Beat Incurable ALS or Die Trying

BEAT THE INCURABLE ALS OR DIE TRYING.

8/16 - WE'VE GOT GOOD NEWS.  AND BETTER NEWS!

Thanks to the overwhelming support from you, STEVIE’S ANGELS, I have managed to be settled into a long-term care facility. Now the ball game really begins! In true Lou Gehrig’s fashion, we’re rounding first base. To this end, the goal has been updated, as it will be along the journey.

We have identified some heavy hitters in the area of cutting edge adaptive devices, including robotic feeding and communicative equipment. This of course, comes with a heavy price tag over the long term.

This is where you come in once again, to help me and ALS beat this disease. Your continued support and help in spreading the word of my need, would be gratefully appreciated. Scrolling through your rolodexes of philanthropic friends would be even more appreciated.

From the bottom of my heart, let’s ROCK ON!

__________________________________________________________

7/22 - Dear Family, Friends and ANGELS (Appreciated, Needed, Generous, Eternal, Loving, Souls):

For those of you who haven't heard, I have been diagnosed with Amyotrophic Lateral Sclerosis (ALS), a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord.  ALS is also known as Lou Gehrig's Disease. Currently there is no known cure. ALS almost always progresses, and there is the expectation of it taking away my ability to walk, dress myself, write, speak, swallow and breathe. And laugh. Ultimately shortening my life span.

Let me be clear, however, this is not a story of a pity party.

As you can imagine being faced with one’s own mortality is, in this case, literally breath taking. And, for me to admit I need help—urgent help--is also life changing.

I am already having difficulty doing the basics (speaking, standing, walking) and support is needed 24/7. Today, my comprehensive care plan is managed by an expert team at Johns Hopkins in the Washington-Baltimore area. Just today I learned I may also get supplemental care at George Washington University Hospital and MedStar Washington Hospital Center.

Fortunately, I’m part of clinical research and with your help will extend my life and perhaps together we’ll find a cure for ALS.

So now, I humbly ask you to be an ANGEL and join Stevie’s Angels. This is an expensive journey, for me and for furthering ALS research. I need funding to continue with available care and treatments not supported by health insurance.

As this journey unravels I will, with help, provide updates on how I’m faring and research is progressing.

What you can do is: please go to www.gofundme……. and support my medical fund.  Share my story and spread awareness of my need and ALS (http://www.alsa.org).

From the bottom of my heart, let’s rock on. Peace.– Stevie Bornn

Donations

 See top
  • Randi Udelson 
    • $250 
    • 39 mos
  • Debbie Danielson-Corbo 
    • $100 
    • 39 mos
  • Ingrid and Bobby Hamilton 
    • $100 
    • 39 mos
  • charlotte steele 
    • $100 
    • 40 mos
  • Deb Avery 
    • $50 
    • 41 mos
See all

Organizer

Steve Bornn 
Organizer
Charlotte Amalie, United States Virgin Islands
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