Our Own Super Human

Medical history has been filled with an array of diseases and illnesses, ranging from the common cold to deadly killers. Some are easily treatable and others can be terminal, but some of the worst are those that still remain without a cure; one such disease is amyotrophic lateral sclerosis.

Amyotrophic lateral sclerosis, or ALS, is a degenerative disease affecting the human nervous system. It is a deadly disease that cripples and kills its victims due to a breakdown in the body’s motor neurons. Motor neurons are nerve cells in the brainstem and spinal cord that control muscle contractions. In ALS, these neurons deteriorate to a point that all movement, including breathing, halts.

One major reason ALS is such a frightening disease is because early symptoms of of the disease are very slight (and often overlooked) and because no cure (or cause) has been found.

My mom, Jan Giordano, was diagnosed with ALS many years ago. She is approaching 9 years living on a ventilator… that’s a long time to live hooked to a machine that helps you breath.

McKinley (5), Gigi, Avery (8)

A lot of people might not understand why Mom would want to live that way, but if you ask my oldest daughter she will pretty much tell you Gigi is like super human with her machine.

As my memory recalls, Mom had not really planned on going on a vent when her ALS progressed to that stage. It just so happens that shortly before that decision had to be made my brother left for his first deployment as Army Special Forces and I shared the news that I was pregnant with my first child. Mom decided that going on a vent was definitely worth it if it meant she got to see her son return safely from the Middle East and for her to meet her first grandchild. So the decision was made.

As Mom and Ted adjusted to this stage of LIVING with ALS, a wonderful group of women banded together to provide the care Mom needed with the vent. She then got to see her son returned safely home and her granddaughter join the family.

McKinley (5), Claire (1), Avery (8), Warner (4)

Since making the decision to be put on a ventilator, three more grandchildren have been added to the family and I don’t think anything makes Mom as happy as when she can spend time with them.

Whether it be family trips to the beach, time at home in Roswell, cross country drives to Texas, birthday parties or cookouts, Mom and Ted do it all… getting the opportunity to spend precious time with our family means so much to each and every one of us. We are so thankful for Mom’s strength and, of course, Ted’s hard work to make it possible. 

Gigi, know that your granddaughter lights up when she tells people, “My Gigi decided to go on that machine so she could meet me!”

My family is just one of the 30,000 families affect by the debilitating disease. According to the Hospital for Special Surgery, approximately 50% of people diagnosed with ALS live at least three or more years after diagnosis. About 25% live five years or more and up to 10% live more than 10 years. My Mom, who has LIVED with ALS for more than 10 years, truly is super human.

As a previous post mentioned, “To have a charity event created in your honor, you must be a pretty special person. For many in the Roswell community, Jan Giordano, a lady who isn’t taking ALS lying down, is just that (a pretty special person).”

That is why we need YOUR help.

There has already been great strides made in research to find a cure for ALS thanks to the awareness from the Ice Bucket Challenge. In fact, funds raised by the ice bucket challenge exceeded over $115M in a SINGLE month. Those funds helped support research that uncovered a gene variant associated with ALS. Without fund and awareness raising events such as the Ice Buck Challenge and the ALS Art Affair, the uncovering of the gene variant wouldn’t have been possible. Although the gene variant isn’t a cure for ALS, it’s just the beginning of understanding the mystery behind the disease and puts us one step close to finding a cure.

Jan’s daughter,
Kendall Wueste

In efforts to continue the research to help find a cure for ALS, we ask you to participate in our ALS Art Affair. Join our guest of honor, Jan Giordano, her creative friends and admirers, and members of your community in a night surrounded by art and music to raise funds to support research to help defeat ALS.

The evening includes wine, beer, passed hors d’oeuvres, musical entertainment, raffle, and a silent auction of original works of art by local artists.

ALS Art Affair proceeds will support Emory ALS Clinic, which combines state of the art clinical care with cutting edge clinical and basic research. The Emory ALS Clinic provides multidisciplinary care to ALS patients and their families, focusing on independence and quality of life through state of the art intervention. Their research focuses on basic mechanisms of motor neuron degeneration, genetics of ALS, and new experimental treatments.

“I am so grateful for your efforts toward raising funds to cure ALS in my honor.” -Jan Giordano

For more information about how you can purchase tickets or become a sponsor, please visit our About Us page or CLICK HERE.

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