Nora's SMART (SMA Runner Tiffany)

GWENDOLYN STRONG FOUNDATION

Nora's SMART (SMA Runner Tiffany)


Nora's SMART (SMA Runner Tiffany)

Thank you for visiting my fundraising page! Donating through this website is simple, fast and totally secure. It is also the most efficient way to support my fundraising efforts to raise money for SMA research and a cure..

I, who have frequently said things like “I don’t run unless I’m being chased by zombies," declared 2016 the year of running for my niece Nora Gooden after starting a Couch to 5k in Nov of 2015. I was inspired by my sister-in-law Jaime Gooden, the Lunt family, and Gwendolyn Strong running the Santa Barbara half-marathon, Brian Chesteen's Dopey Challenge Run, and of course, by Nora. Depending on my injury status, I'll be running races through November to raise money to cure SMA.

Races completed in 2016, for a grand total of 55.9 miles run in races and over 300k run in training. 

  • DONE! Shamrock Shuffle on March 13 in downtown Madison. 
  • DONE! A Run Through History - a 5k held in Metairie Cemetery in New Orleans on April 17. 
  • DONE! Canine Campus Crawl (2.5 miles) - April 24 on campus in Madison
  • DONE! Madison Music 5k - May 14 in Madison by Hilldale
  • DONE! Twilight Run 5k - May 28 in Madison on the capital square
  • DONE! Capitol View Triathalon 5k (run portion of a relay trio) - June 12 at Gov. Nelson State Park, Waunakee, WI
  • DONE! Hot 2 Trot Fireman's Run 10k - June 18 in Cottage Grove, WI
  • DONE! Firecracker 5k - July 4, my neighborhood's annual run
  • DONE! Capitol City 5k for organ donation - July 30, Madison
  • DONE! Book It 'N Run 5k - August 6, Sun Prairie
  • DONE! Zoo Run Run 5k - Sept 25, Vilas Zoo, Madison
  • DONE! Trick or Trot 5k for GSAFE - Oct 16, Madison capitol square
  • DONE! Haunted Hustle 5k - Oct. 29, Middleton
  • DONE! Santa Barbara half-marathon - 13.1 miles!! - Nov. 12 in California

 

My niece (you can read more about her on her web page at http://www.goodentree.com) turned 7 in January of 2016. When she was an infant, after a few months of missing her development benchmarks, they did some testing and found that she has SMA. SMA stands for Spinal Muscular Atrophy. It's a mutation of a motor neuron gene that slowly degrades the nerve signals to the muscles. Slowly she has lost the ability to move. She has never sat up or walked, and she had to have a feeding tube inserted at 7 months because she lost her ability to swallow. Her mind is just fine, but about a year or so ago, she lost her ability to smile. She is bright, funny, and engaged, and my brother and sister-in-law have done so much to make the world accessible to her.

The cure is close! They've done drug trials on SMA Type 1 children (the same type as Nora) that have slowed the disease enough to allow the child to stand, walk, and climb. Nora is too old now to participate in drug trials, but a cure for the disease would likely mean that she would be able to cough and swallow on her own. Pneumonia is often what kills SMA children, because their muscles for breathing get weaker as they get bigger. So, being able to breathe more easily would be HUGE.

Even if a cure cannot be found in time to save Nora's life, no family should have to go through what my brother and sister-in-law have gone through. No family should have to go through what the Strong family is going through, having lost Gwendolyn last year (the namesake for ‪#‎teamGSF‬ and the foundation this money goes to that is, in turn, given to researchers). So, that's why I run, and that's why I pester you all endlessly to donate. Thanks for reading, and thanks for helping to raise awareness of this disease and money for research.

You can find out more about Nora on her website at goodentree.com and more about the Gwendolyn Strong Foundation on their website at thegsf.org

Many thanks for your support -- and don't forget to forward this to anyone who you think might want to donate too!

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