2019 SuperHero 5K/10K Dash

Super Robinator

ashley photo

 

WHY I WANT TO DASH OUT ALS

On May 30th, 2013 my Mama Robin was diagnosed with Fronto-Temporal Dementia (FTD) at the age of 57. Her mental and behavioral capacities diminished rapidly and then started noticing several physical symptoms - a gait in her step, trips and falls, poor muscle coordination. She then was given the diagnosis of Amyotrophic Lateral Sclerosis (ALS) in addition.

Her unawareness of surroundings and inability to care for herself were very tragic, but in some ways a blessing to her. She eventually lost the ability to swallow and eat foods, talk with us, or move on her own. I saw firsthand the effects of ALS on the person's body and mind, the family, and the devastating financial costs.

She gained her angel wings just after turning 59 on St. Nicholas Day, December 6th 2014.

We are seeing more cases of ALS and FTD together in a common genetic mutation known as TDP-43. Research has come so far but is many years from a reason, treatment or even cure. My Mother is why I started working for the ALS Association - to help fund research for treatments and a cure. The many families I have met since working with our chapter is why I am continually inspired.


FACTS ABOUT ALS

-ALS stands for Amyotrophic Lateral Sclerosis and is more commonly known as Lou Gehrig’s disease

 -Every 90 minutes someone is diagnosed with ALS, and every 90 minutes someone loses their battle to this fatal disease

-The average life span after diagnosis is 2-5 years

-Living with ALS can cost more than $200,000 per year


SOME OF WHAT YOUR DONATIONS HAVE DONE THIS PAST YEAR

-Provided support and consultation to 603 individuals living with ALS through a variety of services and engagements.

-Delivered over 720 assistive communication devices to individuals who have lost their ability to speak due to ALS.

-Connected 414 individuals living with ALS to 1,543 pieces of equipment through our Durable Medical Equipment Loan Pool.

-Subsidized 7,124 hours of respite care for 104 caregivers who are supporting a family member or friend living with ALS.

-Invested over $760,000 in ALS research.


So THANK YOU for your support!

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