joames

joames
Location
New Jersey, USA
Birthday
December 25
Bio
Writer, advocate, activist, EMT, teacher, massage therapist. Have written for Exceptional Parent and New Jersey Monthly magazines and looking to add to those experiences. All contents copyright by the author unless otherwise noted. All rights reserved

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JANUARY 25, 2012 3:24PM

Never Underestimate the Power of Words

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Never underestimate the power of words.  This is the speech that I gave with my late husband Kevin and our daughter Alina (both by my side) in 1995 at the Rilutek hearing in Washington, D.C. At the time, there were no drugs approved specifically for ALS.  Rilutek proves to extend life expectancy in patients for three months, but those three months might mean the world to a patient.  Perhaps they allow the attendance of a special wedding, the witness of a new birth, or the celebration of a silver anniversary.  Whatever they grant, they were well earned and needed.

The use of Riluzole for ALS patients passed that day, 4 to 3 at the FDA hearing. It just passed, but it PASSED.  Today it is still the only FDA approved drug specifically for ALS. Never underestimate your power to create change.You are your best advocate so be loud and be heard. 

And my speech:

There is nothing like the warmth of the morning sun and the sound of my three year old daughter Alina whispering in my ear, “Mommy, I awake!” When she awakes, she is excited about beginning the day.  My husband Kevin and I are excited and grateful for each day that we are granted as well.  We relish the simple pleasures of life, such as the joyous laughter of Alina when we hug and play as a family.  Our world would be just perfect if Kevin wasn’t terminally ill.  As a young family, we are just beginning to grow.  I Jodi O’Donnell am twenty-nine years old and my husband Kevin, thirty years old, lives with ALS.  Unfortunately, the wrath of this ruthless disease may rob him of his most precious years, my daughter of her loving father, and I of my partner and best friend in life.

It has been our goal to remain hopeful and optimistic about our situation; only four months have passed since Kevin’s diagnosis and our lives have already been greatly affected. Kevin how has minor symptoms that cause discomfort: cramping, fasciculations, shortness of breath, fatigue, falling and muscular weakness.  Still, we manage to wake up smiling and appreciative for each moment and have even accept the challenges that confront us.  Regardless, of our positive outlook, rethought, the presence of ALS is constantly in the back of our minds; keeping us captive of what is to become of us if nothing is done. I cannot fathom what life was like for ALS patients ten, five, even three years ago- without even one approved drug in their corner.

Kevin was diagnosed with ALS on Memorial Day Weekend, 1995 after eight months of doctors and tests.  Soon after, the wonderful news of Riluzole and its efficacy was released.  This news has remained the thread that has woven our hope and dreams.  We realize that research takes time, but that time is so precious to my husband and thousands of others with ALS.  Each day that we fail to have access to the proper prescriptions, leaves us one day further along defeated.

Some of you may be familiar with the statistics and facts associated with ALS, but please allow me to remind you- approximately 30,000 people in the U.S. currently live with ALS.  The average life expectancy of an ALS patient is 3-5 years.  As many as 80% of those 30,000 victims will die of ALS within five years.  Mathematically, that means that 24,000 people have very little time to waste; to those of us with ALS, life is far too precious for precision.

  Time is of essence here; the accessibility of Riluzole is currently the only answer for many peo0ple who are trying desperately to be patient.  As patient as we may be, ALS waits for nothing.  It is relentless; it rapes its victims of their physical capabilities yet leaves the intellect fully conscious to observe the body’s decline.  And sometimes, it does that as rapidly as one year.  I understand it is the FDA’s responsibility to fully test experimental drugs, however, the present system in not working quickly enough.  The clinical drug trials available are wonderful, but leave those who do not quality despondent and without hope.  And who has time for placebos?  We are fragile human beings in need of help.  If a drug for cancer can be approved in six months, then Riluzole should be approved just as quickly. 

ALS patients matter equally! Given the alternatives that we have, we’ll accept the risks of experimental drugs, because the benefits outweigh the risks and our bodies are already failing us.  Considering the fact that we are already terminal, what do we have to lose? I implore you, for the benefit of so many genuine people who depend on your compassionate decision making, proceed quickly with the approval and availability of Riluzole.  As it stands now, our lives depend on you and we trust that you will do the right thing.Valentine's Day...Kevin with a snugglie Alina. 

 

Author tags:

advocate, als, change, rilutek, speech, fda

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