April 2011 - The ALS Association Greater Sacramento

Advocacy 2717 Cottage Way, Suite 17
The ALS Association, Greater Sacramento Chapter Newsletter
Patients • Caregivers • Families • Donors
Proudly serving 24 counties in Northern California
from the Sierras to the Oregon Border
Sacramento, CA 95825
Phone (916) 979-9265
Fax (916) 979-9271
www.alssac.org
April 2011
Support Groups 2
Spring Tea! 3
Lend a Hand! 4
Ask the Doc 5
Attitude of
Gratitude
6
Advocacy 8
Coconut Oil 9,10
Debra’s Story 11
Research
12,
13
The NCAA win! 14
Tips on Using
eBools
Thank you’s
and a Special
Note
15
16
Dear Friends:
Spring is here and with it comes the opportunity to get out and enjoy
the outdoors while supporting the Greater Sacramento Chapter of The
ALS Association. As always, we’ll have a myriad of events taking place
in spring to promote the ALS issue by raising the consciousness of the
community and educating them on the devastating impact of ALS.
I’d like to highlight two very special upcoming events, thank the coordinators
of each event for their hard work, dedication and commitment
to the Mission of ALSA, and invite you to participate by purchasing a
ticket, making a donation or volunteering. Sponsorship opportunities
are available for both events.
Mother’s Day Spring Tea:
As past board chair, Sandie Fredericks brings her heart, passion and
soul to everything she tackles on behalf of ALSA. Having lost her
brother in law to the disease she’s very familiar with how the disease affects the patient, caregivers and
family. Her commitment to hosting the Tea is unwavering.
This year her co-chair, Linda Hays will be her right hand during the planning process. Like Sandie, Linda
lost a loved one (her brother Joe) to the disease. She’s fought for ALS Awareness, funding, patient rights
and advocacy ever since!
Summer Soiree: A Kentucky Derby/Belmont Stakes Dinner Auction:
Celebrate the Belmont Stakes in high style at the First Annual Summer Soiree, benefitting The ALS Association,
Greater Sacramento Chapter. The Derby themed dinner auction will take place on Friday night,
June 10 th at the Sacramento Horseman’s Association. The evening festivities will kick off at 5 pm and include
a traditional derby dinner, silent auction, live horse show by the Painted Ladies, auctions, cocktails,
dancing, and the spirit of all those fighting for a cure, coming together to raise funds for ALS.
SAVE THE DATE
Friday, June 10th
Live Music, Silent & Live Auction, Dinner, Dancing
A very special thank you to the event host and hostess, Mr.
and Mrs. Larrie Grenz. Together they have seen how ALS
can impact a family. One of ten kids, Larrie lost his brother
Les Grenz to ALS. Since then his company, Ames Grenz Insurance,
has supported patients by providing volunteers and
mentors to PALS, as well as hosted numerous events at their
beautiful Carmichael Estate.
Thank you to Sandie, Linda, Larrie and Diane for their ongoing
commitment to helping ALSA find a cure and provide
compassionate care and support to those in need.
Warmly,
Amy Sugimoto
Executive Director
Join us for
Mother’s Day Spring Tea &
Luncheon
Saturday, April 23rd

Page 2
Advocacy
Support Group Meetings
S A C R A M EN T O ( D o w n t o w n )
S u t t e r C a n c e r C e n t e r
2 8 0 0 L S t r e e t
S a c r a m e n t o , C A 9 5 8 1 6
Saturday, April 16th
Saturday, May 21st
Saturday, June 18
Saturday, July 16
Saturday, August 20
10:30am –12:30pm
PALS & CALS
(Breakout Session)
Snacks and Beverages are
provided at no cost.
Parking: Patients can be dropped off at
the front of Sutter Cancer Center near
the valet.
If you are in need of financial assistance
for parking, please let us know—
reimbursements are available for PALS
and CALS.
S A C R A M EN T O ( F u l t o n A v e )
C a r lt on Plaza
1 0 7 1 Fu lt on Ave.
S a cr am en to , C A 9 58 2 5
Thursday, April 14th
Thursday, May 12th
Thursday, June 9th
Thursday, July 14th
12-2 pm
R E D D I N G
A t t h e h o m e o f R o n a n d
C a r o l S m i t h .
A p r i l 2 8 t h
12- 2 p m
For more information on
support groups in Redding,
please contact
Nancy Wakefield
at (916) 979-9265
STOCKTON
Plymouth Square
1319 North Street
6th Floor Conference Room
Stockton, CA 95202
Thursday, April 7th
Thursday, May 5th
Thursday, June 2
Thursday, July 7th
Thursday, August
10am—12pm
PALS & CALS
Snacks and Beverages are provided
at no cost.
To RSVP or for more information
please contact:
Caryn Cochran-Branson, Patient
Services Coordinator at (916) 979-
9265 or ccochranbranson@alssac.org
UPCOMING EVENTS:
Saturday, April 9th—The Davis Film
Festival (ALS, Sacramento Chapter is
the beneficiary)
Wednesday, April 13th—The Granite
Bay High School Concert (ALS, Sacramento
Chapter is the beneficiary)
Saturday, April 23th—Mother’s Day
Spring Tea at Stockton Blvd. La Bou
Saturday, May 14th—Rittman’s Ride
(Motorcycle Run)
Friday, June 10th —
Summer Soiree: Celebrating the Kentucky
Derby/ Belmont Stakes
Sunday, June 12th—Bingo at the
Oddfellows Hall in Davis, CA
Friday, July 1st– Walk Kick Off at
Raley Field
Tuesday, August 9th—Cody’s Dinner
in Winters, Ca.
Thursday, September 1st -
Ladies Night Out at the home of
Diane Grenz
Sunday, September 18th—
Walk for a Cure, Sparks Marina Park
Reno/ Sparks
Saturday, October 1st—Walk to Defeat
ALS @ Raley Field, West Sacramento
HELP WANTED—Special Event Volunteers
The Greater Sacramento Chapter is seeking a volunteers to help with our spring event season. No experience
needed, just the willingness to help and the kindness to give back—we ’ ll train you on the rest! If
you ’ re interested in helping with any of the above events, please call our Chapter office at
916-979-9265.

The motivation behind the Mother’s Day Tea
PAGE 3
Linda Hays joined the ALSA Board of Directors in 2010 as a result of wanting to channel
her passion into finding a cure. Her brother Joe was born in April 1967. She was 19 at the
time. Joe was the last of six children and there was 16 years difference in age to his nearest
sibling. Linda often dressed and fed Joe as he was less than two years older than her
oldest son.
In 2006, during Christmas Linda’s family noticed that Joe seemed to be talking differently.
He was always a quiet person and didn’t talk much, but it became obvious that something
was wrong. Joe made an appointment with his doctor who in turn sent him to an ear,
nose and throat specialist. From there he went on to Forbes Norris Research Center
where he was officially diagnosed with ALS in June of 2007 by Dr. Robert Miller. Joe
passed away in February of 2009 at the age of 41 years old.
Linda continues to support the Greater Sacramento Chapter in Joe’s honor and enjoys
volunteering at the support group meetings and at the Forbes Norris Satellite Clinic in Sacramento.
She has a strong understanding of what it’s like to lose a loved one to ALS and the frustration and hardship
caregivers endure while watching a loved one battle the disease.
As Joe’s primary caregiver he eventually moved into our home. Joe did as much as he could on his own, but the disease
took his body quickly. I lived for brightening Joe’s day and still look back and treasure the things we did together.
Besides co-hosting this years Mother’s Day Spring Tea, Linda is a strong Advocate for ALS on a national and statewide
level. She will join the Sacramento staff in DC for ALS Advocacy Day and help spread ALS awareness.
A note from Sandie about the tea…..
With spring time upon us; it is the time of year I find refreshing with new life, new birth, and
beautiful flowers all around. I am also reminded of why this tea party happens every year. It
really started as a way to remember my brother-in-law Paul and the many PALS that are suffering
with ALS, and to give back to the Sacramento Chapter who continue to be instrumental in supporting
and helping bring quality of life to our PALS. It was a way to help raise money to find a
cure—you know one small step leads to a bigger step and bingo we have a cure.
I have found that it has become a kind of healing for me and an opportunity to bring people together
to relax, a moment of loveliness to enjoy each other – A cup of tea!
Sandie Fredericks, past Board Chair
Thank you to LaBou Café for hosting
our venue for the upcoming Spring
Tea. 2248 Stockton Blvd. Sacramento,
CA 95817
Mother’s Day
Spring Tea & Luncheon
Saturday, April 23rd
Noon
Special Presentations by:
Dee Norris, Forbes Norris Research
& Treatment Center
Lee Jared, PALS
Viki Spector, Village Hat Shop
Entertainment:
Bingo • Raffle • Hat contest
Live music by Pam Pamperin
Tickets$35 PP, PALS $25. Call 916-979-9265 to reserve your
ticket.

Lend a hand
Page 4
VOLUNTEERS WANTED:
Office Help: If you have office and/or computer
experience and would like to volunteer
at our Chapter office, please contact
Amy Sugimoto at the Chapter. Duties include:
data entry, answering phones and
photocopying.
Driver: If you live in the Northern California
area and would like to pick up or drop off
loaned medical equipment to our PALS, we
are looking for help three to four days per
month.
Loan Closet Coordinator: call for details.
Special Events: We need volunteers to help
with event set up, clean up, silent auctions,
guest services, and registration.
Thank you to our current leadership for your VISION, VOLUNTEERISM, COM-
PASSION AND SPIRIT in serving those impacted by ALS.
Our Leadership Team for 2011
Scott Ehlen, President, American Greetings
Rich Kline, Financial Advisor, Morgan Stanley
Cherie Felsch, Secretary, UC Davis School of Veterinary Medicine
Dianne Jared, Sacramento Theatre and Lighting
Linda Hays, Sierra Property Management
Steve Pereira, ADL
Sandie Ferguson, Neurology / Sutter Neuroscience Institute
Dr. Bjorn Oskarsson, UC Davis Department of Neurology
Amy Sugimoto, Executive Director
Staff:
Nancy Wakefield, Patient Service Coordinator
Caryn Cochran Branson, Patient Service Coordinator
Alycia Cahill, Office Administrator
Leslee DeFazio, Special Events Coordinator
The Walk Kick Off is Friday, July 1st at Raley Field—Team
Captains are eligible for two tickets to the game, a catered dinner
in the Jackson Rancheria area and a wonderful display of fireworks!
Make sure to register early to get a spot! You can register
at http:/web.alsa.org/greatersacwalk. Thank you to the following
3 teams for your early registration:
Marlene’s Mob ♥ Cross/ Novo/ Moreno
In Memory of Kathleen
Your commitment to The Walk to Defeat ALS, Greater Sacramento Chapter allows us to serve PALS and CALS with support
services throughout the following counties:
Sacramento, Yolo, El Dorado, Placer, Amador, Alpine, Modoc, Trinity, Shasta, Lassen, Tehama, Plumas, Butte, Glenn,
Sierra, Colusa, Sutter, Yuba, Siskiyou, Nevada, San Joaquin, Calaveras, Tuolumne, and Mono.

Ask the Doc Q & A with Edward Kasarskis, MD, PhD
Page 5
Edward Kasarskis, M.D., Ph.D. is Director of the multidisciplinary ALS Center at the University of Kentucky
Neuroscience Center in Lexington, Kentucky, professor in the Department of Neurology at the
University of Kentucky, and Chief of Neurology at the VA Medical Center in Lexington KY.
Q: I find that I sometimes overreact to something I hear, read, or see on TV. Occasionally I start crying;
other times I seem to laugh uncontrollably. Is this something other people with ALS experience,
or might I have another medical problem? Is there anything I can do about this?
A: It’s perfectly normal to experience happy or sad feelings when you have ALS, of course. But if you
find yourself laughing or crying excessively, or if your family or friends feel you are over-reacting to Dr. Kasarskis
situations with more emotion than you typically did, that could suggest a problem. It’s not uncommon for people with
ALS to have what is called “pseudo bulbar affect” (PBA), which is the proper medical term for this set of symptoms.
PBA can occur in people with many different neurologic conditions and is recognized by involuntary, sudden, and frequent
episodes of laughing and/or crying far in excess of situation which may have provoked it. The outbursts can
cause embarrassment and anxiety, particularly when you’re with others. People with PBA may find it difficult to hold
down a job or interact in social situations, and may isolate themselves as a result. One ALS patient of mine with PBA
found that he couldn't discipline his child because he burst out laughing at his son's mischievous antics.
It’s common for people with PBA to wonder how the problem can possibly be related to ALS, but it is. The PBA appearances
are nothing more than exaggerated reflexes, and are yet another hyperactive reflex that reflects the "Upper Motor
Neuron" involvement in ALS. Not surprisingly, people with other conditions, such as multiple sclerosis, stroke, traumatic
brain injury, and other neurologic problems can also exhibit PBA.
For years, people with PBA have been treated with a variety of anti-depressants, with only limited success. There is,
however, a new drug, just approved by the FDA, called Nuedextra® -- a fixed dose combination of dextromethorphan
hydrobromide and quinidine (not quinine) sulfate -- that is effective in reducing PBA symptoms. (In the spirit of full
disclosure, the University of Kentucky participated in the evaluation of the drug as a clinical trial study site, but there is
no other potential conflict of interest). Neudextra may be a useful medication for people who find their episodes of
laughing or crying interfering with their activities of daily living and quality of life.
I suggest you discuss your own personal situation with your physician. He or she will help you decide whether your
symptoms are significant enough to warrant taking the medication (which is given twice a day), and if the potential
benefits make the drug worthwhile for you.
If you would like to submit questions for a future Q & A, please send your questions to Amber Walters at awalters@alsa-national.org.
The future is in your hands.
Dream with us.
Few of us will actually change the
course of history or write the great
American novel. But a legacy gift to
The ALS
Association, through your will or
living trust, can help ensure that
our shared dream of a world without
ALS becomes a reality. Help us
keep hope alive for those
battling ALS by supporting our work
to eradicate this devastating disease.
Please contact The Greater
Sacramento Chapter for more information.

Attitude of Gratitude
Page 6
Living on Earth, Living with Mirth, time for Re-Birth by Cathy Speck
I’m baffled, befuddled and operating with a teeny part of my brain.
The rest of my brain is busy reminding me to breathe, hydrate,
don’t lie down flat, and take my meds on schedule. I’m thrilled and
honored to have the opportunity to use my literary skills. I get to
die doing some of my favorite things. Sounds like a song. How
ironic.
My biggest concern I had after being diagnosed with ALS was losing
the ability to talk, sing and perform. Well, that time is here, and
I’m not dead yet. I can still speak, but go hoarse quickly. I might be
able to eek out a song at a wedding or funeral, or castrating ceremony.
I’d love to write something monthly, if I can keep up with the
deadlines. We’ll take it one day a time. I could write about many
facets of ALS, but these will be points of departure. From there,
it’ll flow into dying death after death after life. Living on
earth/living with mirth.
Every column will be fun, funny and honest, bare, vulnerable and
insightful. It’ll be rated “G” or “PG.”
“Hey, Cathy Speck, what will you call the column? Macaroni?” How
about: Speck Speaks — For Awhile.
sports, or being a
show-off and hollering,
“Hey Mom!
MOM! Watch me!”
I was climbing the
towering mulberry
tree and jumping —
while keeping my
eagle eye on lookout
duty for dog doodie.
CALS Linda Duval rockin’ with Mazie
and Sky Serrani
…The most common
form of ALS, called
Sporadic ALS, is estimated
to be 90-95
percent of the ALS
demographics. With
large SOD1 families
(like mine), researchers
have a better chance at following the cells, nerves and proteins
to gain more information about “what, when, why, how” the mutations
are activated. This was huge breakthrough, but that was in
1993. As you can guess, we need so much more money to keep the
research going strong.
as
Ham I am, and in German, my last name, “Speck,” means bacon/ham.
Did I just hear you yodeling, “old lady old lady heeee
whoo, yoohoo old lady oh oh uuu lady I diddle jey de hoeo?”
Which roughly translates to: “arrrrghhhh grrrrruffff,” or, “From
Speck’s Vista Point Spot.” Or “Checking in With Chatty Cathy.”
Please join me in striving to bring ALS awareness to the forefront.
Join hands and vocalize our needs so that the voice of ALS is not
silenced by the calls from so many of the more “popular” diseases:
Parkinson’s, diabetes, prostate cancer, heart disease, breast cancer,
leukemia, AIDS.
Anyhoooooo…I’m typo-ing (as opposed to typing) two, maybe
three fingers at a time, as I occasionally look out our patio door.
Thee daffodils smile back, and the gigantic fern begs me to come
out to play. (I would if I could, but we should have scheduled a
“play date.”) We have a small patio — yes, a cute, north-facing
patio small enough to be a large town populated by the many transient
gnomes who’ve sought refuge here.
Which has nothing to do whatsoever with my intended message.
What I wanted to type is this: ALS — amyotrophic lateral sclerosis
aka Lou Gehrig’s Disease — is not a popular disease. There is no
cure, and no cause has been confirmed. The biggest breakthrough
in research was the identification of a rare genetic mutation
(SOD1), which is known to cause some familial ALS.
This SOD1-type of ALS has been documented in only two percent
of all ALS cases, but that small population is perfect for researchers
to work with since they can follow…
Oh, brother, I’m not a scientist. I wasn’t even one of those kids
who played with chemistry kits. I preferred playing outdoor team
Please spread the news, sound your trumpets, bong your bongos,
wet your whistles any way you’re able and tell your congregation/friends/family/co-workers/dog
park acquaintances to take a
look at our regional office website: www.alssac.org
Thank you berry much. That’s a phrase our mom used when she
was teaching us how
to be polite. But she
didn’t say “berry.”
Now she’s buried in
the Davis Cemetery.
Gallows humor fuels
me.
By the way friends,
have you checked out
the Davis Independent PALS Cathy Speck & CALS Linda Duval put
Film Festival website?
their heads together to support ALSSAC.
It's an ALS Awareness
event, too. www.davisfilmfest.org

SUMMER SOIREE 2011
Page 7

Page 8
Advocacy Day a Success!
Advocacy Day was a huge success. We visited with representatives
in over six offices. A special thank you to all the
volunteers who helped: Hope Smith, Brittany McCue,
Jenny Peterson, Linda Hays, David Buchanan, Gary Watkins,
Jay Glaubitz, Melinda Merinda, Summer McGehee,
Juan Redick, Danielle Dunphy, Dr. Bjorn Oskarsson, Maureen
Gill, Ann Graef, Linda Duval, Cathy Speck and Jennifer
Porter and ALS Association Staff members: Amy Sugimoto,
Nancy Wakefield, Caryn Cochran-Branson and Alycia Cahill.
Advocacy
Helping to spread ALS Awareness, Caryn Cochran-Branson
and Cathy Speck enjoy a fun filled
day at the Capitol
Contact Congress TODAY!
Help Save the ALS Research Program
Congress is proposing to eliminate the ALS Research Program (ALSRP) at the Department of Defense. They
are proposing to take millions in funding away from a program that was specifically created to find a treatment
for ALS, a program that has invested nearly $18 million for ALS research in just the past three years.
We need your help today to save the ALSRP! Please contact your Senators and Representative and urge
them to continue funding for this vital program. Tell Congress that they need to stop ALS, not the funding
that is so urgently needed to find a treatment.
A sample letter, which you can personalize and send directly to your elected officials in Washington, can be
found in the Advocacy Action Center of our website, http://capwiz.com/alsa/home. Please send the letter
today! And tell your friends and everyone in your address book to do the same. Congress needs to understand
how critically important the ALSRP is to the search for a treatment. They need to know how important
this program is to their constituents, the people with ALS they were elected to represent. Contact
Congress TODAY!
If you have any questions, please contact the Advocacy Department at advocacy@alsa-national.org or 1-877-
444-ALSA.
Thank you!!

ALS and Coconut Oil - A one year experience
Page 9
Dr. Mary T. Newport, Author of What if there was a cure for Alzheimer’s and No One Knew? gave us permission to run this excerpt from her website
in the hopes that it helps out PALS. For more information on her or on the effects of coconut oil, please visit her site at
www.coconutketones.com.
I was very pleased to receive this email from a person with ALS
who wanted to share his experience with coconut oil of more
than a year duration. This person gave me permission to post
about this so that it may benefit others:
"ALS started in early 2007, and officially diagnosed with FALS
September 2008.
My age is 62. I started taking 4 tablespoons of coconut oil daily
on November 4th, 2009. I increased it to 6 tablespoons on December
4th, 2009, and increase that to 8 tablespoons per day
the first of January, 2010. I have also been taking 3 ounces (2
shot glasses) of a magnesium/water solution each day, which I
started on Sept. 15th, 2009, which was before I found information
about coconut oil and ketones. Following are the details of
my current and previous status before taking coconut oil.
A. Current symptoms:
1. Weakness in my right leg, primarily in the gluteus maximus
and related muscles affecting the knee.
2. Slight twitching in upper right leg and buttocks.
3. Excessive pain in leg knee. But, this is due to the increased
workload caused by the weakness in the right one. In my
younger days both knees were injured by some accidents, since
then both have given me problems.
4. Poor circulation in my right leg and foot at least during these
months
5. With my toes on the floor I cannot raise the rear of the right
foot and leg upward.
B. Current physical limitations:
1. Walking without pain and the use of two canes.
2. Unable to pivot the right foot as far outward as with the left.
3. When sitting, am unable to raise my right upper leg up off the
chair as much as the left
4. When laying face down on my stomach and my legs outstretched,
am unable to bend my right knee to raise my foot
upwards.
C. Changes since taking coconut oil:
1. Have normal feelings back in my right leg much like the left
one.
2. Have increased muscles strength and size in the upper right
leg. Also the muscles in the left leg have increased in size and
strength.
3. If I place my right foot flat on the floor I can now raise my toes
and the front of my foot upward. I can now tap my right foot to
the music
4. When sitting I can now pull my right foot and calf backwards.
5. When sitting, am able to raise my right leg upward.
6. There is reduced bruising in my right ankle.
7. I can pivot my right foot inward and outward.
8. I can stand on my right leg a little more because it has more
strength.
9. I can roll over in bed with a minimum of difficulty.
10. I can push downward with my right leg.
D. Before taking coconut oil: (Nov. 4, 2009)
1. Difficulty walking due to weakness in my right leg.
2. My right leg felt asleep and non-responsive when walking or
trying to move it
3. The muscles in the upper right leg had reduced in size to the
point I could reach upward on the underside of my leg and easily
feel the leg bones.
4. I had “drop-foot,” and could not pivot my right foot side to
side nor raise it at all.
5. When sitting I could not raise my right leg off the chair.
6. My right ankle was very purple and bruised
7. I had extreme difficulty rolling over in bed because my right
leg would not move on its own.
8. I could not push downward with my right leg at all.
9. Had very thick saliva at night.
10. Muscle vibrations in the left leg, some in the upper right
arm.
In conclusion:
So far I have only experienced improvements taking the coconut
oil and magnesium chloride solution. I plan to continue with
both, and track my progress monthly with more detail just in
case it could be of value to someone later."
Coconut Macaroons
2 egg whites
Dash of salt
1/2 tsp vanilla
2/3 cup sugar or 1/4 cup sugar and 1 to 2 dashes of Stevia extract
1 cup shredded coconut
Directions: Beat egg whites with salt and vanilla until soft peaks form. Gradually add sugar (and stevia), beating until stiff. Fold in
coconut. Coat cooking sheet with generous amount of butter. Drop by the rounded teaspoon onto cookie sheet. Bake at 325
degrees for 20 minutes. Makes about 18 cookies. Each cookie at this size would have about 4 grams of coconut oil.

Page 10
Coconut Oil Dietary Guidelines and Suggestions
By Mary T. Newport MD—To see full article go to www.coconutketomes.com
HOW CAN COCONUT OIL BE USED IN THE DIET?
Coconut oil can be substituted for any solid or liquid oil, lard, butter
or margarine in baking or cooking on the stove, and can be mixed
directly into foods already prepared. Some people take it straight
with a spoon, but for most people it may be hard to swallow this
way and more pleasant to take with food. When cooking on the
stove, coconut oil smokes if heated to greater than 350 degrees or
medium heat. You can avoid this problem by adding a little olive or
peanut oil. Coconut oil can be used at any temperature in the oven
when mixed in foods.
WHAT IS THE NUTRIENT CONTENT OF COCONUT OIL? DOES IT
CONTAIN OMEGA-3 FATTY ACIDS
Coconut oil has about 117-120 calories per tablespoons, about the
same as other oils. It contains 57-60% medium chain triglycerides,
which are absorbed directly without the need for digestive enzymes.
Part of it is metabolized by the liver to ketones which can
be used by most cells in the body for energy. This portion of the
coconut oil is not stored as fat. Coconut oil is about 86% saturated
fat, most of which is the medium chain fats that are metabolized
differently than animal saturated fats. It contains no cholesterol
and no transfat as long as is non-hydrogenated. An advantage of a
saturated fat is that there is nowhere on the molecule for free radicals
or oxidants to attach. About 6% of the oil is monounsaturated
and 2% polyunsaturated. Coconut oil also contains a small amount
of phytosterols, which are one of the components of the “statins”
used for lowering cholesterol. Coconut oil contains omega-6 fatty
acids but no omega-3 fatty acid, so this must be taken in addition
to coconut oil. You can obtain all of the essential fatty acids required
by using just coconut oil and omega-3 fatty acids. If you
were to use coconut oil as your primary oil, the only other oil you
would need is an omega-3 fatty acid, which you can get by eating
salmon twice a week, or taking fish oil or flax oil capsules, 2-3 per
day. Some other good sources of omega-3 fatty acids are ground
flax meal, chia (a fine grain), walnut oil and walnuts. Lauric acid is a
medium chain triglyceride that makes up almost half of the coconut
oil. Scientific studies show that lauric acid has antimicrobial
properties and may inhibit growth of certain bacteria, fungus/
yeast, viruses and protozoa. It is one of the components of human
breast milk that prevents infection in a newborn.
WHAT KIND OF COCONUT OIL SHOULD I USE? Look for coconut
oils that are non-hydrogenated with no transfat. Avoid coconut oils
that are hydrogenated or super-heated because it changes the
chemical structure of the fats. If you like the odor of coconut, look
for products called “virgin,” “organic,” or “unrefined,” which are
generally more expensive than “refined,” or “all natural,” or
“RBD” (refined, bleached and deodorized) coconut oil, which do
not have an odor. The oil itself is tasteless. Any of these have essentially
the same nutrient with about 57-60% MCT oil (medium
chain triglycerides.) The least expensive that I have been able to
find so far is the Louanna brand at Walmart, priced locally at $5.44
per quart. Using coconut oil capsules is not an efficient way to give
the oil since the capsules are relatively expensive and contain only
1 gram of oil per capsule, whereas the oil is 14 grams per tablespoon.
Capsules might be useful for someone who will not take the
oil.
WHO SHOULD TRY THIS?
People who have a neurodegenerative disease that involves decreased
glucose uptake in neurons could benefit from taking higher
amounts of coconut and/or MCT oil to produce ketones which may
be used by brain cells as energy. These diseases include Alzheimer’s
and other dementias, Parkinson’s, ALS (Lou Gehrig’s),
multiple sclerosis, Duchenne muscular dystrophy, autism, Down’s
syndrome, and Huntington’s chorea. Ketones can also serve as an
alternative fuel for other cells in the body that are insulin resistant
or cannot transport glucose, and could potentially lessen the effects
of diabetes I or II on the brain and other organs. If you are at
risk due to family history, you consider making this dietary change
as well. If your loved one is in assisted living, the doctor may be
willing to prescribe coconut oil to be given at each meal, increasing
gradually.
HOW MUCH SHOULD I TAKE?
If you take too much oil too fast, you may experience indigestion,
cramping or diarrhea. To avoid these symptoms, take with food
and start with 1 teaspoon coconut oil or MCT oil per meal, increasing
slowly as tolerated over a week or longer. If diarrhea develops
drop back to the previous level. For most people, the goal would be
to increase gradually to 4-6 tablespoons a day, depending on the
size of the person, spread over 2-4 meals. Mixing MCT oil and coconut
oil could provide higher levels and a steady level of ketones.
One formula is to mix 16 ounces MCT oil plus 12 ounces coconut oil
in a quart jar and increase slowly as tolerated, starting with 1 teaspoon.
This mixture will stay liquid at room temperature.

Page 11
Helpful
Web Sites
Americans with Disabilities Act
www.usdoj.gov
The Joint Commissions on
the Accreditation Healthcare
Organizations
www.jointcommission.org
Paralyzed Veterans of
America
www.pva.org
Medicare
www.medicare.gov
National Association of
Area Agencies on Aging
www.n4a.org
U.S. House of Representatives
www.house.gov
U.S. Senate
www.senate.gov
Legislation Status
thomas.loc.gov
https://writerep.house.gov
e/writerep/welcome.shtlm
www.alssac.org
www.alsa.org
Debra’s Story
Debra’s Story—Karen Boozel Boone (Debra’s sister) is holding a Walk for a cure
in her honor in Reno/ Sparks at the Marina on September 18th. Debra wrote this piece
about her sister for us.
Being diagnosed 6 months ago with ALS was a huge blow to Debra TeCulver and
her family. Debra had been extremely persistent in the previous 20 months seeking a diagnosis
for her unexplained arm weakness and cramping. Many theories were eliminated,
many physicians consulted and diagnostic tests preformed. ALS diagnosis tends to
be more of elimination than anything else.
Life after diagnosis of ALS will never be the same for everyone affected by this
destructive disease.
Debra married her high school sweetheart, Jeff, on June 7, 1980 and they have
had the joy of successfully raising three fine children: Scott 30, Kelli 28, Taylor 18, and recently
welcomed their newest member, Megan 26, this summer when Scott and Megan
were wed.
Debra is a graduate of Clymer High School, Class of
1976, and until her diagnosis was employed by Maplevale
Farms, Clymer, NY as a customer service specialist.
Besides her family, Debra’s loves include camping, snowmobiling,
swimming, and sewing. She is an amazing seamstress
who has beautifully completed many prom and bridal
ensembles. Enjoying these activitites isn’t as easy as it used
to be, but her attitude has remained amazing and the family
is adapting. Jeff surprised Debra at Christmas time with a
snowmobile they could ride as a couple, since handling one
alone has become difficult. Debra has been teaching Kelli to
sew. The family has been attending an ALS support group.
They are making lemonade from lemons.
Walk for a Cure
and help us put an END to Lou
Gehrig’s Disease.
Sunday, September 18th, 2011
Sparks Marina Park • Reno
9 am—Registration • 11 am—Walk
Raffle • Entertainment

Page 12
Research: Dexpramipexole
Biogen Idec and Knopp Biosciences today announced enrollment
of the first patient in EMPOWER, a multi-national Phase III study
evaluating the efficacy, safety and pharmacokinetics of dexpramipexole
in patients with amyotrophic lateral sclerosis (ALS).
“ALS is a serious disorder that affects patients in the prime of life
and for which there is an urgent need for new and effective treatments,"
said Merit Cudkowicz, M.D., MSc, Director of the MDA
ALS Clinic at Massachusetts General Hospital and Principal Investigator
in the EMPOWER study. "In the past several years, there has
been an explosion of research in ALS that has helped us better
understand the disease and potentially paves the way for the discovery
and development of new treatments for ALS.”
“This is exciting news for the ALS community,” said ALS Association
Chief Scientist Lucie Bruijn, Ph.D. “We have confidence in
Biogen’s clinical trial processes and encourage candidateso enroll.”
EMPOWER is a Phase III, randomized, double-blind, placebocontrolled,
parallel-group, multicenter study that will assess the
safety and efficacy of dexpramipexole in people with familial or
sporadic ALS. Approximately 804 patients will be randomized in a
one-to-one ratio to receive either dexpramipexole 150 mg twice
daily or placebo and will be followed for a period of at least 12
months. Investigators also have the option to maintain treatment
with the current standard-of care in ALS for all patients enrolled in
the study. The primary objective will be assessed using a joint
ranking of functional outcomes adjusted for mortality on the ALS
Functional Rating Scale, Revised (ALSFRS-R), a validated rating
instrument used by physicians for monitoring the progression of
disability in patients with ALS.
“Biogen Idec is committed to working with the ALS community to
find new treatment options for this deadly disease and to improve
the lives of people with ALS,” said Alfred Sandrock, M.D., Ph.D.,
senior vice president of Development at Biogen Idec. “Based on
promising data from earlier clinical trials, we believe that dexpramipexole
has the potential to be a significant advance for people
suffering from ALS, and we will fully explore its potential as a
new treatment for this devastating disease.”
“Knopp Biosciences is very pleased to see dexpramipexole entering
Phase III development with the initiation of the EMPOWER
study,” said Michael Bozik, M.D., president and CEO of Knopp.
“The promise of dexpramipexole has brought together a motivated
multi-national network of investigators and study coordinators
committed to determining if dexpramipexole can fulfill its
potential as a treatment for patients with ALS.”
Dexpramipexole was well-tolerated in three Phase I studies in
healthy volunteers who received dexpramipexole in single doses
up to 300 mg or multiple doses of up to 150 mg twice daily forfour-and-a-half
days. Dexpramipexole was also well-tolerated in a
two-part Phase II study (CL201) that evaluated about 100 ALS patients
treated for up to nine months and in a subsequent Phase II
extension study (CL211) that has continued to follow ALS patients
for about two additional years. In the first part of CL201, dexpramipexole
at 150 mg twice daily showed a trend toward slowing
functional decline over a 12-week period compared to placebo.
Following re-randomization in the second part of CL201, dexpramipexole
at 150 mg twice daily again showed a trend toward
slowing functional decline and also showed a trend toward improving
survival compared to low dose over a six-month period. In
CL201, the joint ranking, which incorporates both function and
survival and which is the primary endpoint of the Phase III trial,
significantly favored dexpramipexole 150 mg twice daily compared
to 25 mg twice daily.
Biogen Idec has agreed with the U.S. Food and Drug Administration
(FDA) on a Special Protocol Assessment (SPA) for the design
of the Phase III clinical trial of dexpramipexole. Under an SPA, the
FDA evaluates a clinical trial protocol to assess whether it is adequate
to meet current scientific and regulatory requirements for a
potential application to market a new drug. The first patient
dosed in the EMPOWER study triggers a $10 million milestone
payment from Biogen Idec to Knopp.
About Dexpramipexole
Dexpramipexole is a novel, orally administered compound under
development for the treatment of ALS. It has shown neuroprotective
properties in multiple in vitro and in vivo studies and may
work by increasing the efficiency of mitochondria, the energy producing
portion of the body’s cells. Mitochondria in the motor neurons
undergo significant stress in ALS patients. In a Phase II study,
dexpramipexole achieved its primary objective evaluating safety
and tolerability and also showed a trend toward dose-related
slowing of functional decline and a trend toward extending survival
at the highest dose (150 mg twice daily). Dexpramipexole has
been granted Fast Track status by the FDA, which may result in an
expedited review, and has received orphan drug designation for
the treatment of ALS from both the FDA and the European Medicines
Agency.

Page 13
Research: Whole Exome Sequencing Identifies VCP Gene as a Cause of ALS
“Whole exome sequencing” is a revolutionary technology in gene
discovery, and ALS is one of the first neurologic diseases to which
this technique has been applied. “ALS is leading the field in this
regard,” said Bryan Traynor, M.D., of the National Institute of Aging,
in a webinar hosted by the ALS Association.
Dr. Traynor has made significant contributions to the field of ALS
research, and has been closely involved with The Association in
guiding ALS research funding and project development, noted ALS
Association Chief Scientist Lucie Bruijn, Ph.D., who hosted the webinar.
Over the next two years, Dr. Traynor hopes to perform whole
exome sequencing on blood samples from 400 families with familial
ALS. To become part of that exciting research study, see the end of
this article for contact information. Family Studies are the Key to
Rapid Gene Discovery
There are two strategies for finding genes that cause disease, Dr.
Traynor explained, called “cohort studies” and “family studies.” In a
cohort study, the genomes (that is, the entire genetic makeup) of
thousands of individuals are screened, to find small changes, called
variants, which are associated with the disease. Such a study, also
called a “genome-wide association study,” was originally hoped to
be a way of rapidly finding disease genes, but the task is proving
more difficult than once thought. As a result, said Dr. Traynor,
“Everybody is coming back to family studies.”
Family studies were the standard way of finding genes from the
beginning of the gene-hunting era. Family studies were used to find
the first ALS gene, SOD1, and the more recent ones TDP-43 and
FUS.
A family study begins with a family, some of whose members have
ALS and others who don’t. By comparing their DNA, it is possible to
find a small differences in their DNA that correlate with presence of
the disease. The problem with family studies, until quite recently,
was that they required extremely painstaking work, and were therefore,
quite slow. In addition, researchers needed samples from at
least five family members with the disease, a challenge in a rapidly
progressive disease like ALS.
All that has changed in the past year, with the development of a
revolutionary new way to do family studies, called “whole exome
sequencing.” This has been made possible by recent progress in
gene sequencing techniques combined with a vast increase in computing
power.
Most Mutations are in Exons
The genome is the entire DNA inheritance of a person. But only a
small fraction of the genome encodes proteins, and it is the code for
proteins—the genes—that hold the key to understanding ALS. Each
of our 30,000 genes is divided into segments, called exons, about 10
per gene.
“The vast majority of the mutations that cause human diseases lie
in the exons,” Dr. Traynor explained. “We know that’s where the
mutations are, and we now have the ability to sequence them.”
The entire set of exons in the genome, called the “exome,” can now
be sequenced extremely rapidly, and because the data retrieved is
so much more detailed, as few as two family members with ALS are
needed to perform each study. This makes it much more practical
to perform family studies and is setting the stage for rapid discovery
of new ALS genes.
In a typical study from a single family, Dr. Traynor said, “we find
about 100,000 variants per individual. So how do we whittle it
down to what we are looking for?”
If a particular sequence variant is present in an individual without
ALS, it is probably not responsible for the disease, so it can be excluded
as a cause of the disease. Conversely, any variant not shared
between the two family members with the disease can be excluded.
VCP is the Newest ALS Gene
Using this type of strategy, Dr. Traynor and colleagues recently announced
the discovery of a new ALS gene, called VCP (valosincontaining
protein). After finding the gene in the initial family, they
found it in four unrelated families with familial ALS.
Now that the gene has been discovered, Dr. Traynor and others are
trying to understand the protein’s function, and how mutations
cause ALS. One clue may be that six identical copies of the protein
link up, and that disease-causing mutations may prevent that linkage.
With the discovery of VCP, genes for about half of all cases of familial
ALS have been identified. “That underscores the rate at which
genomic technology is advancing, and the rate at which we can apply
that to understanding ALS.” Each new gene also becomes a
candidate for screening those with sporadic ALS, since some people
with no family history nonetheless may have a gene mutation as a
cause.
Dr. Traynor plans to sequence the exomes of 400 ALS families over
the next two years. “VCP is just the start. The next two years is
going to tell a marvelous story about familial ALS.”
To perform this large-scale sequencing, Dr. Traynor is seeking families
with a familial form of ALS to donate samples for sequencing. If
you are willing to donate a blood sample for this research project,
contact Dr. Traynor’s assistant, Cynthia Crews, by email at
ccrews@nia.nih.gov or by phone at 301-451-3826.
“The field of ALS research grew tremendously as a result of the discovery
of the first ALS gene, SOD1,” Dr. Bruijn said. Genes help us
build tools and models, to help us understand what is causing the
disease.”

Page 14
Go Hornets!
WE WON!
SACRAMENTO, Calif. - Sacramento State
was one of 33 winners in the NCAA Division I
“Pack the House” Challenge. “Pack the
House” is a national effort in which conferences
and institutions compete to build attendance.
NCAA Division I women’s basketball marketing
staffs selected a home game and designated
that date as a “Pack the House” game
with the goal of setting an attendance record.
One winner from each of the 32 conferences
and one from a group of independent
institutions were named. Selections were based on marketing plan creativity and attendance criteria. The NCAA will
award prizes and donate $500 to the nonprofit organization of each winning institution’s choice. Sacramento State has
chosen ALS - Greater Sacramento Chapter as its non-profit organization.
And pack the house, they did. More than half of the Division I membership – 178 institutions – participated in the effort
that attracted more than 554,000 fans.
Sacamento State hosted 537 fans at its women’s basketball game against Portland State on Jan. 29, 2010.
Events at Army, Baylor, Duke, Gonzaga, Louisville, Marist, Michigan State, Navy, Oregon and Pacific produced sell-out
crowds. Sixty-nine programs surpassed their single-game attendance highs from last year. Sacramento State was just
15 fans short of setting a new single game attendance record.
“We believe this initiative has served as a catalyst to increase attendance, create excitement and enhance exposure for
our women’s basketball programs,” said NCAA Vice President of Division I Women’s Basketball Sue Donohoe.
“Institution personnel committed a great deal of time, effort and resources to this program and the results were extremely
positive. This program provides great ‘best practices’ and examples of success for institutions that are seeking
to ‘grow’ women’s basketball and these success stories will continue to strengthen efforts in the future.”
The ideas to market the games were as diverse as the membership itself.
At Sacramento State, director of marking and promotions Adam C. Primas worked with ALS - Greater Sacramento
Chapter, the Green Army, Pepsi Kids Clinic, Ticket to College, cheer and dance groups and Mercy Ministries to support
the event.
“I would like to thank all the groups and staff members that we worked with to promote this event," Primas said.
"Bringing more energy to that game made it all worth it. I look forward to working with everyone again next year to
make our "Pack the House" game bigger and better than ever."
This is the second time in the last four years that Sacramento State has won the NCAA Division
I "Pack the House" Challenge for the Big Sky Conference.

Page 15
Tips on Using eBooks for People with ALS
Tips on Using eBooks for People with ALS
by Betts Peters CCC-S , Assistive Technology Service Coordinator, The ALS Association OR & SW WA Chapter
Many people with ALS experience changes in their hands and arms that can make it difficult to hold a book or turn pages. However,
that doesn’t mean that you can’t still enjoy a great book. Electronic books, or eBooks, are now widely available on any subject,
and you may be able to read them on a device you already own. Read on for tips on how to access this great technology.
Hand-held readers such as the Amazon Kindle, Barnes & Noble Nook, and Sony Reader let you read a book without having to turn
the pages or hold the cover open. These devices are designed with a paper-like display that looks more like a book page than a
computer screen, without backlighting or glare. Buttons on the sides of the device allow you to turn the page. Fonts can be
enlarged for easier reading. A hand-held reader can hold hundreds of eBooks, eMagazines, and eNewspapers. Some models also
function as mp3 players, allowing you to listen to audio books or music.
Hand-held readers vary widely in features, price, and supported eBook formats. Some may be easier to use than others due to
button placement or sensitivity. If possible, do an in-store trial before purchasing a reader to make sure that it will work for you.
Some portable devices, including the iPhone, iPod Touch, iPad, and BlackBerry, can also display eBooks. Many of the available applications
(apps) allow you to turn pages simply by tapping the side of the screen, which can take less pressure than the pageturning
buttons on a handheld eBook Reader. Most will allow you to resize fonts or change screen colors for easier reading.
There are several reader apps available for these devices, all free of charge:
Amazon Kindle: for iPhone, iPad, iPod Touch, or BlackBerry
B&N eReader: for iPhone, iPad, iPod Touch, or BlackBerry
iBooks: for iPhone, iPad or iPod Touch
Stanza: for iPhone, iPad or iPod Touch
eReader Pro: for iPhone, iPad or iPod Touch
Mobipocket eBook Reader: for BlackBerry
You can also read eBooks on your laptop or desktop computer by using an on-screen reader. Pages can be turned using a mouse or
keyboard shortcuts. For those who are unable to use a mouse or keyboard, the computer may be adapted with a head mouse or a
switch that can be activated with another body part.
There are several readers available for free download:
Amazon Kindle for PC: www.amazon.com/gp/kindle/pc
Barnes & Noble eReader: www.barnesandnoble.com/ebooks/download-reader.asp
Adobe Digital Editions: www.adobe.com/products/digitaleditions/
Microsoft Reader: www.microsoft.com/reader/
Any communication device that has been unlocked (opened for internet, email, and access to Windows) can use the on-screen
eBook readers described above. DynaVox communication devices have a pre-installed eBook reader set up for access to a Bookshare
account (see below for information about Bookshare).
Most eBook readers allow you to access a store where you can purchase eBooks. The Kindle or its on-screen versions will link you
to Amazon.com, the Nook and B&N eReader will link you to BarnesandNoble.com, etc. Most stores that sell eBooks will offer many
titles at no charge. If you purchase eBooks from a site other than the one recommended by your reader, make sure to check
whether the format of the eBook is compatible with your reader. There are a variety of different eBook formats, and some readers
can only work with certain formats.
Bookshare.org is an online library of digital books available to people with disabilities who are unable to read physical books. For a
$25 one-time setup fee and a $50 yearly membership fee, members get unlimited access to the electronic books, textbooks, newspapers
and magazines in the Bookshare library. These books can be read using an on-screen eBook reader (or DynaVox software),
or can be spoken aloud in a computer-generated voice.
For more information and to apply for membership, visit www.bookshare.org. In order to qualify for membership, you must have a
Bookshare Proof of Disability form completed by your doctor or physical therapist.

Thank you to our March Donors! You make our programs and services possible.
Brent Anderson
Karen Boone
Mark Boozel
Virginia Boozel
CA Correctional Peace Officers Assoc
California Pizza Kitchen
Pamela Circo
Barbara Freeman
Ann Graef
Linda Hays
Stephen Knox
Maria Konoff
Herb Larsen
Ljubica Club
Judith Nelson
Norma Nicholson
Lindsey Reyna
Carole Rose
Cindy Schlenz
Joseph Schoennauer
Lindsey Sherrin
James Sprecher
Mary Thompson
Teresa Thurston
Company Vidal Electric LLC
David Whipple
Thomas Wiler
Thank you to our equipment donors!
Ann Graef
Carol Poncia
Linda Hays
Maureen Gill
In Memoriam:
We extend our deepest sympathy and support
to those families and friends who have recently
lost their loved ones to ALS in our community.
♥ H e r l i n d o S a l a z a r
♥ M a r i o G u i l l e n
♥ C h a r l o t t e W e b s t e r
♥ V i r g i l C h i l d r e s s
♥ B i l l H o l t z
♥ T o m C a l i a
♥ M a r y T o g n a z z i n i
♥ K e n P e r e z
My special friends,
A Special Note from a CALS
It is early and the sun is just now coming up, but before the day begins I wanted to focus on sending
you a note. On Friday, April 1 my wonderful husband Bill went home to be with his Lord. Dr. Oskarsson
I remember the day we sat with you and Bill said "This isn't going to get me". In your wisdom and
knowledge and with compassion you said nothing and I knew then what you knew. Bill fought a good
fight with never a word about poor me, why me. He fought with courage and kindness. I not only
loved him dearly, but knew that even though this was hard work for Chris and I it was even harder for
Bill to lose himself little by little by little and yet know in his brilliant mind what was happening. Nancy
to all of the people on the staff of the Sacramento ALS Association my words are not enough to tell
you how you carried this family through the past 28 months. You were never more than a phone call
away. Your love and generosity helped us get Bill out of the house to be able to attend the basketball
tournament in his honor at William Jessup University last fall. Without your financial assistance we
never would have been able to rent the van that carried him to that tournament that honored him and
touched his heart.
Bill's greatest love in life was God, followed by Chris and I, but he loved people so much and it is my
hope that in meeting him you felt some of that love however brief your time with him was.
With my heartfelt thanks for all you mean to this family, Teresa Holtz