Pilar de la Aguilera Weiss

375 South End Avenue, Apt. 26-S
New York, NY 10280-1080
kmbjap@aol.com
212/321-3328
April 1, 2008
The Oprah Winfrey Foundation
110 North CarpenterChicago, IL 60607

Attn: Oprah Show Producers

Dear Ms. Winfrey:

My name is Kathleen Bachand. I am fortunate enough to have been a close friend of Pilar (de la Aguilera) Weiss since her arrival from Cuba at my Junior College. Pilar (Pili) was diagnosed at Cleveland Clinic on 3/9/06 with the debilitating, rapidly moving, deadly disease of ALS (Amyotrophic Lateral Sclerosis) better known as Lou Gehrig’s Disease. First her legs failed and she needed a cane, then a walker, then a rolling walker - then her legs couldn’t move at all and she required a wheelchair. Her arms grew weaker and she couldn’t wheel herself, and soon couldn’t even raise her arms up (think of combing your hair). She was only 60 years young; she taught Spanish to pre-schoolers; she and her loving husband, Brian (a college teacher), raised two great children – a son now in Florida and a daughter who lives not far from the family home in Kettering, Ohio.

Lou Gehrig made his famous speech at Yankee Stadium around the time Pilar was born in Cuba. Tragically nothing has been discovered to even slow this savage disease let alone find a cure since then. Pili was told she had only 18 months to 2 years to live, which is the typical ‘death sentence’ for newly diagnosed ALS patients. This insidious disease desperately needs more visibility to help fund the search for a cure and more attention for people dying from ALS (and their caregivers). Brian took care of Pili in their home which rapidly became non-accessible (doorways too narrow; inability to get from chair to bed or to bath, etc.) This is a very real public health issue that needs to be dealt with! Fifteen people a day are diagnosed in the United States.

Pilar is now in a nursing home in Ohio, unable to speak for well over a year, and on a ventilator. Her husband and her mother initially used letter boards to find out what Pilar needed by slightly inclining her head for ‘yes’ or ‘no.’ Now even that ability is gone and only her eyes move – barely noticeably to the right (yes) or left (no). The disease has left her totally immobilized except for that. She thinks, hears and can see, but can only look at the ceiling all day. Think about what that must be like!

ALS has robbed a school of their teacher, and someone who made great contributions to her community. But most of all – her family is losing their loving daughter, wife, mother and so many of us are losing a dear, dear, vibrant friend.

At the conclusion of Walk to d-Feet ALS on April 19th, 2008, in Orlando, FL, Ken Patterson, Sr. (who lives with ALS) will ride his wheelchair while Jerry House will ride along on a bicycle on a 940 mile, 20 day trip to Washington, DC. This is being done for one reason only: Raise Awareness for ALS!!

Anything you can do to bring awareness of this killer disease to your audience, would be so very much appreciated by all of us affected by this dread disease. 60 years of almost no progress has to stop NOW!!

A viewer,

Kathleen M. Bachand