How ALS Has Affected My Life

This post is a charitable effort to support the ALS Therapy Development Institute and it is not sponsored or paid for.

Hey friends!  I’m here today to do my own small part in raising awareness and helping to support the ALS Therapy Development Institute.  Do you know what ALS is?  What does ALS stand for?  Amyotrophic lateral sclerosis, sometimes it is referred to as Lou Gehrigs Disease.  Actually, the first time ever heard of it I was about 16-17 years old, and that is what I was told my great aunt Thelma had been diagnosed with.

What is ALS?

ALS is a progressive degenerative neurological disorder.  It causes the nerve cells in the brain and spinal cord to gradually deteriorate.  People diagnosed with it ultimately lose the ability to move, speak, swallow, and finally breathe.  It usually leads to complete paralysis, and it leads to death within 2-5 years of diagnosis.

I received an email last week asking me to join this charity campaign for ALS that would benefit the ALS Therapy Development Institute.  After watching my aunt suffer and die from this terrible disease as a young adult, participating in this campaign was a no brainer for me.  I immediately said yes.  I don’t have a lot of beautiful photography to share today.  No fashion or DIY posts either.  But what I do have to share with you today is the stories that I carry with me in my heart about my Aunt Thelma, who I dearly loved.

How ALS has Affected My Life

My aunt Thelma was the sister of my maternal grandmother.  She was married to my uncle Charles for a lot of years.  I wish I could say how many, but I don’t know for sure, both of them have passed, along with my grandmother, and so I don’t have access to many facts.  But suffice to say, they were married for a very long time.  They lived in a tiny little town called new Martinsville, West Virginia.  They had one child, my Aunt Carol, who lived in Austin, TX.    My Aunt Carol had two sons, and one of them, Jack, was the same age as me.  She used to bring Jackie, as I called him, home to New Martinsville with her every summer for a visit.  And because we were the same age, I was always invited to come and stay for a week or two.

Oh how I looked forward to those visits to New Martinsville every summer!  My cousin Jackie and I were both gymnasts so we spent hours and hours tumbling and doing tricks in the back yard, visiting the local city pool, taking walks to a small little airport not far from Aunt Thelma’s house, going on shopping trips to the local downtown area, and just hanging out wasting away the lazy summer days.  I loved those extended visits so much!  They are a part of my childhood that I hold very dear.

My Aunt Thelma was old enough to be my grandma (she was my grandmother’s younger sister), but I always thought she was such a classy lady.  She was the queen of the bouffant hairstyle!  I don’t remember a time, until she got sick with ALS) that my aunt didn’t have her hair fixed and her makeup on point!  She sold Avon, which seemed very glamorous to me at that young age.  She also had an adult sized tricycle that I was so enamoured with!  It had one front wheel and two back wheels, and I loved it when she would let me ride it around the neighborhood.

She was always so kind to me.  I loved being there with all of them, and she always had a spotless home and a hot meal ready in the evenings.  As I became a teenager, my visits to New Martinsville became fewer and further between.  I was involved in activities and cheerleading, and I could not longer take a week or two to visit.  Plus, being a teenager that I was, I was more interested in spending time with my friends, so my cousin Jackie would come and visit me and stay at my house instead.

It was at some point during my junior or senior year of high school that I found out my Aunt Thelma had been diagnosed with ALS.  I had no clue what it was, but we quickly found out and witnessed what it did to her.  It all began with her losing her balance and falling down.  And the whole thing progressed really quickly.  She ended up using a walker to get around, and then a wheelchair.  She started choking on her food, and eventually was unable to feed herself.  My Uncle had to start feeding her baby food, it was the only thing she could swallow.  She lost the ability to speak, and for a while she was able to write us notes on a chalkboard or a notepad.  But that quickly changed and she was unable to do even that.  She wound up in a nursing home where she eventually passed away.

I remember visiting her a handful of times during her illness.  I remember being shocked each time at how rapidly downhill she had went.  I remember, being the stupid 18 year old that I was, taking my boyfriend to her home because I so wanted her to meet him.  But she got upset and didn’t want us there.  The thought had never occurred to me that she was embarrassed to have a stranger see her that way.  And I remember the pain I felt in my heart that I had caused her to feel that way.

I remember visiting her in the nursing home and she could no longer walk or speak, and was on a feeding tube.  But her eyes were 100% alert and it was obvious that there was nothing wrong with her mind.  She was trapped inside of her own body.  I remember the suffocating feeling I felt that day witnessing all of this.  And I remember saying to my grandma (her sister) and my aunt, that Lou Gehrigs disease had to be the worst disease ever to be diagnosed with.  It scared me.  It really threw me for a loop.  It wasn’t long after that visit that Aunt Thelma passed away.  It was so unbelievably sad to see that happen to someone I dearly loved.

So when I was asked to participate in this charitable campaign, I didn’t hesitate for one moment to say yes.  I didn’t hesitate for one moment to share this story with all of you.  I want to keep my Aunt Thelma’s memory alive.  I want everyone to know that I had an Aunt Thelma who loved me very much, and I loved her.  and my Aunt died as a result of ALS.  It took away her dignity, and then it took away her life.  And if there is even one little thing I can do or say to help support this worthy cause, I will be right there doing it.

Have you heard of the ALS Therapy Development Institute?  It is an organization dedicated to finding a cure for ALS.  As a matter of fact it is the world’s foremost drug discovery center focused solely on ALS.  Their innovative science and cutting edge approach have led to the identification of AT-1501.  They have also pioneered the ALS precision medicine program.

What is AT-1501?

AT-1501 (antiCD40L) is an antibody therapeutic with comprehensive and promising preclinical data. It blocks specific immune cell activation and protects nerves against the progression of ALS and Alzheimer’s Disease.  The development of AT-1501, a novel antibody which acts in a highly targeted, disease specific way to tamp down the immune system, is now ready for clinical translation. Developed at the ALS Therapy Development Institute, this potential therapeutic has been screened in more preclinical efficacy experiments than any other compound proposed in the history of the battle to end ALS. And, working closely with people with ALS in the lab and in the clinic, we have identified candidate biomarkers that will allow us to more rapidly conduct clinical trials.  AT-1501 will not make it to the clinic without immediate philanthropic support.  AT-1501 is the most effective treatment tested at the ALS Therapy Development Institute!

At this moment, AT-1501, our most promising treatment candidate, is literally sitting in a freezer. Why? Because we need funding to advance AT-1501 out of the freezer and into people living with ALS.

The ALS Therapy Development Institute is a nonprofit biotech that operates without regard to profit or politics.  Led by people with ALS and drug development experts.  They are funded by a global network of supporters, and they are dedicated to ending ALS in our lifetime.

ALS is not incurable, only underfunded.

What can you do to help?  What they really need is money to advance this important research and get this into clinical trials.  Please consider making a donation.  However big or small the donation, every dollar helps.

Click here to donate.

Do you have a personal story to share?  I would encourage you to share it in the comments, or to share this post I have written on any of your social media channels.  Please please, share this post on Facebook!  If there is any post I have ever written that I would ask people to share, let it be this one.  Encourage people to donate money to this worthy cause.  I want to see an end to ALS in my lifetime, don’t you?