November newsletter with walk - Sacramento - ALS Association

2717 Cottage Way Suite 8
Sacramento, CA 95825
Phone (916) 979-9265
Fax (916) 979-9271
www.alssac.org
November 2009
Special Walk Section pgs. 2-18
Lines from Lee pg. 19
Giving Back pg. 20
In the Board Room pg. 20
National Caregiver Month pg. 21
In Memory of/Thank You’s pg. 21
THE ALS ASSOCIATION
GREATER SACRAMENTO CHAPTER
PATIENT • CAREGIVER • FAMILY
SPECIAL WALK TO DEFEAT ALS EDITION
NEWSLETTER

Dear Friends:
The 9th Annual Walk to Defeat ALS event was a hands-down winner! 1,500
people showed up in support of our PALS and caregivers; breaking all
attendance records from any other Walk in the Chapter’s history!
We are very pleased to announce that we raised more money than we did last
year and we are continuing to see donations come in from team captains, individual
walkers and corporate sponsors! Your participation in the 2009 Walk
helped to raise funds and awareness—proving again that our PALS will not
face this disease alone.
For many of our PALS, this year’s Walk was their first—and while we hope to
see them in the subsequent years; we are painfully aware that some may have
only one opportunity to walk to defeat the disease that has so boldly and catastrophically
stripped them of their life.
Our job is to ensure newly diagnosed patients are provided with the care, love
and support needed to navigate through the myriad of challenges they will face.
The Walk offers the unique opportunity to directly fund the services needed by
our PALS.
Out of pocket costs can be up to $250,000 annually—thus creating a barrier for
many seeking to improve their quality of life. Our programs and services help to
augment those costs by providing loaned medical equipment, respite funding
and support services.
Having an advocate to help with these issues is not only helpful, but essential
for those without the support of an extended family/ caregiver network.
The ALS Chapter staff is committed to providing compassionate
care and support to PALS, caregivers and families and will continue
to champion for those who are most vulnerable.
Thank you again for all that you did to make the Walk a
success! I look forward to seeing you all again next year!
Warmly,
A m y S u g i m o t o , E x e c u t i v e D i r e c t o r

Leading the way to a cure….
O O u u r r B B o o a a r r d d o o f f D D i i r r e e c c tt t o o r r s s & & & S S t t a a f f f
f
BB B o a rr r d PP P r e s i d e n t
Sandie Fredericks, B o a r d P r e s i d e n
VV V i c e PP P r e s i d ee e n t
Sean South, V i c e P r e s i d e n
S e c r e t a rr
r y
Cherie Felsch, S e c r e t a r
T r e a s u r e r
Ann Bardy, T r e a s u r e
Scott Ehlen
Leslee DeFazio
Dianne Jared
Linda Pinkham
Charles Sievers
Our Staff:
Amy Sugimoto, ,
, E E x x e e c c u u tt t t i i v v e e DD D D i i r r e e c c tt t t o o r
r
F u n d D e v e l o p m e n t C o oo o r d i n a t o r
Amanda Hutchinson F u n d D e v e l o p m e n t C o o r d i n a t o
Suzie Goodenough, P a t i e n t C a r e C o o r d i n a t o r
P a t i e n t C a r e C o o r d i n a t o r
Walking the talk…
o u r p l a n n i n g c o m m i t t e e:
L e s l e e D e F a z i o , W a l k C h a i r
A m y S u g i m o t o , E x e c u t i v e D i r e c t o r
A m a n d a H u t c h i n s o n , F u n d D e v e l o p m e n t C o o r d i n a t o r
L i n d a H a y s , F a m i l y T e a m C h a i r
S c o t t & W e n d y E h l e n , R e g i s t r a t i o n & F i n a n c e
S a n d i e F r e d e r i c k s , F o o d a n d B e v e r a g e
A n n B a r d y , F i s c a l
L i n d a P i n k h a m , P u b l i c R e l a t i o n s
C h e r i e F e l s c h , P u b l i c R e l a t i o n s
D i a n n e J a r e d , O p e r a t i o n s
A s s e m b l y M e m b e r D a v e J o n e s , H o n o r a r y C h a i r

Investing in our Programs—Sponsors
H H o o m m e e e R R uu u u n n S S p p o o n n s s o o r r :
:
ADL (Aids for Daily Living)
T T r r i i p p l l e e P P l l a a y y S S pp p o o n n s s o o r r s s :
:
L a B o u
Tr i - C i t y P r i n t i n g
S T L ( S a c r a m e n t o T h e a t r e a n d L i g h t i n g )
B r o w n C o n s t r u c t i o n
E x q u i s i t e E v e n t s & E n t e r t a i n m e n t
D D o o uu u u bb b l l e e P P l l a a y y S S pp p o o n n ss s s oo o o r r s s s :
:
A m e s - G r e n z I n s u r a n c e
S M U D
S u t t e r M e d i c a l C e n t e r
D a v i s F o o d C o - o p
W a l - M a r t
C a r t o n P l a z a
R e c o l e c t
B P P r o d u c t i o n s
U n c l e J e r s C o o k i e s
C a l i f o r n i a A m e r i c a n W a t e r
R o t a r y C l u b o f W e s t S a c r a m e n t o
FF F F i i r r s s t t t B B a a ss s s e e SS S S p p o o n n ss s s oo o r r s s :
:
Sponsors Sponsors
D a v i s A C E , U C D AV I S , B a y A l a r m , C o d y ’ s R e s t a u r a n t ,
S w i n g a t C a n c e r, B u t t o n Tr a n s p o r t a t i o n , B u c k h o r n G r i l l
W e l l s F a r g o , R o a r i n g L i o n E n e r g y D r i n k s
T T h h a a n n k k s s f f o o r r h h e e l l p p i i n n g g w w i i t t h h a a w w a a r r e e n n e e s s s s — M M e e d d i i a a :
:
The Eagle • ESPN Radio • KCRA
The Sacramento Bee • Emma Close to Home
Sacramento Magazine • Carmichael Times
KFBK

F F o o o o d d & & E E nn n n t t e e r r t t a a i i nn n n m m e e nn n n t t S S p p o o n n ss s o o r r s s s !
!
B B r r e e aa a k k f f a a s s t t p p r r o o vv v i i dd d ee e e d d d b b y y : : LABOU
L L u u n n c c h h p p r r o o v v i i d d e e d d b b y y :
:
L u n c h p r o v i d e d b y : Rotary Club of West Sacramento
D D e e s s s s e e r r t t p p r r o o v v i i d d e e d d b b y y :
:
D e s s e r t p r o v i d e d b y : Uncle Jers Cookies
W W a a t t e e r r p p r r o o v v i i d d e e d d b b y y :
:
W a t e r p r o v i d e d b y : California American Water
E E n n e e r r g g y y d d r r i i n n k k s s p p r r o o v v i i d d e e d d b b y y :
:
E n e r g y d r i n k s p r o v i d e d b y : Roaring Lion Energy Drink
F F o o o o d d s s a a m m p p l l e e s s p p r r o o v v i i d d e e d d b b y y :
:
F o o d s a m p l e s p r o v i d e d b y : Davis Food Co-op
M M u u s s i i c c c k k i i n n d d l l y y p p r r oo o o vv v v i i d d ee e e d d b b y y :
:
• Rumors — Sound & Production
• Cathy Speck and Linda Duval
• Hardwater
M M C C :
:
P P h h o o tt t o o g g r r a a pp p h h y y : : : David Goard
M M a a s s s s a a g g e e T T h h e e r r a a p p i i s s t t s s :
:
J J a a z z z z e e r r c c i i s s e e S S p p e e c c i i a a l l i i s s t t s s :
:
C C l l o o w w n n s s :
:
M C : Sonny Gollardo—Exquisite Events & Entertainment
M a s s a g e T h e r a p i s t s : Mark Chernyavsky
J a z z e r c i s e S p e c i a l i s t s : Trista Harmon
C l o w n s : Alan Spahr, Dennis Wilson, Mary Czech
F F aa a c c e e p p a a i i n n t t e e rr r s s :
:
Dana Ford & Family, Face painters
Mallory Blaylock, Face painter
R R aa a a f f ff f l l e e :
:
Nina Blaylock, Margo Johnson, Stephanie Refnes,
Tracy Scott, Sydney Ford

Our volunteers
T T h h a a n n k k y y o o u u f f o o r r m m a a k k i i n n g g t t h h e e dd d a a y y s s p p e e c c i i aa a ll
l …
A r l e s s B o t t a , N i n a B l a y l o c k , S e a n S o u t h , L i n d a
P i n k h a m , C h e r i e F e l s c h , D i a n n e J a r e d , A n n
B a r d y , S c o t t E h l e n , W e n d y E h l e n , N i n a B l a y l o c k ,
C r a i g S u g i m o t o , M a t t D e f a z i o , L e o n a r d J o h n s o n ,
W e n d y H i l t z , D e b b y H i l t , D e b b i e V a n c e R e g a n ,
L a u r a R e g a n , C i n d y K r e t z e r , D a n i e l E h l e n , J o h n
P i t c l , J o n i P i t c l , K a y l a M o n k , P a m S m i t h , S u z i e
G o o d e n o u g h , B r i a n P a r k e r , C a r o l P a r k e r , L i s a
S t a n l e y , K a t h y T u l l o s , O a k m o n t H i g h S c h o o l , R o b
F o r d , D a n a F o r d , M a r g o J o h n s o n , S t e p h a n i e
R e f n e s , T r a c y S c o t t , S y d n e y F o r d , T r i s h E v e r e t t ,
K i m C r o c k e t t , D a n a F o r d , M i s s y J o h n s o n ,
J e n n i f e r R u b i n , E m i l y D e f a z i o , M a l l o r y B l a y l o c k ,
C a t h y B e n n e t t , E v a n D e f a z i o , E t h a n S u g i m o t o ,
N i c k D e f a z i o & a l l t h e k i d s f r o m O a k m o n t H i g h !
V V o o l l u u n n t t e e e e r r s s a a r r e e t t h h e e s s p p i i r r i i t
t
b b ee e e h h i i n n d d d t t h h e e A A L L S S S m m o o v v e e m m e e n n t t !
!
V V o o l l u u n n t t e e ee e r r o o f
f
t t hh h e e y y ee e a a r r !
!
C C h h ee e rr r r i i e e e F F ee e e l l ss s cc c c h
h

P A L S : M a r t y W e l s h & C a t h y
S p e c k — R i b b o n C u t t i n g ‘ 0 9

Biggest Individual Fundraiser!
Cindy and Terry
Marty & Gary
racing!
M M a a r r tt t t y y WW W ee e ll l s s h!
h!
$10,300
(Over all team raised $14, 556)
W h e e l c h a i r r a c e s … .
Great
Sportsmanship!
Marty and Benny
Maureen and Marty
Terry and Marty racing

Biggest Team Fundraiser
T T h h e e S S p p e e c c t t a a cc c c u u l l a a r r s s !
!
$15,327
Our PALS:
C a t h y S p e c k , T e a m S p e c t a c u l a r , a n d F a m i l y
Cathy’s Team and Family...
Cathy Speck and
Linda Duval
Davis
Food
Co-op

M M oo o o s s t t T T ee e aa a m m S S pp p p i i r r i i t t t g g o o e e s s tt t t o o L L e e e e ’ ’ ’ s s A A r r m m y y !
!

B B i i g g g g e e s s t
t
F F u u n n dd d r r a a ii i s s ee e e r r
r
C C oo o o r r p p oo o o r r aa a t t e e :
:
$ $ 1 1 5 5 , , , 3 3 2 2 7
7
Davis
Food
co•op
I I n n n hh h oo o o n n oo o o r r oo o o f
f
o o uu u u r r P P A A L L S S a a n n d
d
t t hh h ee e e ii i r r S S a a ff f e e t t y
y
D D ii i r r e e c c tt t o o r r ,
,
C C aa a a t t h h y y y S S p p e e c c k
k

E E n n t t e e r r tt t t aa a a i i n n m m e e n n tt t t … … .
.
C C r r a a f f t t s
s
D D oo o g g g g i i e
e
R R e e ff f f r r e e s s h h m m e e n n t
t
B B a a r
r
Fall
Music
&
Craft
R R o o t t a a rr r r y
y
B B a a r r b b ee e e q q u u ee
e e
L L i i v v e e e MM M M u u s s i i c c . . . . .
.
Fair F F aa a a c c e e P P a a ii i nn n t t ii i n n g
g
F F u u n n f f o o r
r
kk k k ii i d d s s oo o o f f a a l l l
l
a a g g e e s s … … . .
.

TT T h h a a n n k k s s t t o o a a l l l l w w h h o o o h h a a v v e e d d oo o o n n a a tt t t e e d d t t o o o t t h h e
e
W W a a l l k k a a n n d d m m a a k k e e w w h h a a t t w w e e dd d d o o p p o o ss s ss s i i bb b b l l e e :
:
A
A.C. Schoultz
Aaron Talbot
Abigail Royse
Adrianne Denning
Adrienne Buckley
Adrienne Clements
Afsheen Mostofi
Ai-Ling Wou
AJ Arriola
Al Ahmadi
Alan Calkin
Alan Duchsherer
Alan Smith
Alberta Aurand
Alex Rodriguez
Alexander Jones
Algimantas Balciunas
Alice McBride
Alice McHugh
Alicia Diaz
Alicia Guerra
Alicia Queirolo
Alison Fouts
Alison Payne
Allan Rabune
Allen Spahr
Allyn Davis
AlphaTRAC Inc
Alva Toca
Alvin Larson
Alvin Novo
Amanda Goss
Amber Chisum
Ambrose Roy
Amelia Swensen
Ames Grenz
Amy Hendrix
Amy Miller
Amy Rexford
Andrea Chertoff
Andrea Watkins
Andrew Bornhoeft
Andrew Schmiedt
Angela Simon
Angela Yee
Angie Mescher
Ann Bacon
Ann Bardy
Ann Crook
Ann Dayton
Ann Fulweiler
Ann Gargaetas
Ann Larsen
Ann Panek
Ann Stubbe
Anna Ampania
Anne Butler
Anne Charles
Anne Defazio
Anne Maretti
Anne Warmerdam
Anne and Chris Jacobs
Anthony Kroker
Antoinette Cordeniz
April Ford
April Galash
April Kamen
April Whitney
Arlen Ness Enterprises
Arlene Poole
Arlene Sandoval
Arlene Weston
Arless Botta
Art Payne
Arwen Wacht
Asha Brock
Ashley Burchett
Ashley Stone
Audrey Mueller
B
Barbara Ardoin
Barbara Black
Barbara Burman
Barbara Coman
Barbara Crabbe
Barbara Doyle
Barbara Fritz
Barbara Kahl
Barbara Kelley
Barbara Lahmann
Barbara Moore
Barbara Perkes
Barbara Richardson
Barbara Speck
Barbara Whatcott
Bart & Joanie Jacka
Beatrice Souza
Becky Chavez
Bernadette Kaldani
Bernard Borrow
Bertha Klooz
Beta Sigma Phi
Beth Foondos
Beth Meyer
Bethany Harris
Bethel Riley
Bette Marley
Betty Mattison
Betty Van Nort
Bev Greene
Beverly Collard
Beverly Edwards
Beverly Karg
Beverly Petrovic
Beverly Petrovic
Beverly Purdue
Beverly Purdue
Beverly Silva
Beverly Taylor
Biene Vallee
Bill Batchelder
Bill Haynes
Bill Hughes
Bill Johnson
Bill Pursell
Bill Tuttle
Bill & Raydeen Gilles
Bill and Kay McMillan
Bill and Naomi DeFazio
Billie Cummins
BJ Parker
Björn Oskarsson
Blaine Donnelson
Bob Anderson
Bob Butcher
Bob Lovell
Bob Nethercott
Bob Wright
Bob & Cathy Noyes
Bob & Nellie Chambers
Bob and Darlene Irvine
Bobbie Odehnal
Bonnie Jones
Bonnie Oudsema
Bonnie Rhoads
Brad & Lisa Knott
Bradford Wright
Bradley Nelson
Brandon Bogle
Brandon Maniscalco
Brenda Sieglock
Brenda Young
Brett Dunham
Brian Burkeen
Brian Burkeen
Brian Clark
Brian Klapac
Brian Parker
Brian Weiss
Bridge Richey
Bridgette McGuire
Brieanne Baumbach
Brit and Sharon McLin
Britni McWhorter
Bronwyn Murphy
Bruce Peters
Bryan Craver
Bryant Green
Bryce & Tiffany Holladay
Buckhorn Cafe
Butch Cox
Button Transportation
C
C Crowe
Candace Cox
Candice Garbers
Carbillo Civic Club
Carey Powell
Carl Schmiedt
Carlos Carvajal
Carlton Plaza
Sacramento
Carmen Crujido
Carol Bell
Carol Beoshanz
Carol Blake
Carol Fiore
Carol Heitman
Carol Howe
Carol Hutcheon
Carol Lundberg
Carol Neasbitt Harless
Carol Niles
Carol Penney
Carol Penney
Carol Ribet
Carol Salatino
Carol Tanaka
Carol Thomas
Carol VonBerg
Carol Ann Davis
Caroline Lee Baker
Caroll Terra
Carolon Rodda
Carolyn Brennan
Carolyn Coker
Carolyn Doggett
Carolyn Doyle
Carolyn Gale
Carolyn Girado
Carolyn McGill
Carolyn Recht
Carolyn Shadinger
Carolyn Turner
Carren Chrstensa
Carrie Cammack
Carrie Holland
Carrie Holler
Carrie Schoultz
Cary Miller
Casey Denning
Cassandra Perrignon
Catherine Bennett
Catherine Boersma
Catherine Goodin
Catherine Ladig
Catherine Miller
Catherine Popell
Cathy McAlister
Cathy Munro
Cathy Murray
Chad Moore
Charlene Charles
Charlene Fitzpatrick
Charles Allred
Charles Arnold
Charles Gomes
Charles Hart
Charles LaPorte
Charles Troglio
Charles Walters
Charles and Terry Petit
Charmaine Thomas
Cheri Schoenborn
Cherie Felsch
Cheryl Cox
Cheryl Noack
Cheryl Ward
Chet Allen
Chris Anicich
Chris Major
Chris Mannix
Chris Perillo
Chris Steidlmayer
Chris Walton
Chris & Sandi Saha
Christian Mason
Christina Arruda
Christina Young
Christine Bailey
Christine Bogle
Christine Conrad
Christine Meritt
Christine Parra
Christine Pereira
Christine Rakela
Christine Salonius
Christopher Conley

Christopher Mulligan
Christy Menig
Christy Munro
Christy Thomas
Chu Ying Yang
Chuck and Nita D'Arcy
Cindy Ferguson
Cindy Johnson
Cindy Schlenz
Claire Poole
Clarence and Elsie
Jardine
Claudia Cummings
Claudia Cunningham
Claudia Johnson
Claudia Ojeda
Cleo Constantin
Cody's Restaurant
Cole Hawkins
Coni Staff
Connie Murphy
Cordelia Min
Cordelia Sander
Corine Herrera
Cory Merz
Countertops Unlimited
Courtney Nehls
Courtney Welden
Craig Koury
Crystal Ballard
Crystal Holt
Cyndee Doyle
Cynthia Nelson
Cynthia Oseto
Cynthia Rice
Cynthia Wallis
Cynthia Williams
D
D. Sloan
Dale Boliba
Dale Stubbs
Dalena Spahr
Dan Gray
Dan Hayes
Dan Thomas
Dan Tokutomi
Dan & Carol Quayle
Dan & Cherie Porter
Dana Moe Halley
Daniel Harrigan
Daniel McGarry
Daniel Murphy
Danielle Dunphy
Danielle McKenna
Danny & Jamie Stone
Daradee Murray
Darlene Jemmings
Dave Moss
Dave Webb
David Blood
David Botelho
David Brierly
David Combellack
David Comings
David Denton
David Eagleton
David Ferencik
David Gill
David Lanza
David Legnitto
David Nadolna
David Oakes
David Powell
David Schreibman
David Smith
David Van
David Welsh
David Yamamoto
David and Erla Goller
Davis Ace
Davis Food Co-Op
Davis Machine Shop
Dawn Marriot
Dawn Pinkham
Dawn Sharifan
Dawna Keels
Dayne Webb
DE Dennis
Dean Hudgins
Deanna Desin
Deanna Yasbek
Debbie & Ray Myers
Debby Quartucy
Deborah Bradshaw
Deborah Callaway
Deborah Davis
Deborah Redmond
Deborah Rule
Deborah Shattuck
Debra Claus
Debra Espenson
Debra Lemmon
Dee Ferreira
Della Mae Lanter
Denise Brock
Denise Crayton
Denise Dougarian
Denise Jabusch
Denise Malvetti
Denise Pulver
Denise Rodriguez
Denise Williamson
Dennis Burtraw
Dennis Donahoe
Dennis Hock
Denyse Nishio
Derek Lau
Desiree Hinsley
Devin McGuire
Dewana Ljung
Dian Graves
Diana Bryant
Diana Chamberlain
Diana Houston
Diana Varcados
Diane Despopoulos
Diane Fullaway
Diane Graf
Diane Gumina
Diane Hintz
Diane Jackson
Diane Medina
Diane Rankin
Diane Reppun
Diane Smith
Diane Sparks
Diane Von Rajcs
Diane Walker
Dianne Baczynski
Dianne Jared
Dianne Mannina
Dianne McKenzie
Dolores Johnson
Domingo Boites
Don Albee
Don Leigh
Don Nordsven
Don Oliver
Donald Peek
Donald Quinn
Donald Wangberg
Donald and Jean
Darkenwald
Donita James Troglio
Donna Bezdecheck
Donna Graf
Donna Salah
Donna Singer
Donna Wendell
Dora Trujillo
Doran McDaniel
Doreen Carlson
Doris Holm
Doris Potter
Dorothy Carey
Dorothy Gloyd
Dorothy Hailey
Dorothy Menkins
Doug Dougarian
Doug Kroker
Doug Schwarz
Doug & Linda Pinkham
Doug & Sheila
Van Zandt
Douglas Turner
Douglas Walter
Doylanne Wade
Drew Goldsby
Drew & Jen Crawford
Dustin Ampania
Dwight Miller, DDS
E
Ed Doty
Ed Hung
Ed Lynch
Ed Meyer
Ed Sieckert
Edith Sun-Rudolph
Edward Gilligan
Edward McGowan
Edward McMahon
Eileen Keaveny
Eilene Hudgins
Elaine Harrigan
Elaine Kihara
Elaine Owens
Elaine Talley and
Jeff Roy
Eldarae Cvitanov
Eleanor Hoffelt
Eleanor Olsen
Elisa Estremera-Pasky
Elizabeth Chavez
Elizabeth DeFazio
Elizabeth Forrester
Elizabeth Jones
Elizabeth Moore
Elizabeth Nielsen
Elizabeth Petrone
Elizabeth Smith
Elizabeth Tausczik
Elizabeth Wineinger
Ellen Clear
Ellen Cody
Ellen DiMichele
Ellen Johnson
Elmo Daley
Emily Caceres
Emily Merideth
Emily O'Hair
Emily and
Collin Nichols
Emma Coats
Enoch Platas
Epi Sauseda
Eric Harris
Eric Pitzer
Eric Salonius
Eric & Mikala Graf
Erik Koslow
Erin Brooks
Erin Newman
Ernie Hammel
Ettore Minor
Eugene Speck
Evelyn Campbell
Evelyn Horangic
Evelyn Ignacio
Evie Jean Novinger
F
Felicia Hassett
Field Tower
Fiona Rodrigues
Fitzgerald Miller
Fleurette Kersey
Florence Stechmann
Fox Susan
Fran Bera
Frances Cordova
Frances Haynes
Frances Johnson
Francine Little
Frank Aochi
Frank Baptista
Frank Fox
Frank Vouri
Franklin K and Sandra K
Yee Foundation
Fred Heitfeld
Frederick Giles
G
Gabe & Hollie Sheerer
Gabel Gloria
Gabrielle Daniel
Gail Mangarin
Gail Mathis
Gail Seymour
Gail Willis
Gale Southard
Gansesan Venkatapathy
Gaosheng McCauley
Gary Graves
Gary Harrison
Gary Moore
Gayle Dameron
Gayle Plummer
Gayle Rounds
Gaynel Hensley
Gene Miller
Geoff & Nancy Loman
George Knott
George Romine
George Rush
Georgia Bailey
Georgia Kustura

Georgie Harrison
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Harold Beasley
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IATSE Local 50
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We appreciate all of our donors and apologize if we missed anyone
or have misspelled any names in this process.
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Y
Yolanda Tejada

Page 19
Lines from Lee… A 22-year ALS patient
Living with ALS
Lately, there have been news articles and events about ALS
suicide or physician-assisted suicides. I, myself, firmly believe in
a patient’s right to make their own decisions affecting their life
and death.
But I also believe there are more reasons for living than for dying.
The most important reasons for living are family, friends, important
events in our lives that we want to be part of, and goals we
want to accomplish in our lifetime.
I have read about how patients say they want to spend as much
time as possible with their family, spouses, children, and grandchildren.
They want to be around to attend weddings, graduations,
birthdays of grandkids, and to accomplish important goals
in their lives.
Upcoming Events
Over the past 20 years, I have been afraid of dying. Not a day goes by that I do not think about it. I
have spent precious time doing so much worrying when I could have spent that time enjoying my life
and those I love. I am not as afraid of dying as I am afraid of dying and leaving my family.
Patients used to receive a 2-5 year lifespan after diagnosis. Now, there are patients who have
slower progression. 10% of ALS patients live 10 years or more and 5% live 20 years or more.
For you, as a patient, to be in charge of your life or death, it is important that you tell your family and
caregivers your wishes. You need to create an Advanced Directive Document or Living Will so everyone
will know what you want to do when you are unable to communicate.
This planning is the best way for you to control your own destiny whether it is from feeding tubes,
nasal ventilation, or tracheotomy. Each one of you will have to make your own individual decisions
about how you deal with the ALS diagnosis and how you wish to live with it.
All you, as patients, need to know the importance of knowing about available treatments and options,
and that you do not have to fear living in pain or suffering from depression. There is help out
there for everyone no matter what stage you are in.
Personally, at this time in my life I plan on going on a tracheotomy and spending as much time, for
as long as I can, with my family and friends.
It is up to each of you to make that decision for yourself because we will all be there eventually.
Life is just too precious to give up!
PALS Lee Jared
Note: Most of these comments are my own feelings and some are from various articles I’ve read,
including information from Mary Lyon, R.N., M.N. and Walter Bradley, D.M., F.R.C.P. from the University
of Miami. In addition, I also get opinions from other patients’ life stories and the Internet.
If you have any questions or suggestions for future articles, please e-mail me at wayland55@comcast.net
Support
Upcoming Events!
Sacramento Support
Group
&
National Caregivers
Month Celebration
(Break-out sessions +
Respiratory Therapist
Specialist)
Saturday, Nov 21st
2800 L Street
10:30am-12:30pm
Chico Support Group
Wednesday, Nov 18th
Enloe Rehab Center
340 West East Avenue
4:00pm-6:00pm
We will have Guided
Visualization and
Breathwork training
Jan Condon O.T. will be
teaching safe transfers
Sacramento Support
Group
Carlton Plaza
1075 Fulton Avenue in
Sacramento
Wednesday, Dec 2nd
2:00pm-4:00 pm
PALS & Caregivers
Holiday “”Brunch” themed
Party
Sacramento Support
Group
Sutter Cancer Center
Saturday, Dec 12th
2800 L Street
10:30am-12:30pm
Holiday treats will be
provided
For information on please
call (916) 979-9265

Giving Back!
Greatbatch, Inc. and Buffalo Bills Team Up
With Trent Edwards to Fight Lou Gehrig’s Disease
By Gary Wosk, Staff Writer
In honor of his well-known high school coach Charlie Wedemeyer, who
has ALS, Buffalo Bills quarterback Trent Edwards launched a new program
that helps people with ALS and their families each time he leads
his team to a touchdown.
“Trent’s Touchdowns for ALS,” which began on Sunday, October 11th
when the Buffalo Bills play the Cleveland Browns has two objectives:
raise money for The ALS Association by encouraging fans and corporations
to pledge a minimum amount of money for a minimum number
of touchdowns, and to raise awareness about the disease.
In the Board Room with Leslee Defazio
Page 20
“We’re counting on Trent to have his best season yet and that the Buffalo
Bills go to the Super Bowl,” said Jane H. Gilbert, president and CEO of The Association. “We
would like to see Trent lead the Buffalo Bills to as many touchdowns as possible so that The ALS
Association can intercept and put to an end this deadly disease.” The monies raised go to support
numerous free services and programs provided to people with ALS and their families.
“I’m pleased to partner with The ALS Association and to be part of the efforts that improve quality
of life for individuals and families coping with ALS, while creating awareness and supporting research
for a cure,” Edwards said.
Edwards’ passion for helping The Association fight ALS stems from his own very personal connection
with the disease. While attending Los Gatos High School in Calif., Edwards played for Wedemeyer,
who was diagnosed with ALS in 1977 and continues to coach today. His life story was
chronicled in the PBS documentary “One More Season” and the movie “Quiet Victory: The Charlie
Wedemeyer Story.” Wedemeyer is helped by the Greater Bay Area Chapter of The Association.
“Coach Wedemeyer and his wife Lucy are an inspiration to me on and off the field,” said Edwards,
honorary chairperson of the chapter’s Walk to Defeat ALS fundraiser in Buffalo. “It is for them and
all the people whose lives have been affected by ALS that I dedicate this program which I hope will
be supported by fans of the game everywhere.”
It was just as we had in envisioned it, a full day with lots of things to
do. Many enjoyed the complimentary food by La Bou, face painting,
kids crafts, clowns, crafts store, doggy rest area, live music, various
vendors, walking and the barbecue. It was a happy day, for many as
well as an emotional day for others. As the walk started, we had the
traditional doves take flight, with the cutting of the ribbon by Cathy
Speck and Marty Welsh. We had some enthusiastic girl scouts handing
out bottled water at the half way mark. We had wonderful donated
raffle baskets, in which we need to say, 'Thank you', for those who
donated. Thank you to all for helping make our 'Walk to defeat ALS,
2009' a great success. Sincerely, Leslee Grenz-DeFazio (Walk
chair and Team captain for: 'Strike out ALS for Les')
Leslee and Matt Defazio at
Walk to Defeat ALS 2009

Honoring Caregivers in November page 21
The ALS Association is encouraging caregivers to voice their concerns
about their own health as well as the people who require
their help around the clock during National Family Caregivers
Month in November.
The theme of National Family Caregivers Month is “SpeakUp” and
when caregivers speak up The ALS Association is there to listen
and help make their lives as easy as possible.
Betty Koch
Brigitte
Hildebrandt
Carol Beoshanz
Carol Poncia
Carol
Warmerdam
Cecilia
Schwierzke
Charles Hunt
Christine Boriack
Deborah Evans
Debrah Ann
Johnson
Donna Leuchars
Doris Holm
Doris McVicker
Dottie Schulman
Elisabete Darosa
Ellen Miner
Gretel Gruener
Helga & Heinz
Lehrach
Ida & Marvin
Thank You For Your Support!
October 2009 Donors:
Steenburgen
James Weeks
Jean Masamori
John McPherson
Joseph Reynolds
Joseph
Schoennauer
Karl Hallfeldt
Kassie Loehr
Lieselotte Meyer
Linda Walther
Marie Huefner
Marianne Dodge
& Family
Maybelle Church
Monka Fosseen
Pam Circo
Patricia Samora
Peter Maris
Ruby
McIntosh-Howell
Ruth Friedrich
Shirley
Culbertson
Terry Todd
Tillie Schock
Vera Boriack
Tammy Brierly and her caregiver and
husband Dave!
“Most caregivers do not have the time to ask for help because they are too busy meeting the needs
of others,” said Sharon Matland, vice president of patient services for The Association. “It is our responsibility
as an organization to be extra diligent in reaching out to them.”
As part of National Family Caregivers Month, The Association is launching “Show You Care,” a national
campaign to recognize some of the thousands of local primary caregivers critical to protecting
and enhancing the quality of life for individuals living with ALS. The daily challenges faced by caregivers,
whose own health is adversely affected by providing care on a round the clock basis, are
detailed in a series of profiles featured on The Association’s website at www.alsa.org.
Loving donations have been made
in memory of the following PALS:
Jean Meyers
Gordon McCutchen
Sherrie Willis
Juan Carlos Zanni
Bev Samora
Mitzi Baumbach
Vern Putnam
Fred Banfield
Donald Clark
Bill Singer
Tony Mastrantonio
Kenneth McIntosh
Wally Beard
We appreciate all of our donors and try very hard to incorporate all of you into our newsletters.
We apologize if we have missed anybody in this process.