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Beyond the Icebucket Challenge

Organized by: Stan Hailes

Stan's Photo


We have heard many stories about celebrities doing the Icebucket Challenge and helping to raise over $62 million dollars to help find a cure. How many stories have we heard about the people living with this disease? Well, I would like to introduce you to my mom, Deenie. She is dying of ALS, and beyond the Icebucket Challenge and any myths that ALS does not affect African Americans, it is important that we all fathom the severity of this disease.

/homepages/37/d484552600/htdocs/clickandbuilds/WordPress/MyBlog/wp-content/uploads/2014/08/Deenie.pngALS or Amyotrophic Lateral Sclerosis is a neurodegenerative disease with no known cause or cures. ALS can strike anyone, and there is no way to stop it. This brutal disease strips your body of nearly all muscle movement because it kills the messengers that travel from your brain to your muscles.

After years working on Capitol Hill, lobbying, event planning, and media production, my mom planned her retirement in the Atlanta were she now lives. Before she moved, she was in excellent health, other than an aching pain she started having in her right shoulder. That pain later turned out to be an early symptom of ALS. In no time, the pain spread down to her hand and her entire arm became paralyzed.

We looked up doctors and clinical trials all over the world to find a cure or a medicine that would slow down the progression of this disease. We found a clinical trial and my mom began taking the experimental medications prescribed, in hopes of finding a cure. We had no success.

My mom has become a prisoner in her own body . She can no longer speak, walk, type, chew, or drink. She communicates by blinking once to say no and twice to say yes. These are one of the few muscles she is able to move.

Can you imagine…

1) having something to say , but no ability to speak, type, or use sign language?

2) being thirsty , but unable to swallow a sip of water?

3) being fed through a feeding tube, and no longer savoring the taste of any food?

4) sitting in a chair, and relying on others to position your head, arms, and legs comfortably?

5) being paralyzed, and unable to hug your child?

This is my mom’s daily experience.

Friends of my mother have walked in her name to support the ALS Association in finding a cure to this deadly disease. Many have taken the ice bucket challenge. Now we want everyone who may not personally know anyone suffering from ALS to know that they now know Deenie. The average life expectancy is 2-5 years for those with ALS. We don’t know how much time we will still have with her, but we want to be there for her while she is still here. Although this incredible woman is biologically my mom, WE ARE ALL FAMILY.

What can you do?

Help this campaign reach the world. Share it with everyone you know to spread awareness
- Here is a sample tweet or facebook post you can use: RT 4 Support-Beyond the #IcebucketChallenge: ALS and My Dying Mom -> #Donate2Deenie

#Donate2Deenie: We are fundraising money because on average, ALS patient care can be upwards of 200K a year.Your donations will help our family travel to Atlanta and cover other costs of caring for her. Our minimum goal is $10,500. Let the world know that you #Donate2Deenie. Although this incredible woman is biologically my mom, WE ARE ALL FAMILY.

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Organized by

Stan Hailes

This is a direct to organizer fundraiser.

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