The ALS Association, Greater Sacramento Chapter November 2012 ...

NOVEMBER 2012
Dear Friend,
The ALS Association again salutes those special people who serve as
family caregivers during National Family Caregivers Month. The theme
for this year’s campaign is “Family Caregivers Matter!” And indeed
they do as they put forth much time, energy and effort to care for
spouses, children, parents and other loved ones who require daily assistance
in living with Lou Gehrig’s Disease.
On November 11, The Association also pays respect to the armed
forces on Veterans Day. In honor of these men and women who have valiantly fought for our
country and have also waged or are waging a tremendous battle against ALS, we are celebrating
their strength and courage on the Wall of Honor. Nearly 200 service members are included on this
wall, which features veterans from every era, ranging from before World War II to the conflicts in
Afghanistan and Iraq.
Please help The Association honor these individuals this month and throughout the rest of the
year. If you know someone living with ALS who has served in the military, please ask them to submit
their information to the Wall of Honor. Also, remember to send a note of encouragement and
thanks via an e-card to show your support to that special family caregiver.
Sincerely,
Amy Sugimoto, Executive Director, The ALS Association
Greater Sacramento Chapter
Walk to Defeat ALS Update: Ever since Walk day, we’ve been tallying
up all of money that you worked so hard to raise. We know you’re excited
to hear the total. Drum roll please…. $206,204.49! Reaching this milestone
is an incredible success; however, we’re still $18,795.51 short of our overall
goal.
2012 Goal: $225,000
Raised to date:
$206,204.00
This might seem like a lot of money, but if we all work together and each do our own part, we can
easily achieve our goal. It’s not too late to make a difference!
We hope you’ll consider making a personal donation to do your part in the fight to end this devastating
disease. Meeting this fundraising goal is vital for our chapter as we strive to continue serving
families with ALS and funding cutting-edge research to provide them with hope for the future.
The walk may have ended, but the fight against ALS has not. Keep fighting with us, and help us
reach the $225,000.00 mark!
The ALS Association, Greater Sacramento Chapter
November 2012 Newsletter
Patients • Caregivers • Families • Donors
Proudly serving 24 counties in Northern California
from the Sierras to the Oregon Border
1

Support Group Meetings and Special Events
Upcoming Support Group Meetings in Northern CA.
SACRAMENTO (Dow ntown)
Sutter Cancer Center
STOCKTON (New Location)
Call 916-979-9265 for details.
December 6th, 2012
10:30 am—12:30 pm
PALS & CALS
Light Refreshments served
(Combined Session)
In this issue:
2800 L St reet
Sacramento, CA 95816
Holiday Celebr ation
Saturday, November 17th
10:30-12:30
SACRAMENTO (Fulton Ave)
Carlton Plaza
1071 Fulton Avenue
Sacramento, CA 95825
December 8th, 2012
Noon—2 pm
PALS & CALS
Support Group Meetings____________2
PALS Lauren Spencer’s Story_________3
New Research____________________4
Veterans Day Campaign____________5
Resource________________________6,7
Ask the Doc_____________________.8,9
Attitude of Gratitude_____________12
Thank you’s_____________________13-16
CHICO (New Location)
NO SUPPORT GRO UP FOR
NOVEMBER AND DECE MBER
Please call office for more
information.
PALS & CALS
Holiday Celebration!
Please Join us on
Saturday, November 17th
as we celebrate the
holiday’s.
Sutter Cancer Center
2800 L Street
Sacramento, CA.
Time: 10:30-Noon
This is a celebration of
love, giving, holidays and
cheer. Festivities include
breakfast and our
traditional white elephant
gift exchange.
RSVP to Nancy @
nwakefield@alssac.org
Or call 916-979-9265
UPCOMING EVENTS:
Second
Saturday
Art Walk
Saturday, November 10,
2012
West Sacramento
Community Center
Art, Wine, Live Music
5-10 pm
Free admission, donations
welcome
5th Annual
Run for a
Cure
Roseville, Sculpture Park
Saturday, January 5, 2013
Information 916-979-9265
Friday, June 21, 2013
Elks Tower
Grand Ballroom
6-11 pm
Silent & Live Auction
Dinner
Dancing
2

A Letter From Our PALS – Lauren Spencer’s Story!
My name is Lauren Spencer. I was diagnosed with ALS in 2000 at the age of 14, one of the youngest
ALS patients registered at the Sacramento Chapter office at that time. I’m currently 25 years old. I was
raised in Stockton and I’m a 2005 graduate of Lincoln High School. I currently live in Los Angeles and recently
graduated from Cal State Northridge with my BA degree in TV production. I have been working at a
temporary job transcribing footage for reality shows and doing several freelance video editing projects.
Staying busy and staying focused on my dreams and building a solid career in the entertainment industry is
what I work towards every day.
There is no history of ALS in my family; I’m the only person
to have it thus far. My close family has helped me through
this journey by being supportive and by not treating me any
differently. They don’t “baby” me, but are always there when I
need them. They continue to love and support me just like they
would if I didn’t have ALS.
I definitely have days that I become emotional and
think, “why me” But I try to stay positive by reflecting and focusing
on everything I have achieved. I have my own apartment
in Los Angeles and I have an amazing support system full of
family and friends. I work every day doing what I love to do and
that makes me happy and keeps me positive. I always try to
focus on what brings me joy, despite my fears that I won’t be
accepted or worrying about things I can’t do because of my disease.
I enjoy going to the movies, watching music videos
(because that’s the type of work I do!), hanging out with
friends, going on road trips and doing things that make me
Lauren Spencer
laugh and smile. My proudest accomplishment has been moving
to L.A. and actually staying there to graduate from Northridge. In more general terms, living and making
it through each day is my ultimate proudest accomplishment!
To the readers of this newsletter and to those newly diagnosed with ALS, the true treatment for this
disease is faith and love. Have faith that every day will be greater than the next because what the world has
to offer is bigger than this disease. Have faith that life hasn’t stopped just because you are diagnosed; the
only thing that can stop you from living is you, not ALS. So don’t dwell on what the doctors may tell you and
don’t let Internet “facts” scare you or make you lose your faith because when it is your time to meet God in
Heaven, it is up to Him, so enjoy it while He has you here. Fill each day with people who love and support
you. Do whatever you want in life no matter what it may be. Everything happens for a reason, all you have
to do is explore those reasons because there is a reason you are still alive today. I cannot stress enough how
important and necessary it is to stay positive and seek things that bring joy and peace into your life.
Thanks to the Sacramento Chapter for the emotional support and making me feel that I always have
a home, even though I live in Los Angeles. Blessings to all!
Writer’s Note: Lauren’s story and young diagnosis of ALS was featured on KCRA- Channel 3 TV and the station
also aired footage from her high school graduation in 2005. In addition, she was the guest speaker at
two fundraising events held by the ALS Greater Sacramento Chapter. She did an awesome job, her smile and
positive attitude inspired everyone who attended!
3

Recent Research
Updates on Two Clinical Trials: NP001 Phase III
and Tirasemtiv Phase IIb
On October 30, Neuraltus Pharmaceuticals announced
that it is planning a Phase III clinical program
to continue to study of its drug, NP001, in
people with ALS. According to the company, its
Phase II clinical study demonstrated positive
trends in slowing the rate of disease progression,
and NP001 was found to be safe and welltolerated.
The data will be presented at the 23rd
International Symposium on ALS/MND in Chicago
this December.
On October 29, Cytokinetics, Incorporated, announced a Phase IIb clinical trial to continue studying it
drug, tirasemtiv, formerly known as CK-2017357, in people with ALS. It has opened BENEFIT-ALS (Blinded
Evaluation of Neuromusclar Effects and Functional Improvement with Tirasemtiv in ALS), formerly known
as CY 4026, to enrollment.Click here to read the full article.
ALS Association-funded Study Identifies Potential Therapeutic Target in RNA Enzyme
A new study funded in part by The ALS Association has revealed a potential new target for therapy to
treat amyotrophic lateral sclerosis (ALS) or Lou Gehrig’s Disease. This study, published in Nature Genetics
on October 28, shows that lowering the level of a cellular enzyme reduces the disease-causing activity of
a major ALS-related protein called TDP-43.
Most people with ALS develop clumps of excess TDP-43 protein within their motor neurons, nerve cells
that control movement. The protein clumps, or aggregates, are believed to be toxic to the neurons,
through unknown mechanisms. ALS occurs when motor neurons die.Click here to read the full article.
ALS Researchers Honored by Institute of Medicine
The ALS Association congratulates Don Cleveland, Ph.D., and Tom Maniatis, Ph.D., on their recent election
to the Institute of Medicine (IOM). Election to the IOM is in recognition of outstanding professional
achievement and commitment to service and is one of the highest honors in the fields of medical science.
“The recognition of these two scientists by the Institute of Medicine highlights the importance of their
research in neurodegenerative disease in general, and ALS in particular. We are grateful that these distinguished
researchers have chosen this field as the focus of their efforts,” said ALS Association Chief Scientist,
Lucie Bruijn, Ph.D.Click here to read the full article.
C9orf72 Symposium Highlights New Ideas in Understanding and Treating ALS and FTD
The discovery of the C9orf72 gene is perhaps the most exciting discovery in ALS in the last 20 years, according
to researchers hard at work to understand how the gene causes ALS and a related disorder, frontotemporal
dementia (FTD). To maximize the growing understanding of the gene among the widest possible
group of scientists, The ALS Association partnered with The Association for FTD to sponsor a symposium
in New Orleans at the annual meeting of the Society for Neuroscience, the world’s largest assembly
of neuroscientists.
“It is an exciting time for ALS and FTD research, and there are many new questions that are now going to
emerge as we begin to explore this gene,” said ALS Association Chief Scientist Lucie Bruijn, Ph.D. That
excitement was shared by the 170 investigators attending the symposium, many of whom are just joining
the field, including established academic investigators, post-doctoral fellows, representatives from industry
and clinicians.Click here to read the full article.
4

2012 Veterans Day
2012 Veterans Day
Awareness Campaign
Veterans Day is November 11 and The ALS Association
once again is launching a national campaign to raise public
awareness of our military heroes fighting ALS and those
who have been lost to the disease. During this campaign,
we will deliver key messages about the connection between
ALS and military service -- messages that draw attention
to this disease and which can generate support for
our cause.
An overview of the campaign is provided below. However,
we encourage you to participate in the campaign in as
many ways as you can, including by uploading veterans' stories and photos to the "Wall of Honor" and by
sending a letter-to-the-editor of your local newspaper or simply forwarding our updates, alerts, and social
media posts to friends, family and colleagues. Your efforts can make a difference not only for our veterans,
but for everyone whose life has been touched by ALS.
Key Activities: Wall of Honor: Go to our website and visit the "Wall of Honor." This visual tribute recognizes
our military heroes with ALS as well as those veterans we already have lost to the disease. The Wall includes
scrolling photographs of veterans from across the country to help put a face on the disease and its impact
on veterans. The Wall is searchable by state and branch of service, and veterans and family members can
upload photos to the Wall and share their ALS story. Uploading a photo and story is easy. Simply click the
link, Share Your Story, which can be found on the Wall, and follow the instructions on the website. If you are
a veteran or know a veteran with ALS, we encourage you to spread the word and to join the Wall today! We
also encourage family members or friends to share the photos and stories of veterans with ALS who have
been lost to the disease.
Video: Videos featured on our website highlight the connection between ALS and military service and also
provide information about the services available to veterans, their families and survivors, including vital
benefits available from the VA.
Letters-to-the-Editor: The Association once again will make available sample letters-to-the-editor prior to
Veterans Day that individuals can easily send to their local newspapers via the Advocacy Action Center of
The ALS Association's website.
We encourage you to participate in this campaign and spread the word. By doing so, you not only raise
awareness and support for our military heroes, but for all people living with ALS and their families.
This November consider making a donation to The ALS Association, Greater Sacramento
Chapter in honor of a special caregiver or Veteran. Visit www.alssac.org to
make a gift today.
5

Helpful Resources
Guide to the 2013 Medicare Rx Drug Benefit Open Enrollment
The ALS Association encourages people with ALS who are enrolled in Medicare
to take advantage of the annual Open Enrollment period to make sure
they have the best coverage available to meet their prescription drug and
health care needs in 2013. The open enrollment period takes place October
15 to December 7, 2012.
During the open enrollment period, those currently enrolled in a Medicare prescription
drug plan have an opportunity to switch plans, or they can remain in
their current plan. Those who did not enroll in the benefit when they first became
eligible for Medicare also may enroll at this time, although these individuals may be subject to a late
enrollment penalty.
Click here to read the full article and to download the guide.
OTHER RESOURCES
HICAP (1-800-434-0222). This is a state sponsored FREE health insurance counseling program.
They counsel on Part D and Medical Insurance Plans and issues.
PARTNERS FOR PRESCRIPTION SERVICE can connect you to many pharmaceutical companies that
do discounted drugs for those in need.(1-888-477-2669), www.PPARx.org
EXTRA FINANCIAL HELP information is available for Medicare Part B and Part D Premiums, Drug
co-pays, and Supplemental Social Security Benefits (SSI). Call (1-800-772-1213 or 1-866-633-4277).
If you qualify they will start the process.
Planet Drugs Direct. This is a Canadian pharmacy which might be a lower cost resource for some
brand name drugs and drugs not available on a drug plan. (1-888-791-3794)
www.planetdrugsdirect.com
Greater Sacramento Specialty Pharmacy. This is a nonprofit association that carries specialty drugs
not available at local pharmacies and often at a low cost. (1-888-792-3888)
Self Help: If you want to compare drug plans yourself, or have a family member or friend assist you,
go on line to www.medicare.gov, or call Medicare (1-800-633-4227) or try: www.Q1Medicare.com
or www.mypartdusa.com You can refer to the “Medicare And You” Handbook for 13.
Durable Medical Equipment: If you need loaner durable medical equipment contact The ALS Association,
Greater Sacramento Chapter at 916-979-9265.
Multi-Disciplinary Care Clinic: To schedule an appointment at one of our Multi-Disclipinary Clinics,
please contact Nancy Wakefield or Nancy Ferguson at 916-979-9265.
Nutritional Support: Do you have a feeding tube and need supplements Please call the Chapter
office at 916-979-9265 and we’ll make sure you get your nutrients.
6

Information & Resources for Patients
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 or call Kevin Patton at (916)
364-6791
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, http://thomas.loc.gov/home/thomas.php
California Department of Veterans Affairs (CDVA), Tele: 800-952-5626 (toll free) Web: www.cdva.ca.gov
Reno VA Medical Center, SCI Telehealth Clinic Tele: 775-786-7200< ext. 1378
VA Northern California, Julie Moua, MSW, SCI/D Coordinator Tele: 916-843-9130
Social Security Administration, Tele:800-772-1213 (toll free) Web:www.ssa.gov
Free App for the IPAD, Developed by an ALS Patient. For more information please visit:
www.verballyapp.com
Forbes Norris Clinic, Appointment Line: 415-600-3604
UCD Clinic Appointment Line: (916) 734-4795
The ALS Association, Greater Sacramento Chapter (916) 979-9265
Congressment Dan Lungren, http://lungren.house.gov/contact-us
Congressmen Jerry McNerney, http://mcnerney.house.gov/
Congresswoman Doris Matsui, http://www.matsui.house.gov/
Upcoming Webinars
Communication Between Caregivers and Those Diagnosed With ALS
The webinar will address how to avoid communication breakdowns, what to do when they happen,
and psycho-social issues related to communication.
November 19, 2012 (Monday) at 11:00 a.m. PT (2:00 p.m. ET)
Speaker: Alisa Brownlee, ATP, The ALS Association Greater Philadelphia Chapter
Call-in toll-free number (US/Canada):1-877-668-4490
The Role of the Immune System in ALS
“The Role of the Immune System in ALS”
Tuesday, November 13, 2012 at 4 p.m. ET/3 p.m. CT/1 p.m. PT
Speaker: Dr. Howard Weiner
Harvard Brigham and Women's Hospital at Harvard Medical School
Harvard Medical SchoolClick here to attend this webinar.
7

How you can help
Honor a Loved One in the Fight Against ALS
Lou Gehrig’s Disease can change a person’s life in a profound way. It’s up to us to
inspire others to join the fight against this unforgiving disease by sharing our own
personal stories.
You can be source of strength and support for the ALS community by creating a
Community of Hope Tribute Fund today. The ALS Community of Hope is made up of
people diagnosed with the disease, families who guide their loved ones through the
effects, children who face the loss of their parents, caregivers who dedicate themselves
to easing pain and neighbors who volunteer to help however they can.
Create a Community of Hope Tribute Fund today to bring together friends to share stories, provide updates,
listen, give encouragement, pay tribute and raise awareness of ALS. Your Tribute Fund has the potential to
bring together spouses, friends, children and neighbors in the battle against ALS. And give HOPE to the honoree
and their family. Together we can let people with ALS know they are not facing this disease alone. They
are part of a greater community, a Community of Hope.
Retiring with Meaning - Helping Your Kids & Fighting ALS
Odds are high that some or all of your assets are in one or more Individual Retirement Accounts (IRAs) you
own. What’s often overlooked in estate planning is that assets in an IRA pass outside your will. Instead, the
distribution is governed by the beneficiary designation form you completed when you set up the account.
Here are some important points to keep in mind when thinking about how you would like your IRA assets
distributed after your death:
1. Because charities, like The ALS Association, can receive IRA assets tax-free, every penny of your hardearned
and saved IRA dollars go to find a cure for this devastating disease. Without proper planning, retirement
assets may be subject to both estate and income taxes at your death. By donating your IRA, you will
receive an estate tax charitable deduction and you can designate less heavily taxed assets to your heirs.
2. If you have not reviewed your beneficiary designation forms for some time it’s a good idea to check
them. Be sure you check not only the forms you have on file but also the forms that are on file at the financial
company. Most brokerage and mutual fund firms make it easy for you to change beneficiaries. They can
send you a form through the mail and often forms can often be found on their website.
3. Remember that it is not necessary to designate 100% of your IRA assets to a single beneficiary. Even a 5%
designation to our Chapter can make a significant difference in our ability to provide compassionate care
for people living with ALS. For more information or for assistance in making a legacy gift of IRA assets, please
contact our Chapter office.
The California Tax Check-Off Campaign has successfully raised
$124K for The ALS/Lou Gehrig’s Disease Research Fund since January
of 2012. 100% of these funds (less the states 10% administrative
fees go directly to finding an effective treatment for ALS.
In 2013 we will again launch the “Get the 414 on ALS” campaign. We
must raise $250K by June of 2013 in order to maintain our voluntary
contribution status on subsequent year’s California tax forms.
Help us spread the word to friends, family, colleagues, and most importantly
your CPA or tax preparer. Ask them to help us find a cure
for Lou Gehrig’s Disease and spread the word about the opportunity
to give on line 414 in California!
8

Ask the Doc: Q & A with Edward Kasarskis, MD, PhD
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: What is the best way to support your loved one at an ALS Association Clinic appointment
A: This is an important question because the role of the caregiver, usually a spouse, is perhaps
the single most important factor in effectively dealing with ALS.
Dr. Kasarskis
In our clinic, we frequently comment among ourselves that we do not really understand how a caregiver physically
can do this day in and day out. While most physicians and other health professionals have never actually experienced
giving daily direct care to an ALS patient ourselves, here are a few thoughts "from the outside looking in."
Caregiving can be overwhelming and exhausting, meeting the physical and emotional needs of someone you love
while also managing the details and stresses of running a household, and possibly fulfilling the role of a parent of a
school age child in addition. So, how do they do this
Preparation. Before you come to the clinic, be prepared. Bring a list of all the medications your spouse, partner, parent,
or family member is taking, with the specific doses and other details. Better yet, bring all your medicines in a
zip-lock bag. Also be sure to write down a list of all your questions large and small so you’ll really remember to ask
them. It’s just like keeping a running grocery list at home so you don't forget anything important when you go to the
store. Having the list really helps.
Communication. In addition to the questions you bring with you, be sure to ask about anything you don’t understand
as you talk with the ALS neurologist, respiratory therapist, physical therapist, nutritionist, occupational therapist,
and nurse. If you don’t understand something or if you are unsure how to execute something they’re suggesting,
get more information or even ask for a demonstration. This may be particularly true in the case of PT and OT
recommendations.
Take a notepad and take notes so you can review them later when you have more time. Bring your iPad to watch a
video demonstration about transfer techniques. Some suggestions will sound easy enough at the clinic but when you
get home, you may find you have more questions. Much of the journey with ALS is on-the-job training. You keep
learning new things as the situation changes. Sometimes when you’re in the clinic you’ll find you’ll be working with
the ALS team to solve a problem that is specific to you. The most successful caregivers and patients work together
with the ALS team to actively problem solve, communicating what they think is the best approach given their circumstances,
and what they do and do not understand.
Confidence in going forward. The Clinic Team will outline a general roadmap for the future, indicating the next likely
challenge and alerting you to the potential solutions. For example, this might be something like, "On the next visit
we will be discussing and probably recommending a gastrostomy tube for nutritional support." Sometimes that may
be psychologically difficult to hear. Who wants to face a problem before they have to But knowing you’re ready for
what may happen next perhaps having a walker ready, or understanding what communication devices will be available
to you should you need them helps reduce the innate resistance to change and problems, and ensure you will
have what you need when you need it.
Confidence in going forward also comes from taking care of yourself physically and emotionally. I know, that’s easier
said than done when you’ve got so much on your shoulders. Remember that your health and wellbeing are critical to
the health and wellbeing of your loved one. If you get run-down, you risk personal injury and illness while you are
helping your family member with ALS.
So if you can, get help from someone to assist you in running your day-to-day activities and managing the chores,
errands, and hassles of everyday life. Try to minimize fatigue by building in breaks and doing things just for yourself:
taking a walk or seeing friends at the corner coffee shop. Having some personal time is priceless and important.
Make sure you can regularly have a little respite from your virtual non-stop responsibilities.
9

Save the Date
January 5, 2013
5 th Annual
Lou Gehrig Roseville
5K/10K
Run/Walk for a Cure
“Make your New Year’s Resolution to Strike-Out ALS”
Distance:
Half-Mile Kid’s Free Fun Run – 8:30 am
5K/10K Run/Walk – 9:00 am
Location:
Sculpture Park – I-80 and Eureka Road
24 Hour Parking Lot – 336 North Sunrise Blvd. Roseville
Age Divisions:
12 and under, 13-15 years, 16-19 years, 20-29 years
30-39 years, 40-49 years, 50-59 years, 60-69 years, 70+
Awards:
Overall Female/ Male and Top Two Division Winners
All Kid’s Fun Run Participants receive ribbons
Registration Fees:
$30 Pre-registration
$35 Same Day Registration – 7:00 to 8:30 am
Kid’s Fun Run – Free
**Online Registration will open soon at www.alssac.org
For more information on this event, including sponsorship or volunteer opportunities, please
contact Wendy Ehlen at 916-300-3758. All proceeds from this event will benefit The ALS Association,
Greater Sacramento Chapter.
10

Patient Interview: Cathy Speck on Karina Dreyer
Here we are again, in the month traditionally known for showing
our thanks—November. Since the name of my column is "Attitude of
Gratitude," you might think I'm filled with gratitude. Well, you are right
on! Yes indeedy! I am so thankful for all the wonderful people of our
ALSSAC community. I often wonder how our incredible staff can stay so
positive and energetic.
Cathy Speck
Cathy and Karina at the 2012 Walk
to Defeat ALS
We PALS have a unique understanding of each other, especially
during the "break-out sessions." The power of Truth in our support
groups is something I am thankful for. And I'm also giddy about making
new friends there. Karina Dreyer, who comes off and on to our Saturday
groups in Sacramento actual has PLS, not ALS. The first time I saw her at
a meeting, I don't think she spoke other than to say her name. The following
month during a break-out session she did speak and I was intrigued
by her accent. I asked her where she was from—which country. She kindly answered "South Africa." I
boldly told her that I thought her accent had some German in it, and she still kindly explained that her grandmother
was German. As a youngster, Karina grew up speaking German as well as Afrikaans, the first language
of South Africa.
My last name, Speck, is a German word that means "bacon," and even though I'm a vegetarian, I studied
German for nine years, starting in 7th grade. Karina and I quickly (no time to waste) became Germanspeaking
friends, and we talked about our cognitive struggles. Cognitive effects of ALS/PLS are not well -
defined, and the changes can be side-effects of medication, lack of restorative sleep, hormones and age, etc...
Here is part one of Karina’s story.
I grew up in Pretoria South Africa. I studied computer science at the University of Pretoria. In 1989 I
married Dirk Dreyer, and we had two sons—Wiekus was born in 1993, and Christo in 1994.
Dirk studied computer science at the University of Johannesburg and in 1996 we were given the opportunity
to come to America to work as programmers. We were consultants in Richmond, Virginia, and after
that in Denver, Colorado. And then we got green cards, so we could stay and work. And this is how we came to
California. We bought a house in Roseville, Ca. We became US citizens in 2004.
In 2011 I started having problems with spasticity and walking, after a seeing a lot of doctors, I was diagnosed
with PLS Primary Lateral Sclerosis by the doctors at UCSF.
PLS is caused primarily by degeneration of the upper motor neurons in the brain and spinal cord, which
results in increasing spasticity and weakness of voluntary muscles. It is often referred to as a benign variant of
Amyotrophic Lateral Sclerosis (ALS, Lou Gehrig’s disease). The primary difference between the two is that in
PLS the spinal motor neurons or lower motor neurons stay intact. Thus, there is no muscle wasting
(amyotrophy), which is the symptom that ultimately causes fatal complications in ALS.
However, there are some slowly progressing forms of ALS that are difficult to distinguish from PLS. In
fact, up to 10% of ALS patients survive more than ten years. In addition, improved medical care is resulting in
longer and more productive lives for all ALS patients. For additional information on ALS, see the ALS Fact Sheet
by the National Institute of Neurological Disorders and Stroke.
No treatments are currently available to prevent, stop, or reverse PLS. Treatment is focused on symptom
relief, such as medication to reduce spasticity; physical therapy and exercise to help maintain flexibility,
strength, and range of motion; assistive devices and communications aids; and supportive therapy and other
modalities.
For more information on Spastic Paraplegia visit: http://sp-foundation.org/understanding-hsp-pls/pls/
#Different
12

Our Donors. Making a Difference.
Carlina Abiles
Ace Hardware, Davis
Rebecca Adams
Inge Adolph
Diana Aedrich
Janet Aiko Keintz
Patsy Alexander
Adam Alexander
Terri Allegrini
Allison Allen
Carolann Allen
Janine Allen
Jana Allen
Mary Jo Allred
Janice Amant
Vincent Anaclerio
Cheryl Anderson
Jeanne Anderson
Mary Anderson
Jessie Andrade
Frank Aochi
Quintell Apacanis
Daniel Arbios
Tina Archer
Lucero Arellano
Linda Arias
Elizabeth Arizanga
Charles Arnold
Ron Arrants
Janee Artero
Rhonda Ashoff
Andrew Atkinson
Tiffany Atkinson
Evelyn Atwater
Ashley Atwood
Euleda Auernig
Marvin & Helen
Augustine
Lynne Austin
Ivania Avilez
Rich & Elanor Avilla
Joan Axelson
Susan Aydelotte
Alan B.
Katrina B.
Angela Bailey
Linda & Burton Baker
Kevin Balinski
Theresa Balk
Steph Ballejo
Louis Ballesteros
Joyce Baral
Vicki Barber
Anna Bardy
Wanda & Erica Bardy
Don & Suzanne Barella
Mary Beth Barker
Steve Barker
Jennifer Bartley
Kathleen Barzegar
Stephanie Basile
Sheila Baumbach
Frances Baxter-Guigli
Julie Beal
Jeff And Sherry Beasley
Bruce Bell
Erik Bell
Jennifer Bell
Joe Belli
Sue Belli
George Beltrametti
Ingrid Beltz
Stephen Bender
American River Benefit
Administration
Kari Benton
Gloria & Harold Benzel
Tom Bergmann
Julio Bermejo
Cynthia Berndt
Michael And Johanna
Berrigan
Bonnie Berry
Brigitte Berry
Ryan Bertrand
Clarice Beynon
Jeanie Bigley
Robert Bishofberger
Vivian Blair
Donald "Monte" Blair
Cynthia Blanchard
Terry Bochaton
Craig & Lillian Bock
Caroline Bolduc
Collin And Kelly Boles
Pedro Bonilla
Paul Boroski
Victoria Botelho
Amanda Bourgeois
Casey Bowden
Jake Bowden
Mckenna Bower
Brent Bowers
Teresa Bowman
Vance Boyles
Lily Bradley
Deborah Bradshaw
Justin Bradshaw
Florence Brazill
Kathleen Breining-Klug
David Brierly
Barbara Brink
Janet Brizendine
Cindy Brock
Erin Brooks
Mellor Brothers
Amber Brown
Gregory And Judith Brown
Mary Sythel Brown
P. Loretta Brown
Chris Brunner
Donna Burke
Karen And Brad Burmeister
Business Credit Card
Systems, Inc
Kathy Butler
Marguerite Butler
Christina Byrnes
John Caito
David Calderon
Gricel Calderon
Mario Callegari
Jane Callegari
Kurt Callies
Kathy Campbell
Matt Campbell
Christina Candelaria
Novelyn Candland
Karen Cannata
13

October Donations. Making a Difference.
Sarah Carlson
Bill And Sue Carlson
Katherine And Erik
Carlson
Nancy Carney
Adrian Carrillo
Brendan Carsel
Chris Carter
Susan Carter
Dolores Caruthers
Dorothy Casarez
Jorge Castillo
Laura Catrina
Terry And Alicia
Cauley
Marta Cazares
Jeannette Cedusky
Shannon Cegielski
Bruce Ceniceros
Anjali Chanana
Gupta
Howe Chao
John Chapman
Lori Christensen
Lucia Churches
Laura Churchill
Alexandra Ciraulo
Pamela Circo
Philip Cisson
Sharon Clark
Jeanne Clark
X Clark Auto Body
Heather Clay
C Cleveland
Howard Cleveland
Loni Cleveland
Stan Cloud
William Clouse
Michael Cochran
Shane Cochran
Evelyn Coker
Erin Coma
Tom Comalli
Mike Conner
Christine Conrad
Courtney Cook
Dane Cook
Sandra Cook
Tim Cook
Carol Cook
Tambra Coons
Gail Cooper
Antoinette Cordeniz
J. Michael Cordeniz
Barbara Cordero Hill
Susan Corum
Jeanine Cotton
Camille Coulter
Court Galvanizing,
Inc
Gary Cox
William Craig
Karen Creighton
Rebbecca Cristler
Colnurn Crockett
Beverly Cross
Jacquelyn Cubre
Lysette Cukar
Maria Cutler
Kim Daniel
Chuck And Nita
D'Arcy
Marjorie Daughhetee
Denise And Rich
Dauler
Dorrine Davis
Elijah Davis
Gary Davis
Maria Davis
Karen Davis
Maxcine Decosta
Leslee Defazio
Richard Defelice
Elise Defrancisco
Stevenson
Lorraine Del Soldato
Kevin Delp
Karen Demartini
Rita Denalty
Eva Denis
Peter Dennis
Robert Desaeger
Missy Desaloms
Carolyn Desmet
Armella Deutz
Roger Dickerson
Kenneth Diebert
Jennifer Dietrich
Cathy Dill
Pamela Dinsmore
Priscilla Dixon
Kimberly Dochterman
Brianne Dos Reis
Kristen Dos Reis
John Dotzenrod
Patti Douglas
Maureen Dray
Suzanne Dubois
Lorna Duck
Jackie Dufrat
Jon Duncan
Rita Duncan
Alice Dutcher
Martin Dye
Honorato Echavez
Barton Edises
Heidi Edwards
Sandra Emde
Prince Emmanuel
Marshall Employees
Julie Enck
Kelsi Eques
Anabelle & Katie Espe
Rosa Estremera
Cynthia Evarts
Bill And Fritza Ewens
Helen Fahy
Nilsson Family
Sharon Fanto
Dana Farias
James Farmer
David Farr
Betty Faucette
Marcia Faulkner
John Fawcett
Cherie Felsch
Andrew Fernino
Carl/Leslie Finzer
John Fio
Robert Fiscella
Daniel Fisher
Debra Fishman
Abbey Fisk
Darsie Fisk
Helen Flach
Linda Flagg
Caitlin Flask
Marguerite Fleming
Courtny Fletcher
Lucy Flores
Patricia Flowers
Katrina Fontana
Beth Foondos
Deborah Ford
Shirley Ford
Timothy Ford
Ken Fowler
Susan Fox
Camille Fraley
Ida Frampton
Stephen Frantz
Rose Frates
Carl Frederick
Cathy French
Cate Frey
Peggy Froehlich
Tamara Frost Trujillo
Bart & Sandy Frulan
Lori Frulan
Caroline Fudge
Dana Fuller
Trony Fuller
Bryan Furlong
Macia Gallagher
Frank & Judy Gallagher
Roger Gambatese
Nadene Gamet
Jose Garcia
Kathy Garcia
Viviana Garcia
Day And Lettie Figueroa Jen Gardner
Domingo Figueroa Beau Garland
Jerald Fikes Alexandra Gass
Kristin Finney Jennifer Gastineau
Carol Gaxiola
14
G&N George
Aleta Gilbert
Michelle Giles
Steven Gill
Mervyn Girsh
Dale Godby
Lara Gold
Erla Goller
Florence Gonzales
Saul Gonzalez
Cynthia Goossen
Tara Gosik
Vonnie Gossen
Kathy Gouveia
Catherine Gower
Tricia Graddy
Anna Grady
Rita Grady
Ann Graef
Dan Gray
Jim Greathouse
Donald Green
Louise Green
Ubuntu Green
Jo Lynne Greene
Donna Greenfield
Audra Grellmann
Jann Grenz
Joan Grenz
Jackie Griffin
Ed Grossi
Alicia Guerra
Saul Guerrero
Cathy Gulden
Ruben Gutierrez
Robert Hadler
Donna Haight
Amy Halio
Carol Hall
Cindy Hall
Kandace Halligan
Linda Halligan
Elizabeth Hamilton
Kim Hanson
Jon Hargreaves
Marjorie Harland
Gary Harmon
Ann Harriman
John Harris
Meggan Harris
Wanda Harris
Brina Harwood
Suzi Hatfield
Pauline Hauck
Virginia Hawley
Linda Hays
Gary Hayter
William Hazen
Scott Heckles
Edwin And Mary
Heeney
Michele Heffley
Susan Heidt
Dennis Heintz
Tony Held
Ahna Heller
Anna Heller
Juliet Heller
Carol Helzberg
Tyler Henderson
Henry,E.,Bennett
Jo Ann Hensel
Lynne Herlihy
Ian Hess
Kyla Hibbard
Jeannette Hickey
Judy Hickey
Jack Higdon
Julie Hintz
Sally Hitchcok
Jeannie Hitt
Lisa Ho
Johanna Hoagland
Connie Hoes
Max Hoftiezer
Melanie Holan
Kathy Holcomb
Jamie Holmes
Edward Holt
Nancy Holzman
Bob Hom
Hoover Elementry
Teachers And Staff
Charles Horton

October Donations. Making a Difference.
Teena Hosey
John Hosoume
Kurt Houston
Bonnie Howell
Isabel Huante
Chris Hummel
Kacy And Travis
Jeff Huynh
Lily Huynh
Robert Ikelman
Raymind & Dorothy
Patricia Inderbitzen
Steve & Gwen Ito
Rosanna Iversen
Kimm Ivery
Brenda Jacinto
Charisse Jackson
Lori Jackson
Marilyn Jackson
Renee Jackson
Irene Jackson
Nancy James
Wendy James
David Janis-Kitymiller
Sue Jas
Carmen Jauregui
Darlene Jemmings
Cristy Jensen
Shin Jae Jeon
Lisa Jernstrom
Diane Jewell
Maria Jimenez
Brooke Johnson
Evald Johnson
Jennifer Johnson
John Johnson
Judy Johnson
Linda Johnson
Patricia Johnson
Traci Johnson
Karen Johnson
Gary Jones
Carole Jones
Eunjung Joo
Brian Jordaine
Ruben Jordan
Marty Jorgensen
Alfonzo Jorrin
Marie Louise Joyce
Anna Juarez-
Gutierrez
Rose Kaerth
Debra Kaplan
Lisa Kassis
Marybeth
Kavanagh
Mary Kawaoka
Steven Kaweski
Skip Kearney
Jonathan Keck
Angela Keelan-
Martinez
Kim Lieng Kel
Tamra Kelly
April & Mark Kemp
Jackie Kenilvort
Andrea Kennedy
Richard Kennedy
Merribess Kerr
Tom Kielty
Diane Kieselburg
Sharon Kilgore
Evangel King
Martha King
Laura Klein
Phil Klinedinst
Joann Knoll
Kirsten Knutson
Kathleen Koblik
Kathy Kochis
Cecilia Krikau
Linda Kuk
Vijay Kumar
Sarah Kunka
Catherine Kuschell
Kathy Kyono-
Williams
Chelsea Laatsch
James Laatsch
Nanci Labrada
Trea Labrada
Glenda Lamb
Pat Langford
Della Lanter
Cheryl Laughlin
Linda Lavelock
Robert Lawson
Suzanne Lazzarini
Kenny Lazzini
Diem Le
Ho Le
Kc Leader
Kim Leclaire
Robert Ledendecker
Debbie Lee
Whitney Leeman
June Leicht
Cheri Leng
Durbin Lenoecker
Guadalupe Leon
Susan Leonard
Garth Leone
Nancy Lester
Andrew Leung
Michael Leung
Vivian Leung
Rebecca Lewis
Ronnie Leymaster
Trudy Lindaman
Marlene Lipsey-
Turrentine
Shao Liu
John Lobato
Peggy Loch
Kathleen Lockwood
Cynthia Logan
Kim Long
Jacqueline Lopes
Louis Lopez
Antonio Lopez
Maribel Lopez
John And Susan
Anna Lovely
Jonathan Lovely
Laurie Lovely
Mick Lovely
Steven Lovotti
Kermit Lowe
Louellyn Lower
Sarah Ludeman
Rachael Lunardi
Stacey Lyons
David M
James Maberry-Hall
Joe Macedo
Sue Magness
Gwen Malnassy
15
Brenda Mancebo
Gayle Mangarin
Diane Mannina
Kay Marble
Cory Marble
Phyllis Marker
Eric Marks
Sharon Marquez
Tom And Jane
Marshall
Janet Martin-Mccoey
Charles Mason
Renee Matias
Barbara Mattos
Laurie Mc Gonagill
Brigitte Mc Guire
J Mccarthy
Patrick Mccarty
Robin Mccarty
Madelynn Mcclain
Peter Mcconnen
Patrick And Sherry
Mcfarland
Eileen Mcintyre
Martin Mcintyre
Taylor Mckillop
Maggie And Dennis
Mclane
Joann Mclennan
Suzy Mcloed
Maurita Mcmurdo
Joy Meeker
Debbie Mello
Monica Mendoza
Charlene Messner
Beth Meyer
Ed Meyer
Christina Michel-
Albers
Beau Miller
Sharon Miller
Shauna Miller
Wendy Miller
Sandra Milota
Frances Miner
Melinda Miranda
Tracy Misfeldt
Adam Mitchell
Constance Mitchell
Jeri Mitchell
R & A Moldfarb
Kalyn Molzahn
Steve Monetini
Antonio Montanez
Marsha Montbriand
Elizabeth Montegue
Tara Montgomery
Merri Montoy
Elizabeth Moore
Margaret Moore
Lee Moore
Becky Moorhouse
V Moreno
Amanda Morgan
James Morgan
Judy Morgan
Liane Morgan
Terry Morgan
Morgan Stanley
Smith Barney
Jan Moroni
Catherine Morris
Shannon Morris
Bernice Morrow
Hunter Morse
Marie Moulinet
Savannah Mowry
Alisa Mulhair
Cynthia Muniz
Jason Munkby
Ben Munoz
Bronwyn Murphy
Gwen Murray
Jamie Murray
Ronald Muschetto
Melissa Musser
Winfred Mwathi
David & Regina
Narbarte
Jason Narducy
Kenneth Narducy
Lisa Narducy
Raymond Narducy
Georgette Neale
Christine Neeley
Nick Neff
Amanda Nelson
Jennifer Nelson
Kathie Nelson
Tom Nelson
Cindy Ng
Carolyn Nguyen
Hong Nguyen
Norma Nicholson
Grant Nishio
Stacey Nolan
France Northcutt
Brad Norton
Sandy Norton
Donna Norvell
Patricia Nunn
Dave O
Kerin Obrien
Elaine O'Brien
Mary Odbert
Sabrina O'Hanleigh
Wendy Olejarczyk
Carlos Olguin
Jim And Mary Ann
Olson
John O'Neill
Estella Ontiveros
Cindy Opperman
Nelia Ordona
Cynthia Oseto
Linda Owens
Teresa Pappas
Michellel Paris
Sandy & Lyle Parker
Betty Paro
Gerry Pasquetti
Debra Passanisi
Sharon Patterson
Betty Patton
Nancy Paulson
Connie Peletta
Carmen Pena
Penngrove Social
Fireman
Leslie Perez
Amelia Perez-
Guitierrez
Barbara Perkes
Ken Perkins
Sarah Perkins
Dorothy Perry
Paula Peters

Thank you to our October Donors.
Kari Peterson
William Peterson
Mihajlo Petrovic
Amy Pettitt
Jeanne Phatdouang
Jeanine Phelps
Jenise Phelps
Lindsey Phelps
Michelle Pignataro
Heather Pilmanis
Steven Pirog
Steve Pitts
Placer Placer Sierra
Bank
Cindy Pomares
Tony And Blanche
Pontarolo
Vicki Pope
Angie Porter
Jeff Potts
Cathy Powell
John Powell
Premier Medical
Supply Inc
Tamra Preston
Cris Price
Jean Priest
Tammy Prosser
Bethany Putney
Debra Quealy
Daniel Quigg
Vanessa Quinones-
Morris
Sanford Rambolt
Stephanie Rambolt
Racheal Ramierez
Becky Ramirez
Rebecca And Adam
Ramirez
Vincent Ramirez
Carolyn Ramos
Katherine Ramsey
Carmen Ranjel
Linda Rau
Latoyia Reeb
Erin Reed
Idella Reed
Michele Reiter
Kathy Reuter
Brenda Revon
Jeanette Rice
Kathy Rice
Vivian Robins
Christina Rodriguez
Virginia Roesler
Nancy Rogers
Angela Rolph
Maureen
Romanchych
B Romero
Charlotte Romine
Joann Ronning
Don Rood
Irene Rosales
Sara Rosales
Pam Rossi
Harry Roth
Marjorie Rothrock
Herm Rowland
Brandon Ruckrigl
Cristina Ruckrigl
Thomas And Allison
Rudig
Marge Rushing
Natalie Ryan
Russ Rylee
Janis Saiki
Donna Salah
Carol Salatino
Jamie Sammet
Trudy Sampson
Lolita Samson
San Francisco Deli
Erin Sanchez
Karen Sanchez
Kathleen Sanders
Lorie Sandford
Arlene Sandoval
Chris Sands
Amber Santos
Justin Santos
Nanci Santucci
Cynthia Sasser
Emily Sawyer
Linda Scardina
Kathy Schance
Kelly Scheideman
Tyler Schilling
Cindy Schlenz
Tony Schlenz
Darrin Schleth
Angel Schmidt
John Schmidt
Susan Schmiedt
Bob Schneider
Carrie Schoultz
Corinne And Sam
Schug
Bob Schultz
Raymond Schultz
Val Scott
Marc Scruggs
Joanne Seese
Carrie Sencal
John Seto
Eva Severaid
Tim Shannahan
Autumn Sharp
Brian Sharp
Linda Sharp
Clifford Shaw
Rick Shinn
Sharon
Shiroma-Lee
Petra Shulte
Margery Shunk
Stephanie Shurilla
Anthony Siciliano
Jerry Siegfried
Virginia Simms
George
Angela Simon
Pinky Singh
Sanjana Singh
Leland Sizemore
Jeff Slaton
Gary Slizeski
Anne Smith
Cheryl Smith
Kailey Smith
Linda Smith
Melodie Smith
Ronald Smith
Ken Snyder
Barbra Somner
Leah Sorensen
Pat Sorini
Stephen Sousa
Bill Southard
Catherine Souza
L Steven Spears
16
Cathy Speck
Kathy Spurr
Scott Stacey
Brian Stacey
Arthur Starkovich
Buckhorn Steakhouse
Hannah And
Sherman Stein
Debra Stevens
Steven Stewart
Nilsson Stig
Rachael
Stoutenburgh
Margaret Stovall
Debbie Stover
Debbie & Larry Strain
Renae Stramaglia-
Sells
E. Strong
Mark Stroup
S Stuckey
Beverly Sykes
Walter Sykes
Martin Taggart
Glenda Takimoto
Joshua Takimoto
Veronica Talamantes
- Valdez
Edward Talley
Evelyn Taylor
Shirlee Taylor
Dee Taylor
Edgar Tenorio
Kay Tepolt
Noel Tercero
Jennifer Terra
Barbara Thalacker
Robert Thez
Christina Thomas
Jerry And Judith
Thompson
Sandra Thompson
Scott Thompson
Denise Thompson
Gregory Thorburn
Reid Thorburn
Michelle Toccoli
Aubtin Tootan
Jean Torcom
Mariana Torres-Blair
Jennifer Tracy
Rhonda Turner
Jeff Tverberg
Blair Ulring
Rose Underwood
April Uribe
Lorie V
Judy Valadao
David Valpreda
Patrick Van Dyke
Allen Van Hoosear
Linda Van Rees
Mack And Carol
Vance
Christine Vandiver
Kathy Vanina
Monica Vazquez
Silvia Verduzco
Erin Vestal
Charlene Voelker
Beth Von Striver
James Wakefield
Steve Waldman
David Walker
Chris Wall
Sharon Walsh
Mary Walter
Charles Walters
Jim Watson
Laddie Watson
Lainie & Thomas
Watson
Jon And Peggy
Watterson
Susan Weber
Jacqueline Weber
Marianne Weber
Lauren Weber
Deborah Weber
Richard Weber
Annamarie Weibel
Michael Welch
Gail Weller
Tobbie Wells
Wells Fargo Bank
David Welsh
Susan Werner
Tammi Weselsky
David Wessner
Lynda Westwood
Doug Whaley
Bob Whitaker
Emily White
Sherry White
Kristy Whitehouse
Mahlon Whittle
Kathryn
Wickerstrom
James Wiersig
Aileen Wiggins
Peggy Wilcox
Cathy Wilkins
Nancy Wilkman
Judee Willhite
Cynthia Williams
Kevin Williams
Nicole Williams
Liz Williams
Rick Wiltshire
Nancy Winter
Nicki Winter
Carolyn Wischhusen
Gayle Witt
Coleen Wogoman
Matt Wohl
Jennifer Wolfe
Catherine Wolfram
Patricia Wong
Genevieve Woodard
Woodland Yolo
Sunset Lions Club
Duaine Worden
Roger And Judy
Worley
Emily Wu
Wulff Brothers
Livestock
Holly Wunder Stiles
Garry Wyndham
Sarah Xaynouvong
Rochelle Yadao
Karen Yamashita
Betty Yeung
Davi Yeung
Patty Yeung
Linda York
Wade Young
Donald Young
Dennis Zafiratos
Roya Ziarati
Paul Zietzsch
Jane Zima