June 2012 - The ALS Association Greater Sacramento

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
2717 Cottage Way, #17
Sacramento, CA 95825
Phone (916) 979-9265
Fax (916) 979-9271
www.alssac.org
June 2012
Support Group
Meetings &
Events
2
Dear Friends:
For many people, June is a milestone month. Young adults graduate from high school and college
and enter the next stage of their lives. Couples create an everlasting union with all of the
many June weddings. And families go on vacation making memories that will last a lifetime.
But for those living with ALS and their loved ones, every day is a milestone. Every day is precious.
Walk Update 3
How to be
the Core
Communicator
Advice from the
Trenches
4
5
Research 6
Please take a moment and think about how you can further your partnership with our Chapter
this month and into the summer by attending one of our events. It's a great way for you and
your family to get out of the house, enjoy some fresh summer air and support those living with
Lou Gehrig's Disease.
In addition to Chapter hosted events, there are many third party events that our supporters set
-up through the One Dollar Difference. You can even create your own fun and exciting event
this summer and invite all of your friends and family. Go to the One Dollar Difference website
to get started!
Maybe you would rather become even more involved with our Chapter besides attending an
event. If you have some free time, please consider volunteering. This will give you a unique
opportunity to learn more about what we do and become an important member of our team.
This is a great way to utilize your skills and talents and fight ALS at the same time.
A Father’s Day
Tribute
7
Thank you for everything you do for our Chapter. The impact of your support is felt by those in
our area living with ALS and their families. I wish you a safe and happy summer.
Sincerely,
Research 8
How you Can
Help?
9
Executive Director, The ALS Association
Greater Sacramento Chapter
In Memory 10
Advocacy and Public Policy Alert
House Approves $7.5 Million for ALSRP!
Attitude of
Gratitude
12
On May 18th, the House of Representatives passed the FY 2013 Defense Appropriations Act and
included $7.5 million for the ALS Research Program (ALSRP), a 17% increase! This is an important
victory, especially considering that Congress is looking to cut and eliminate spending—not increase
it.
Wish List! 13
Thank You’s 14
It is clear that your outreach and your personal stories are making a difference. However, the fight
is not over! The Senate still must consider its version of the bill, so we need to continue to tell our
ALS story. We will keep you updated as the legislative process moves forward and let you know
when your outreach can make the most difference.
Thank you again for your support!

Support Group Meetings and Special Events
Page 2
SACRAMENTO (Dow ntown)
Sutter Cancer Center
2800 L St reet
Sacramento, CA 95816
Breakout Session
Saturday, June 16th
10:30-12:30
Breakout Session
Saturday, July 21st
10:30-12:30
Breakout Session
Saturday, August 18th
10:30-12:30
SACRAMENTO (Fulton Ave)
Carlton Plaza
1071 Fulton Avenue
Sacramento, CA 95825
Thursday, June 14th
Thursday, July 12th
Thursday, August 9th
Noon-2 pm
PALS & CALS
(Combined Session)
Light refreshment provided.
CHICO (New Location)
2068 Talbert Drive
Suite 100
Chico, CA 95928
Thursday, June 28th
Thursday, July 26th
Thursday, August 23rd
Noon-2 pm
PALS & CALS
(Combined Session)
Pizza lunch and beverages
will be provided
Call 916-979-9265 for more
information.
STOCKTON
Call 916-979-9265 for details.
Thursday, June 7th
Thursday, August 2nd
Thursday, September 6th
10:30 am-12:30pm
PALS & CALS
(Combined Session)
Light refreshments provided.
Have question?
Contact Nancy Wakefield at
916-979-9265 for help with the
National Registry.
UPCOMING EVENTS:
Bingo!
Sunday, June 10th
1 pm at Davis Oddfellows Hall
Must be 18 or over to play
Buy in is $20.
Contact: Cherie Felsch to reserve your
spot: CAFelsch@ucdavis.edu
25th Anniversary
& Summer Soiree
“Silver Screen:
A Taste of Tinseltown”
June 23, 2012
6-11 pm/ $50 ticket/$400 table
The Library Galleria, Sacramento, CA.
(Call 916- 979-9265 for info)
Tickets include: Dinner, Dancing, Live
Music
The Ride to Defeat ALS
Saturday, June 30, 2012
Napa, California
Visit www.ridetodefeatals.org to sign
up today!
Walk to Defeat ALS
Saturday October 6, 2012
Raley Field
www.walktodefeatals.org
5th Annual Run for a Cure
Roseville, Sculpture Park
Saturday, January 5, 2012
For more information on special events or meetings call (916) 979-9265

Walk to Defeat Update
Page 3
The Walk to Defeat Website is up and we already have 35
walkers registered. A special thank you to those team
Captians that have already signed up:
Brieanne Baumbach, Mitzi’s Miracle Makers
Cindy Fuentes, Amelia’s Avengers
Monica Garcia, Benny’s Angels
Cherie Felsch, Cross/Novo/Moreno Fans
Kathy Prado, Folsom Lake Toyota Care Team
Judy Morgan, James “Tops” Morgan Team
Ashley Coleman, Love you Gobbs
Christa Emmons, Reach for the Stars
Erin Sanchez, Team Grace
Germaine Ramos, Team Olga
Julie Hintz, Tom’s Team
Whitney Toscano, Toscano
Melissa Walden, Walking for Walden
Goal: $225,000
Raised to date: $7,555
Participants: 54
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
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

How To Be the Core Communicator About Your Health
Page 4
By Barbara Bronson Gray, RN, MN
If you’re like many people, you see several health providers. In addition to a general
practitioner, you may also have specialists, dentists, ophthalmologists, and even an
emergency room doctor or urgent care provider. Unfortunately, you can’t assume one
health provider knows what the other has done or prescribed for you.
So you have to be the central communicator. Unfortunately, that role requires a fairly
high level of knowledge about medicine and the ability to get written information from
one specialist so you can send it to another.
The more complicated your problems, the more fragmented your care will be. The
average Medicare patient sees two physicians and five specialists a year, (according
to The Fragmentation of American Health Care: Cases and Solutions, edited by Einer Elhage). Those with a
chronic illness see an average of 13 physicians a year.
It's important you know that no one is picking up your medical records and automatically delivering them to the
physicians in your life who should know what's happening with you. Consider yourself the person most responsible
to collect written updates, copies of test results and lists of new and changed medications and get them to all your
other healthcare providers.
What should you do?
When you get a test result, procedure or have surgery, get the summary in writing, keep a copy, and send or
bring copies to all your other healthcare providers. Attach a simple note: "Wanted to keep you up to date on my
health status. Please put this in my chart." If it's an important healthcare issue, be sure to bring up the data
or problem at your next visit and mention that you sent a written summary for inclusion in your medical record.
Keep a list of all your medications and update it any time a healthcare provider adds or deletes a drug or
changes a dosage. Bring a copy of that list to your medical appointments and to the emergency room if you
end up there. Keep the list with you when you travel.
Don't leave your dentist or your optometrist/ophthalmologist out of the loop. They need to know the details of
your general health status. It will help them diagnose and treat any issues they may identify with you. Be sure
they know you have ALS, and if you have any infections, immune issues, heart problems, chronic conditions or
are taking blood thinners or antibiotics, as well as other medications.
If you have a test or procedure and you do not hear the results soon afterwards, do not assume the results
were normal. Call the healthcare provider who ordered the test and ask the office staff to email or send you a
written copy of the test summary. Keep a copy in your own "medical updates" file. If the test was indeed OK,
you still should have copy for reference at a later time, if needed.
If you or someone you love ends up in the hospital, your role of communicator will be even more vital. Often
multiple consulting physicians -- specialists -- are called by the admitting physician to weigh in on issues and
questions that develop while you're in the hospital. They don't always talk to each other or even realize who
has changed or added a medication, who has ordered a test, or what results are in. The more you communicate
the better. If you are being asked to go back for a test you already had or if you have questions about
what is happening, don't assume someone at the "nurses' station" has it all managed. Ask questions and be
sure you understand what tests you're getting and why. If you are being discharged from the hospital ask for
the results of any tests or procedures you had in the hospital.
These recommendations may sound a little over-whelming. But it’s usually not so hard. Just remember: Get written
copies of every test, procedure and surgery, keep a copy of each for yourself (you'll be the only person in the entire
healthcare system with a complete copy of your own medical record), and give copies to your healthcare providers.
Ask questions when you don't understand why someone wants to order a test for you. Bring a knowledgeable person
along with you to healthcare appointments, if you like.

Advice from the Trenches
PAGE 6
Sandra Lesher Stuban is an RN who was a 38-year old Lieutenant Colonel in the Army
when she was diagnosed with ALS. She’s the author of "The Butcher’s Daughter: The
Story of an Army Nurse with ALS," in which she describes her journey openly and honestly.
Although she is completely paralyzed and uses a ventilator, she lives an active life
as a writer and nursing leader.
Q: I’ve had ALS for a couple of years now and am now facing significant mobility issues.
I just realized summer is right around the corner, and so many of the things I always
loved to do seem so hard now, even impossible. I realize that recreation and leisure
don’t mean the same thing to me as they once did. Sometimes just going anywhere
seems like more work than it’s worth. How do you deal with this? How can I look at leisure
differently, with more interest, anticipation and enjoyment?
A: This is probably one of the most difficult adjustments those of us with ALS must make. But it’s possible and
necessary to enjoy your new life with ALS. Your idea of recreation and leisure activities may have been a round
of golf, training for a marathon, a game of tennis or pickup basketball. You must now begin the transition from
being an active sports participant to being involved and engaged mentally. You must change your emphasis
from the physical to the mental.
How do you do that? It requires a determination not to dwell on the frustration of losing an ability but rather looking
ahead positively and figuring out what you can do about it. Accept the issue as you would accept a challenge
to compete.
Here are some ideas about how you can approach this:
Invite your friends to join you in your home to watch your favorite team or sport on TV.
Invite your friends to attend sporting events. All major league sports such as baseball, basketball, football,
soccer and hockey have accessible venues. Wheelchair accessibility is not an issue.
Play fantasy sports. This has become a very popular hobby with millions of Americans participating. Participants
act as owners to build a team that competes against other fantasy owners based on statistics of
individual actual professional players. Examples of fantasy sports include baseball, basketball, football,
golf, hockey, auto racing, professional wrestling and surfing.
Become an enthusiast for the Summer Olympics. With the Summer Olympics just around the corner (July
27 to August 12), you can plan get-togethers to cheer our athletes to victory.
Another form of leisure is as close as your computer. Discover online games. Yahoo Games
http://games.yahoo.com/ is one website that offers a variety of choices including board games such as
chess and checkers, card games such as blackjack and euchre, puzzles and word games. There are
also online Scrabble, Words with Friends, Angry Birds, and much, much more.
If you would like to submit questions for a future Q & A, please send your questions to theexchange@alsanational.org.
Please understand that we won’t be able to address all questions and we won’t be able to respond
to individuals personally.

Research Update
Page 6
Drug Company Working Group Meeting Attracts Professionals from Academia and Industry to Discuss Therapeutic Opportunities
for ALS
In April, at The American Academy of Neurology Annual Meeting in New Orleans, The ALS Association brought together an overflow
crowd of researchers, industry executives, and many others, all with the common purpose of finding new treatments for ALS. The meeting
of the ALS Drug Company Working Group organized by the Research and Public Policy Departments of The ALS Association was
standing room only, an indication of the broad interest in the research and drug development world in developing treatments for the
disease.
“Our purpose for the meeting was to encourage those in the field and those thinking of getting into it, to talk with each other, and to
share ideas and strategies for fighting ALS. That's what will help us move ahead,” said ALS Association Chief Scientist Lucie Bruijn, Ph.D.
The latest news on the trial of antisense therapy against SOD1 was discussed by Frank Bennett, Ph.D., of Isis Pharmaceuticals, which is
developing the drug for treatment of familial ALS due to SOD1 mutations. Final results of the trial were then presented the following
day by Timothy Miller, M.D., Ph.D., of Washington University in Saint Louis. In this double-blind trial, antisense molecules that bind to
SOD1 messenger RNA were injected into the spinal cord in 21 patients.
The intent of the treatment is to shut down production of SOD1 and alter the progression of the disease in familial ALS. However, Dr.
Bennett said that the trial was meant to establish safety, not test efficacy, and the drug was given only once, rather than multiple times
over a prolonged period, as would likely be needed to have an effect on disease progression. Additional studies would be needed to
determine the efficacy of this treatment.
Drs. Bennett and Miller reported that the trial showed that single doses appeared to be safe with the most important side effects related
to the delivery of the drug, not the activity of the drug once inside the spinal cord. Because it is delivered by lumbar puncture
(injection into the intrathecal space surrounding the spinal cord), treatment is associated with an increased risk of headaches, nausea,
and vomiting.
Tests performed on patients showed that the drug achieved the predicted levels in the cerebrospinal cord and in the blood. “This was
an important trial for studying the intrathecal delivery of antisense oligonucleotides,” Dr. Bennett said, as it was the first time that the
procedure had been performed.
Dr. Miller noted that the antisense molecule targets all types of mutations of SOD1, rather than being mutation-specific, which would
increase its potential utility if it turns out to be effective. Some evidence suggests that normal SOD1 may be involved in sporadic ALS,
and that lowering it may be therapeutic. If so, Dr. Bennett said, antisense therapy may be helpful. He also noted that antisense directed
against the C9ORF72 gene may be therapeutic if it is shown that the disease it causes is due to a new toxic substance, rather than the
absence of normal protein from the gene.
Steve Han, M.D., Ph.D., of Massachusetts General Hospital in Boston, and the Department of Stem Cell and Regenerative Biology at
Harvard University, discussed progress toward the development of ALS models using induced pluripotent stem cells (iPS cells) from patients
with ALS.
In this system, cells are taken from the skin of a patient, grown in a lab dish, and then, by application of a cocktail of growth factors,
transformed into iPS cells, which multiply to make many millions of cells. These cells can then be transformed into motor neurons. The
value of this system is to rapidly create many identical cells for study in the lab, all of which contain the same genetic mutation that
caused the patient's ALS. These cells can be used to learn more about what causes disease and to screen drugs as potential therapies.
The lab has developed iPS cell lines with mutations in SOD1, TDP-43and FUS and has begun development of lines with C9ORF72 and the
ALS risk factor ataxin-2.
FUS (Fused in Sarcoma) is currently a major target of research in the lab. The FUS protein binds RNA, the messenger cells used to translate
genes into proteins. It is normally found in the cell's nucleus, but the mutations that cause ALS relocate it to the cytoplasm in the
cell's periphery. The more FUS is mislocalized, the earlier the disease begins and the more severe it is, Dr. Han said.
Dr. Han is currently comparing cell lines from two different sources with different FUS mutations to understand more about how specific
mutations affect neurons. One notable feature in FUS mutants is their effect on so-called stress granules. These structures appear
in cells in response to stress and are thought to be part of a protective response. In some FUS mutants, though, these granules, which
are in the cytoplasm, appear to be adversely affected by the presence of FUS. Dr. Han is investigating the details of that effect, which
may lead to better understanding of how the mutant causes disease in motor neurons. Continued on page 8.

A Father’s Day Tribute
I have been sewing
since I was 9 and
started quilting in
my late 20’s. When
I saw all the wonderful
team T-shirts
at the Walk to Defeat
ALS, I just
knew I needed to
make this quilt for
the ALS Association
in memory of
my dad, Herman
Whittle.
Dad enlisted in the
Air Force and
served during
WWII, Korea, and
Vietnam. We were
in Japan in the late 50’s, settled in Vacaville, and then Mom and
Dad retired in Woodland.
Dad was handy with his hands, always fixing, building, or planting
something. He could almost wave his hand over the car and fix
whatever was broken. Weakness in his hands was the first sign of
ALS. He was 76 when diagnosed and lost his battle 3 and 1/2
years later. He kept a cheerful and inventive spirit to the end.
The Sacramento ALS chapter was very helpful. All the meetings,
speakers, and support were invaluable in dealing with the day to
day effects of ALS. Herman was truly one of the good guys, a wonderful
person, and the
best dad! Our family
wants to do what we
can to erase this disease
from the face of
In honor of Herman Whittle (pictured here)
Juanice continues to raise
funds for The ALS Association,
Greater Sacramento
Chapter by walking
to defeat ALS.
Her newest contribution is
this beautiful hand made
quilt that will be auctioned
off at the associations 25th
Anniversary “The Summer
Soiree” on June 23rd.
Thank you for all of your
support, Juanice!
A Prayer for My Father
PAGE 7
Dear Lord, I ask for your guidance
As the path ahead is so unclear.
As the reality settles in and our hope
falters,
I ask for you to fill our hearts with
faith.
Replace our fears with courage and
strength
So we may surrender to you and your
mysteries.
While ALS consumes my father’s body
I pray that you will protect his spirit.
When his legs can no longer carry him
And his hands grow still,
I pray your love will move him forward.
When his voice falters and he can no
longer speak,
I pray your words will give him
strength.
And finally, when his time is near
And his breath grows shallow,
I ask for your mercy and compassion.
Please embrace him completely,
Encircle him with your truth,
Comfort him and bring him to you.
God, grant him peace.
Written for William John Reuss (Bill)
by his daughter Jackie Charonis
March 21, 2012

Research Update
Page 8
Continued from page 6.
The ALS Association invited Steve Perrin, Ph.D., of the ALS Therapy Development Institute, to update the group on TDI's development
of a therapeutic strategy targeting the body's immune system. Their work in mouse models has identified an immune pathway
that appears to overactivate a certain type of T cell (one major type of immune cell), which carries a receptor called CD40. This
activation leads to inflammation, which is thought to contribute to the disease process in ALS. TDI has worked to develop an antibody
that blocks CD40, preventing activation of the T cell and increasing survival in mice. The antibody itself doesn't get into the
central nervous system but may exert part of its beneficial effect by preventing other immune cells, called macrophages, from
crossing into the central nervous system where they may do damage.
Currently efforts are underway to develop a human antibody against the CD40 ligand. However, TDI demonstrated that the same
pathway can be intervened by using an oral drug called fingolimod, which may have benefit in ALS patients. This drug, trade name
Gilenya, was recently approved by the Food and Drug Administration for the treatment of multiple sclerosis. TDI is in early stages
of planning a trial to test this compound in ALS. There are concerns about safety based on data from the use of the drug in multiple
sclerosis. Dr. Perrin noted that the trial, which is still in the early planning stages, may require 24-hour monitoring of heart function
to determine if treatment causes the heart irregularities seen in a small proportion of MS patients.
Mark Boutin, Executive Vice-President and Chief Operating Officer of the National Health Council (NHC), discussed the MODDERN
Cures Act (HR 3497), legislation endorsed by The ALS Association and introduced in Congress by Representative Leonard Lance (R-
NJ). The bill would help accelerate the search for a treatment for ALS and other diseases by removing the barriers that limit medical
innovation and by providing incentives to develop new treatments and diagnostic tools.
He noted that despite increases in federal spending for medical research, the rate of new drug approvals has not increased.
“Money is not the only barrier to development of new therapies,” Boutin said. As important are four barriers that inhibit the interest
of pharmaceutical companies from taking risks in the development of new therapies. Addressing these barriers could rapidly
change the development landscape.
The first barrier, and the most important, is the problem of “intellectual property.” In the large majority of cases, it is difficult or
impossible to obtain a patent on a potential therapy (this is true for all disorders, not just ALS). “We see this again and again,” said
Boutin. Patents expire after a certain number of years, and the clock begins ticking not when the therapy is marketed, but at the
beginning of a clinical trial development program.
The development of a new drug, particularly for ALS, can take 15-20 years, reducing the potential return on investment; thus, many
are not begun. The MODDERN Cures Act would create a new legal class of drugs called “dormant therapies,” which are those therapies
that show promise in treating a disease with unmet medical needs, like ALS, but which have weak or no patent protection.
Such dormant therapies would be afforded a period of “data exclusivity,” which offers incentives for development similar to those
of patents. However, unlike patents, the period of data exclusivity would begin at the time of FDA approval so that manufacturers
are not penalized for pursuing treatments for diseases like ALS that can take 15 or more years to develop.
The other barriers relate to the ability to develop biomarkers and other diagnostic tools that can help speed treatment development
by informing whether or not and in whom a drug may be effective much earlier in the development process. Even effective
medicines work in an average of only 60% of patients because of genetic differences between individuals that affect response to
the drug.
“We have few effective tools to determine who a medicine will work for,” Boutin continued. Even when a diagnostic test is developed
to determine differential response, it may take years to obtain the necessary medical coding from the government to allow
reimbursement for the test. Nevertheless, the reimbursement is often too little to support the cost of the test. Regulatory and
statutory changes included in MODDERN Cures could encourage development of such tests, speed the ability to obtain a reimbursement
code, and better match reimbursement to costs. The National Health Council and The ALS Association are working with
Congress, the FDA, the White House and industry to enact the legislation as soon as possible.
“These are the kinds of efforts that we need to move our search for new treatments forward,” Dr. Bruijn said. “That is what all of
us are focused on.”

How You Can Help
Retire with Meaning - Help Your Kids & Fight ALS, Too
How you Can Help? PAGE 9
Since you first started working, you’ve been regularly reminded of the importance of saving for retirement. Now you may
find that your retirement savings are more than adequate. In addition, retirement assets are one of the most heavily
taxed assets we own. Without proper planning, retirement assets may be subject to both estate and income taxes after
you pass away.
Donating all or part of a retirement plan to The ALS Association may be an attractive option. Since we are a charitable
institution, we are exempt from paying the taxes that might otherwise be owed by your heirs and you will also receive an
estate tax charitable deduction. This tax-wise move makes other assets you own available for loved ones. Making us the
beneficiary of a retirement plan is so easy to do.
Simply request a ‘Change of Beneficiary’ form from your advisor or the custodian of your account. Your plan administrator
can send you a beneficiary designation form, which are often available online. The phone number and website of
your plan administrator can found on your financial statement. Remember, you can name us as a partial beneficiary, the
beneficiary of the entire amount or as a contingent beneficiary.
Don't forget to incorporate the following legal description on the beneficiary designation: The Greater
Sacramento (Tax ID 68-0159292), with its principal office in Sacramento, CA.
A Very Special Thanks to the Following Sponsors for their
Support of the 25th Anniversary Summer Soiree!

In Memory of Our PALS Page 10
Janet Wilson
Janet C. Wilson, 62, of Weaverville died at home May 16, 2012, of ALS. She was
surrounded by loved ones and went home to the Lord.
She was born on June 4, 1949, in Tacoma, Wash., to Albert and Edna Roth. She and her
family moved to Trinity County in 1981 from Eureka, Calif. She spent many years homesteading
with her husband and children; an avid cook, and a friend to many. She had a
knack for selling and her retail experience included such businesses as the Lace Corner,
the Western Shop and Tops Market. She volunteered at HRN and was an active member
of her church. She and her husband owned and operated the Trinity Theatre for several
years. Quilting, laughing, walking with her grandchildren and making pie or brownies were
some of her favorite things.
A loving mother and grandmother, and a generous friend, she will be greatly
missed. She was diagnosed with ALS in June of 2009. Her last three years were an ongoing
episode of tragedy and laughter as her illness progressed. Varying forms of ambulation,
transportation and communication became the focus of living. Many of us will remember her speed-demon attitude
while driving her power wheelchair sometimes into the ditch or off the sidewalk. Life was an ongoing adventure for
Janet and she expressed that with courage and joy all the way to the end. Stubborn at times and adamant about her
wishes, Janet was a shining light who touched many lives.
She is survived by her husband, Greg Wilson of Weaverville; daughters Ronda and Ruth, both of Weaverville;
grandchildren Travis Burns and Alya Grillo of Weaverville; brother, Walter Roth (Helga) of Hollister, Calif.; ex-son-in-law
Foster Burns of Weaverville; and many friends.
A memorial service will be held for her loved ones at a later date. In lieu of flowers or gifts, donations can be
made to the ALS Association, Greater Sacramento Area, 2717 Cottage Way Suite 17, Sacramento, CA 95825 or go
online www.alssac.org. Arrangements are being handled by Forrest Funeral Home, Weaverville.
Robert Lee Vyvlecka
Robert Lee Vyvlecka passed away at home surrounded by his family on Thursday, April
19, 2012, in Davis at the age of 81, after a long battle with ALS. He was born in Jourdanton,
Texas, on Oct. 9, 1930, to Joseph and Adela Vyvlecka. He served in the U.S. Army during the
Korean War (1951-53).
Robert married Janet Havrda in Schulenburg, Texas, on April 27, 1957, and the couple
moved to California where they enjoyed 55 years together. They raised their five children in
Davis. His favorite hobbies were drawing, painting, gardening, hiking, camping, woodworking,
metal detecting and inventing things. He was a hard-working man, always providing for his
family.
Robert is survived by his wife, Janet Vyvlecka; sons Robert (Teresa) Vyvlecka of Woodland,
James Vyvlecka of Colorado Springs, and Kenneth (Beth) Vyvlecka of Kearney, Neb.; and
daughters Diane Medina (Lucas) of Cameron Park, and Carrie Schaefer of Sacramento.
He was blessed with 21 grandchildren and 5 great-grandchildren.
Robert is also survived by his brothers Joe and Frank Vyvlecka, and
sisters Rose Marie Jaksik of Jourdanton, Texas, and Florence Polk of Fountain
Hills, Ariz.
In lieu of flowers donations can be made in his memory to the ALS
Association, Sacramento Chapter (www.alssac.org). Those who wish to sign a
guestbook online may do so at www.wiscombefuneral.com.
We extend our deepest sympathy and support
to those families and friends who
have recently lost their loved ones to ALS.
In their honor we will continue our fight
for a cure.
Daniel Cole
Vince Bezdecheck

Smooth Operators! VPD Rocking Beards for a Cause! PAGE 11
Folsom-based Video Products Distributors,
founded in 1980, is one of
the nation’s original video distributors.
The following article, which ran
in the winter 2012 issue of VPD’s
quarterly newsletter, Up Close, describes
a fund-raising event staged to
support the ALS Foundation and a
long-tenured VPD employee who was
recently diagnosed with the disease.
Thornton
Hair-raising? More than anyone dared anticipate. Still, when the scruff was scored, VPD’s
beard-growing contest to raise money for the ALS Foundation netted a generous $600—
monetary contributions from participants and a match from VPD. The idea, first hatched by
Dave Skelton, and further incubated Bill Eilbacher, Levi Jones and Bill Southard to add the charity
element, convinced many of VPD’s clean-shaven to lay down their razors and open their
wallets. Some never made it past the stubble; others are still sporting it, and no one bested
Matt Bailey’s facial carpet. And though not all of us were exactly whiskered away by what we
saw, everyone can agree that real men wear beards (whether they probably should or not). –Jenn (Copywriter, VPD)

Jumping out of a Proper Plane on Purpose: By Cathy Speck
Page 12
Look, up in the sky! It's a speck; it's a dot; it's getting bigger; it looks human-ish; it's
two flying humans. Wow! It's a parachute, a brightly colored parachute, and it's
beautifully and gracefully floating through the sky with two humans gripping on to
their straps. They're getting closer, and I can see... hey, that's my friend April in
that tandem splendor!
Cathy Speck—Post Jump with Sean
Harrison, April 2010
After my dear friend April landed safely with her instructor aka "jump master" at
SkyDance Skydiving at the Yolo County Airport, she had a few things to say. When
she caught her breath “At first, it's kind of a terrifying experience, but eventually
you realize that it will all be okay.”
Later, when April Kamen and I were hanging out on the ground waiting for others
to jump, a handsome, well-dressed man holding a microphone approached me:
"So, Cathy, tell me what's going on here today." I kind of heard what he said, but
really my mind was goin' round and ‘round: who IS this guy? Wait, he's Richard
Sharp the TV news reporter from KCRA channel 3! Then instead of speaking into
his microphone, I spun around in circles, and yelped excitedly like our doggie Mazie
does when we come home from work.
Fortunately April jumped in and saved the moment on air by chiming in: "When people get the ALS diagnosis, it's like
being shoved out of a plane, with no parachute, and they don't know what's going to happen to them," she said still
gleaming.
As co-producer of the event, I like to affirm that ALS Skydiving Specktacular has really taken off, just like a
plane. “Everyone was invited to skydive or hang out, have a picnic and watch friends flying toward earth, but I emphasize
that the purpose of this event is to raise awareness for ALS and raise money so that the Specktaculars can give a
super big chunk of money to the Walk to Defeat ALS.
"We are determined to raise $15,000 toward improving quality of life for PALS, and finding a cure for ALS, most commonly
called Lou Gehrig’s Disease says event co-producer Jae Templeton. The Specktaculars, a team composed of
friends, family and co-workers of former Davis Food Co-op Safety Director, singer-songwriter and native Davisite Cathy
Speck, will be walking for our cause at the October 6th Sacramento Walk to Defeat ALS.
“In my opinion, any ALSSAC event is a unique opportunity to talk personally with ALS staff, people who have ALS and
their families and friends”. The mission of ALSSAC (ALS Association, Sacramento Area Chapter) is to empower people
with ALS and their families to live fuller lives by providing them with compassionate care and support, and to lead the
fight to cure and treat ALS through global, cutting-edge research. I declare truthfully, and often, that ALSSAC has
saved my life. Well, you know, I'm going to die of ALS, but I'm not done yet, and ALSSAC keeps me going."
Here is a link to the KCRA video on Yahoo! http://news.yahoo.com/
video/sacramentokcra-28855299/skydivers-fill-skies-for-a-l-s-
29357288.html
Sac Bee News:
http://www.sacbee.com/2012/05/22/4506864/supporters-takeleap-of-faith.html
Here is a link to the Sacramento Bee's photo essay:
http://www.sacbee.com/2012/05/20/4504039/als-skydivingspecktacular.html?mi_rss=Photo%20Galleries
Cathy Speck, Linda Duval and Robin Terra:
enjoying the shade and view of skydivers!

Lessons (horseback, tennis, golf, ski, etc.)
Wine packages
Jewelry
Sports tickets/package or jersey
Electronics/gadgets
Concert/theatre tickets
Sporting equipment
Spa/beauty packages
Bath/body products
Rounds of golf at local country clubs/courses
Dinner party
Private plane ride/trip
Digital camera/accessories
Unique home/garden items
Summer Soiree “Wish List”
Looking for ways to help The
ALS Association raise funds?
Consider making a donation tour
Star/ALSA Walk of Fame Raffle
or our Live Auction being held on
Saturday, June 23rd and you’ll
help us find a cure for ALS.
Themed basket ideas: Holiday, Relaxation, Chocolate/Gourmet treats,
Coffee or tea, Bath & Body, Movie Night/Family game night, Music, Travel
activities for kids, Tailgate, BBQ, Picnic, Gardening, Pool party, Romance.
Call Amy Sugimoto at the
Chapter office ( 916) 979-
9265. for more information
or to make a donation.
Live/Super Silent Ideas! unique “can’t-be-bought-in-stores” items
Auto show tickets/night out
Caribbean vacation
Ladies getaway to Chicago, NYC or Las Vegas – (spa, shopping, gourmet restaurant, etc.)
Kentucky Derby package
Pebble Beach golf trip
Car lease
Use of a suite/box seats – sports or concerts/events
Pig roast/hay ride party
San Francisco/Napa Valley weekend
Golf package exclusive
Los Angeles/Hollywood – movie/TV set trip
Oprah tickets/Chicago trip
Golf/poker/cigars day for the guys
Multi-family cookout & activity
Paris trip
American Girl Chicago or NYC trip
Grand Canyon or Yellowstone package
Autographed sports memorabilia or jerseys
Use of a vacation home/timeshare
Airfare
Volunteers
Needed!
Have you ever
wanted to volunteer
for a special event?
If so, we have a
great opportunity for
you to show your
support of The ALS Association, Greater Sacramento
Chapter.
We need volunteers for set up, clean up,
auction, and serving food and drinks. For
more information please contact Alycia Cahill
at 916-979-9265

Thank you to our May Donors! You make our programs and services possible.
Mitzi Aguirre
Tom and Betty Akashi
Ruth Alves
Ceci Ambriz
Courtney Austin
Frances Avrin
Ann Bardy
Judith Barmack
Matthew Barmack
Laurie Bartlett
Bill Barton
Kevin Broadbent
Tom Brown
Linda Butler
California's Great America
Judy & John Callahan
Jackie Camey
Ruth Causey
Jacqueline Charonis
Kristopher Chiles
Pamela Circo
Ashley Coleman
Mark Coleman
Crocker Art Museum
Crossfit Gold
Dad's Kitchen
Margaret Dillard
Disneyland Resort Community
Relations
Elk Grove High School Photo Club
Beata Elliot
Rancho Cordova Emblem Club
Charles Fisher
Bruce Fisher
Gino Galli
Gatsby's Diner
Otto Glaubitz
Alexandra Gonzalez
Brian Grassadonia
Jeff Hancock
Linda Hays
Juanice Hess
Heather Hill
Michael Hodge
Beryl Holms
Kenneth Humphreys
Jamie's Bar & Grill
Thomas Johnson
Ruben Jordan
Sharon Juang
Pat Kemper
Blythe Klipple
Charlotte Lawrence
Alan Lefko
Steven Lovotti
Lynn Greene Photography
Nancy Mah
Laura Martinez
Janet Martin-McCoey
Janet Milburn
Cynthia Milford
Judy Morgan
Raymond Narducy
NCAA
Chris Nelson
Sandy Nelson
Samantha Nelson
Norma Nicholson
Dan Nishio
Denyse Nishio
Garrett Nishio
Marilyn Nishio
Ross Nishio
Sandora Nishio
Jodi Nygaard
Shirley Olney
Paragary Resturant Group
Gerry Pasquetti
Permobil
Frances Petrocelli
Doug & Linda Pinkham
Jennifer Porter
Donald Porter
Premier Medical Supply Inc
Lucille Ratermann
Emily Reid
Donald Ricci
Pam Richardson
Shawn Roessler
Paul Rosenstiel
Sacramento Zoological Society
Safeway Inc.
Salsa Fresca Mexican Restaurant
Kathleen Sanders
Arlene Sandoval
Cindy Schlenz
Ross Schmiedt
Steven Scott
Scott Bie & Associates, LLC
Barbara Seley
Anthony Sertich
Carolyn Shadinger Jr.
Autumn Sharp
Jennifer Sherman
Diana Siefkes
Adam Simowitz-Price
Skylar Skikos
Ron Smith
St. James Womens Guild
Minna Tao
The Cheesecake Factory
The Squeeze Inn
Ron Thompson
Ronald Thompson
Ed & Ludmila Trautt
Akemi Turner
Amanda Ursini
V.P.D. IV Inc.
Karen Van Skike
Sharon Vargas
Jennifer Walden
Huey Chen Wang
Kathryn Webb
Gail Weller
Richard Whitehouse
Daniel Wood
Rumi Yokota
Michael Yolken
Rich Zogaric
Your Help Counts!
Our patients, caregivers
and office staff
need help with a variety
of projects from
office tasks and data
entry to picking up
and dropping off
equipment to patients.
The office is open
daily from 9 am to 5
pm. Not all of the
tasks are glamorous,
but it doesn’t take
much to make a big
impact in the lives of
others. If you have a
couple of spare hours
and would like to get
involved please call
Alycia Cahill at 916-
979-9265.
VOLUNTEER TODAY!
A very special
thanks to everyone
that contributed
to our
Durable Medical
Equipment
Program in
May.
Jim McCrown
Gail Cordeiro
Bonnie Jose
Marilyn Dray
Deanna Boyles
Janet Vyvlecka
Tamera Preston