don’t forget that.

Rest in Peace, Pops. I miss you. And thank you, Mom. You’ve been so strong and supportive through this crazy journey. Oh yeah…Amy & Brian….I love you’se guys.

Can you spare a dime to defeat ALS?

As you may know, Ken Lempa, my dad, lost his battle with ALS on December 12, 2013 – my 33rd birthday. In 2014 I ran the Chicago Marathon in his honor. This year I will be running it for the 3rd time. My participation as a member of Team ALS is extremely important. The dedicated staff of the Greater Chicago Chapter of the ALS Association has become a second family to me. They were there when Dad was diagnosed, when we were grieving, and when he passed. Their tireless effort in support of pALS (people with ALS) and for medical research is nothing short of amazing.

Please help me raise money to support this amazing organization by clicking on the above graphic.

Can You Spare a Dime. . .To Defeat ALS?

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 withALS (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.

Two years ago 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/ChrisLempa.

Help Me Run the Chicago Marathon

“Fans, for the past two weeks you have been reading about a bad break I got. Yet today I consider myself the luckiest man on the face of the earth.” – Lou Gehrig

Dad and Chris at the New Comiskey

Dad and Chris at the New Comiskey. This was the last live White Sox game we attended.

Short version – I am running the Chicago Marathon in honor of Ken Lempa, my dad. He was a runner and a victim of ALS. Please support my efforts to find a cure for ALS. Donation may be made online (http://webchicago.alsa.org/site/TR/Runs/Chicago?px=3557317&pg=personal&fr_id=10382) or by contacting me (8 lempa 8 (at) gmail . com).

I ran my first official race this past Thanksgiving (2013). It was a fun Pi-K (3.14 miles. . .get it?) that involved a lot of pie. It was also two weeks before my 33 birthday. . .and my Dad’s passing. It was very important for me to run this race for two reasons. First I wanted to make sure that my Dad – a runner up until he could no longer stand on his own – would be able to hear about my first race. The second reason had to do with a memory. The first race that I ever saw my Dad run was a Turkey Trot. I remember that he gave me the sweatshirt from the run. A sweatshirt that I proudly wore for years.

Dad’s two year battle with ALS (Lou Gehrig‘s Disease) ultimately took his life and led to emotional distress for those he knew, but he always made it a point to encourage me. This was especially true when it came to my then new found love of running. He was one of the only people that didn’t laugh when I told him that my ultimate goal was to run a 100 mile ultra-marathon. In fact, his response was to tell me to get a good pair of shoes and drink a lot of water. I now run in top notch running shoes and carry at least 20 ounces of water on every run.

Shortly after Dad died I joined a half marathon training program. I knew that this would help clear my mind and keep me physically active. It worked so well that I then signed up for a marathon training program. Of course if you are in a marathon training program you also need to sign-up for a marathon. It was around this time that I was approached by my good friends at the Chicago ALS Association about joining Team ALS’s Chicago Marathon team. I thought about it for a few days and eventually decided that there was no better way to honor my Dad than to run a marathon in his hometown while fighting to cure the disease that killed him.

A friend recently asked me how I dealt with the pain inflicted on my family by this terrible disease. I told her that I still try to look for the positive aspect of even the most negative situation. I don’t think my Dad would want us to be sad. I think he would want us to enjoy life and do what we can to make the world a better place. Please join me as I support the ALS Association and every individual who has been touched by this awful disease.

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

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.

Defeat ALS! Join Team Lempa

Defeat ALS! Join Team Lempa

Tomorrow marks the two month passing of my Dad, Kenneth Lempa. Last year we were fortunate enough to have him walk with Team Lempa: Walk to Defeat ALS as we rocked it out at last year’s Walk to Defeat ALS. This year we will be walking in his honor.

Can you help us as we raise money to defeat this awful disease? Every penny helps. My mom , uncle and I would also love to have you join our team! Please email me (8lempa8 (at) gmail dot com) if you’d like to walk with us.

You can support us by clicking here: http://webchicago.alsa.org/goto/ChrisLempa2014

How to Join Team Lempa

There are two ways to join Team Lempa as we Walk to Defeat ALS. One is as a Virtual Walker and the other is as a Fundraising Walker.

Step 1 – Go to http://webchicago.alsa.org/goto/TeamLempa

Step 2 – Click on Join Team

Step 3 – Choose either Virtual Walker or Fundraising Walker.

Choose Virtual Walker if you will not be able to attend the actual walk but would like to help us fundraise.

Choose Fundraising Walker if you will be able to walk.

Step 4 – Fill out the rest of the information.

Step 5 – DONE!

It’s that simple. Once you have joined Team Lempa we ask that you help us raise money for the ALS Association. As some of you know, this organization has been extremely helpful for my entire family.

Please contact me if you have any questions. My email is 8 lempa 8 (at) gmail . com (remove the spaces and use the @ symbol).

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

Introducing Team Lempa!

As some of you know my Dad has been diagnosed with ALS. On May 18th my family will be participating in the Greater Chicago Walk to Defeat ALS. I am hoping to raise $1,000 to support the ALS Association and the work they do for individuals and their families that are living with ALS. Please click on this link to make a donation.

My Mom and I also invite you to join Team Lempa. If you are interested, please contact one of us.

More details will be posted on the attached link and as well as on this website. If you are on Facebook, please consider joining Team Lempa on Facebook.

About the ALS Association:

Established in 1985, The ALS Association is the only national non-profit organization fighting Lou Gehrig’s Disease on every front.  By leading the way in global research, providing assistance for people with ALS through a nationwide network of chapters, coordinating multidisciplinary care through certified clinical care centers, and fostering government partnerships, The Association builds hope and enhances quality of life while aggressively searching for new treatments and a cure.

As the preeminent ALS organization, The Association leads the way in research, care services, public education, and public policy — giving help and hope to those facing the disease.  The Association’s nationwide network of chapters provides comprehensive patient services and support to the ALS community. The mission of The ALS Association is to lead the fight to treat and cure ALS through global research and nationwide advocacy, while also empowering people with Lou Gehrig’s Disease and their families to live fuller lives by providing them with compassionate care and support.