Ann's ALS Expenses

My sister-in-law, Ann (Kyle's  wife) has recently been diagnosed with ALS ( Lou Gehrig's disease). She is only 48. There is no cure. A year ago, Ann began to have leg pain. She had trouble walking and would walk on the outsides of her feet. Her gait resembled kind of a waddle. She had tingling sensations in her feet and legs. In May, she was still walking 10,000 steps/day. By mid-summer the tingling had spread to her arms and back and she was now using canes to walk.  By Labor Day, she was using a walker. Her speech has been impacted and as the day goes on and she grows tired, her words become more garbled and hard to understand.  She now has a wheelchair.  They had to buy a new mattress that could lift her up out of bed and a chair that tilts up. This disease is vey progressive and devastating.

A new treatment from Japan has recently been approved. It is expensive. Ann is the 9th person to try it.  It does not cure the disease but can possibly slow down the progression.  For two weeks, she will have a needle in her wrist and take the medicine daily.  Eventually she will need a port in her chest to accept the infusions which will be in 14 and then 10 day increments. 

The financial aspects of this disease can be devastating.  Their home must be modified to accommodate a wheel chair and access to a bathroom.  Ann's last day of work will have to be December 1st so they will lose her income once the disability runs out. There are numerous medical treatments that run in the thousands - lifts, respirators, harnesses, communication devices. They have 3 children all in high school.  Please help if you can. If we all just give a little, it can help one family alot.
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Organizer and beneficiary

Michelle Grube Kastor 
Organizer
Annapolis, MD
Kyle Grube 
Beneficiary
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