WELCOME!
In May of 2023, MA visited Washington DC to advocate for ALS heroes and their families.
In June of 2023, we hosted a comedy fundraiser at the Miami Improv.
This is Jules’ 5-minute set from that awesome night.
- MERCH -
BEER COLLAB WITH PRISON PALS
- OUR STORY -
Our story began back in 2010, but that’s a tale for another day…
In March of 2020 we heard words that shook us to the core ‘this may be ALS’. As the country went into lockdown, with uncertainty in the air, we were now facing the unthinkable. He was diagnosed with ALS (Amyotrophic Lateral Sclerosis) in May of 2020.
When we drove back from the doctor’s office, holding hands tightly and with tears in our eyes he looked at me and said, ‘whatever happens, I want to keep sharing our story’. And so we have. Our podcast then became a space for us to expand into telling our ALS story. What it looks like for a man to deal with this horrific disease, what it’s like for a couple to adapt and transform in new ways, what it means when parents need to recalibrate the ways they live and the courage they have so that their son keeps growing up with love, hope and resilience.
Like a dense fog, ALS has clouded over everything in our lives. Along with the dense fog we’ve grown to see the immense beauty that lies within us, the strength, the love and the compassion that can only be extracted under the harshest of circumstances. We’ve seen the most magnificent light peering through the fog, we look for it every day.
Each day is hard, each day brings a multitude of challenges, each day is emotionally, physically, mentally and spiritually exhausting. We choose to always come back to telling our story, to living in the moment, to noticing the good things and appreciating the blessings around us. We also laugh, fight, cry and feel the loss of hope and devastation that ALS brings with it.
We live ‘Right Here, Right Now’ a mantra and motto that we sometimes say with strength in our voice, sometimes in a low whisper as we cry and hold each other.
Thank you for supporting our journey, for seeing our pain and our joy, for choosing to live ‘Right Here, Right Now’, along with us.
- GO FUND ME -
Whether its expensive medications, physical therapy, special equipment, nutritional resources or caregiver needs, ALS takes a huge financial toll.
Jules’ is 24/7 meaning that Maria Aleandra is unable to take a traditional job. Besides the ability to spend this precious time together is something we value deeply.
The funds generated through the GoFundMe have also made it possible for us to take family trips together and make memories that will remain with Skyler forever.
Our dear friend Inarra Griffyn is hosting this fundraiser, we are so grateful.
GOFUNDME
WHAT IS AMYOTROPHIC LATERAL SCLEROSIS (ALS)?
Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's Disease, is a rare neurological disease that affects motor neurons—those nerve cells in the brain and spinal cord that control voluntary muscle movement. Voluntary muscles are those we choose to move to produce movements like chewing, walking, and talking. The disease is progressive, meaning the symptoms get worse over time. ALS has no cure and there is no effective treatment to reverse its progression.
With the loss of these nerve cells, the brain is no longer able to control muscle movement and patients progressively lose the ability to perform everyday tasks, such as walking, reaching for items, or dressing themselves. In later stages, paralysis typically occurs, and the disorder affects a person’s ability to breathe.
It is estimated that around 450,000 people worldwide are living with ALS, with over 30,000 people in the USA suffering from the condition at any given time.
Someone is diagnosed with ALS every 90 minutes.
The average age of diagnosis is 55.
Life expectancy after diagnosis with ALS is 2 to 5 years.
ALS has no known cure.
