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Baldwin Family ALS Site

Jessica Baldwin

This website was created in honor of Tom Baldwin (11/11/55 - 2/18/13), loving husband, devoted father and friend to many, diagnosed with ALS in December, 2011, having left this world peacefully on February 18, 2013.

FUNDRAISING EVENTS: Thank you to all who have donated!
Medved 5K to Cure ALS - 2012 - Rochester, NY:  $8000
Medved 5K to Cure ALS - 2013 - Rochester, NY:  $4,285
Zumbathon Benefit - 2014 - Rochester, NY:  $600
Medved 5K to Cure ALS - 2014 - Rochester, NY 
#alsicebucketchallenge - 2014 - Everywhere: $1500+
Zumbathon Benefit - 2015 - Rochester, NY: $1200
Medved 5K to Cure ALS - 2015 - Rochester, NY 



AUGUST 2011 - Tom first noticed weakness in his hands and balance issues on the golf course in late August and, with the addition of dragging in his left foot, sought medical intervention in the Fall of 2011. 

DECEMBER 2011 - After extensive testing with the URMC neurology team, Tom was given the working diagnosis of motor neuron disease on December 4, 2011 at the age of 56. 

JANUARY 2012 - Following Tom's confirmed ALS diagnosis on January 4, 2012, the weakness in his legs, hands and arms progressed quickly throughout the winter.

FEBRUARY 2012 - Tom enjoyed a beautiful vacation to Aruba with his wife, Chrys. 

MARCH 2012 - Tom began to notice differences with swallowing, noticeable changes in his voice, and even more difficulty with his stability.

APRIL 2012 - Tom officially stopped work in mid April leaving his company and trusted colleagues on a high note.

MAY 2012 -  The Baldwin family purchased and built a beautiful new one story, accesible home. The family moved to Timber Glen in May and Tom began using a hospital bed, hoyer lift, power chair and shower chair at that time.

JULY 2012 - Jessica and Katie completed and raised nearly $8,000 for the Medved 5K to Cure ALS. 

AUGUST/SEPTEMBER 2012 - Tom's symptoms continued to worsen (mobility, speech, swallowing, etc) causing him to begin with Lifetime care in September.

OCTOBER 2012 - Tom's son Nick, and his wife Erin, moved back home to Rochester and purchased a house in Penfield, two miles from the Baldwin Family home. Tom was all smiles!

NOVEMBER 2012 - Tom was able to enjoy his 57th birthday, as well as his 34th wedding anniversary in the comfort of his home with immediate family. 

DECEMBER 2012: ONE YEAR ANNIVERSARY - One year after diagnosis, Tom had lost complete mobility in his arms and legs. His speech was almost completely diminished and swallowing continued to become increasingly difficult. Tom began using a dynavox computer to communicate. 

FEBRUARY 2013 - Tom passed on February 18, 2013 at Lifetime's In-Patient Hospice Center with his family at his side. 

FEBRUARY 2014 - Click the link to read "My Fathers Wine Cellar", a one year remembrance blog written by Nicholas Baldwin, Tom's son: http://www.nicholasbaldwin.com/blog/2014/2/18/my-fathers-wine-cellar

Amyotrophic lateral sclerosis (ALS), often referred to as "Lou Gehrig's Disease," is a progressive, non-curable neurodegenerative disease that affects the nerve cells in the brain and spinal cord that control voluntary muscle movement, paralyzing the body but leaving the mind intact. Patients with ALS live on average two to five years following diagnosis. Currently, there is no cure and no effective treatment.

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