June 2012 - The ALS Association Greater Sacramento
June 2012 - The ALS Association Greater Sacramento
June 2012 - The ALS Association Greater Sacramento
Create successful ePaper yourself
Turn your PDF publications into a flip-book with our unique Google optimized e-Paper software.
<strong>The</strong> <strong>ALS</strong> <strong>Association</strong>, <strong>Greater</strong> <strong>Sacramento</strong> Chapter<br />
Newsletter<br />
Patients • Caregivers • Families • Donors<br />
Proudly serving 24 counties in Northern California<br />
from the Sierras to the Oregon Border<br />
2717 Cottage Way, #17<br />
<strong>Sacramento</strong>, CA 95825<br />
Phone (916) 979-9265<br />
Fax (916) 979-9271<br />
www.alssac.org<br />
<strong>June</strong> <strong>2012</strong><br />
Support Group<br />
Meetings &<br />
Events<br />
2<br />
Dear Friends:<br />
For many people, <strong>June</strong> is a milestone month. Young adults graduate from high school and college<br />
and enter the next stage of their lives. Couples create an everlasting union with all of the<br />
many <strong>June</strong> weddings. And families go on vacation making memories that will last a lifetime.<br />
But for those living with <strong>ALS</strong> and their loved ones, every day is a milestone. Every day is precious.<br />
Walk Update 3<br />
How to be<br />
the Core<br />
Communicator<br />
Advice from the<br />
Trenches<br />
4<br />
5<br />
Research 6<br />
Please take a moment and think about how you can further your partnership with our Chapter<br />
this month and into the summer by attending one of our events. It's a great way for you and<br />
your family to get out of the house, enjoy some fresh summer air and support those living with<br />
Lou Gehrig's Disease.<br />
In addition to Chapter hosted events, there are many third party events that our supporters set<br />
-up through the One Dollar Difference. You can even create your own fun and exciting event<br />
this summer and invite all of your friends and family. Go to the One Dollar Difference website<br />
to get started!<br />
Maybe you would rather become even more involved with our Chapter besides attending an<br />
event. If you have some free time, please consider volunteering. This will give you a unique<br />
opportunity to learn more about what we do and become an important member of our team.<br />
This is a great way to utilize your skills and talents and fight <strong>ALS</strong> at the same time.<br />
A Father’s Day<br />
Tribute<br />
7<br />
Thank you for everything you do for our Chapter. <strong>The</strong> impact of your support is felt by those in<br />
our area living with <strong>ALS</strong> and their families. I wish you a safe and happy summer.<br />
Sincerely,<br />
Research 8<br />
How you Can<br />
Help?<br />
9<br />
Executive Director, <strong>The</strong> <strong>ALS</strong> <strong>Association</strong><br />
<strong>Greater</strong> <strong>Sacramento</strong> Chapter<br />
In Memory 10<br />
Advocacy and Public Policy Alert<br />
House Approves $7.5 Million for <strong>ALS</strong>RP!<br />
Attitude of<br />
Gratitude<br />
12<br />
On May 18th, the House of Representatives passed the FY 2013 Defense Appropriations Act and<br />
included $7.5 million for the <strong>ALS</strong> Research Program (<strong>ALS</strong>RP), a 17% increase! This is an important<br />
victory, especially considering that Congress is looking to cut and eliminate spending—not increase<br />
it.<br />
Wish List! 13<br />
Thank You’s 14<br />
It is clear that your outreach and your personal stories are making a difference. However, the fight<br />
is not over! <strong>The</strong> Senate still must consider its version of the bill, so we need to continue to tell our<br />
<strong>ALS</strong> story. We will keep you updated as the legislative process moves forward and let you know<br />
when your outreach can make the most difference.<br />
Thank you again for your support!
Support Group Meetings and Special Events<br />
Page 2<br />
SACRAMENTO (Dow ntown)<br />
Sutter Cancer Center<br />
2800 L St reet<br />
<strong>Sacramento</strong>, CA 95816<br />
Breakout Session<br />
Saturday, <strong>June</strong> 16th<br />
10:30-12:30<br />
Breakout Session<br />
Saturday, July 21st<br />
10:30-12:30<br />
Breakout Session<br />
Saturday, August 18th<br />
10:30-12:30<br />
SACRAMENTO (Fulton Ave)<br />
Carlton Plaza<br />
1071 Fulton Avenue<br />
<strong>Sacramento</strong>, CA 95825<br />
Thursday, <strong>June</strong> 14th<br />
Thursday, July 12th<br />
Thursday, August 9th<br />
Noon-2 pm<br />
P<strong>ALS</strong> & C<strong>ALS</strong><br />
(Combined Session)<br />
Light refreshment provided.<br />
CHICO (New Location)<br />
2068 Talbert Drive<br />
Suite 100<br />
Chico, CA 95928<br />
Thursday, <strong>June</strong> 28th<br />
Thursday, July 26th<br />
Thursday, August 23rd<br />
Noon-2 pm<br />
P<strong>ALS</strong> & C<strong>ALS</strong><br />
(Combined Session)<br />
Pizza lunch and beverages<br />
will be provided<br />
Call 916-979-9265 for more<br />
information.<br />
STOCKTON<br />
Call 916-979-9265 for details.<br />
Thursday, <strong>June</strong> 7th<br />
Thursday, August 2nd<br />
Thursday, September 6th<br />
10:30 am-12:30pm<br />
P<strong>ALS</strong> & C<strong>ALS</strong><br />
(Combined Session)<br />
Light refreshments provided.<br />
Have question?<br />
Contact Nancy Wakefield at<br />
916-979-9265 for help with the<br />
National Registry.<br />
UPCOMING EVENTS:<br />
Bingo!<br />
Sunday, <strong>June</strong> 10th<br />
1 pm at Davis Oddfellows Hall<br />
Must be 18 or over to play<br />
Buy in is $20.<br />
Contact: Cherie Felsch to reserve your<br />
spot: CAFelsch@ucdavis.edu<br />
25th Anniversary<br />
& Summer Soiree<br />
“Silver Screen:<br />
A Taste of Tinseltown”<br />
<strong>June</strong> 23, <strong>2012</strong><br />
6-11 pm/ $50 ticket/$400 table<br />
<strong>The</strong> Library Galleria, <strong>Sacramento</strong>, CA.<br />
(Call 916- 979-9265 for info)<br />
Tickets include: Dinner, Dancing, Live<br />
Music<br />
<strong>The</strong> Ride to Defeat <strong>ALS</strong><br />
Saturday, <strong>June</strong> 30, <strong>2012</strong><br />
Napa, California<br />
Visit www.ridetodefeatals.org to sign<br />
up today!<br />
Walk to Defeat <strong>ALS</strong><br />
Saturday October 6, <strong>2012</strong><br />
Raley Field<br />
www.walktodefeatals.org<br />
5th Annual Run for a Cure<br />
Roseville, Sculpture Park<br />
Saturday, January 5, <strong>2012</strong><br />
For more information on special events or meetings call (916) 979-9265
Walk to Defeat Update<br />
Page 3<br />
<strong>The</strong> Walk to Defeat Website is up and we already have 35<br />
walkers registered. A special thank you to those team<br />
Captians that have already signed up:<br />
Brieanne Baumbach, Mitzi’s Miracle Makers<br />
Cindy Fuentes, Amelia’s Avengers<br />
Monica Garcia, Benny’s Angels<br />
Cherie Felsch, Cross/Novo/Moreno Fans<br />
Kathy Prado, Folsom Lake Toyota Care Team<br />
Judy Morgan, James “Tops” Morgan Team<br />
Ashley Coleman, Love you Gobbs<br />
Christa Emmons, Reach for the Stars<br />
Erin Sanchez, Team Grace<br />
Germaine Ramos, Team Olga<br />
Julie Hintz, Tom’s Team<br />
Whitney Toscano, Toscano<br />
Melissa Walden, Walking for Walden<br />
Goal: $225,000<br />
Raised to date: $7,555<br />
Participants: 54<br />
Helpful Web Sites<br />
Americans with Disabilities Act<br />
www.usdoj.gov<br />
<strong>The</strong> Joint Commissions on the Accreditation Healthcare<br />
Organizations<br />
www.jointcommission.org<br />
Paralyzed Veterans of America<br />
www.pva.org<br />
Medicare<br />
www.medicare.gov<br />
National <strong>Association</strong> of Area Agencies on Aging<br />
www.n4a.org<br />
U.S. House of Representatives<br />
www.house.gov<br />
U.S. Senate<br />
www.senate.gov<br />
Legislation Status<br />
thomas.loc.gov<br />
California Department of Veterans Affairs (CDVA)<br />
Tele: 800-952-5626 (toll free) Web: www.cdva.ca.gov<br />
Reno VA Medical Center<br />
SCI Telehealth Clinic Tele: 775-786-7200< ext. 1378<br />
VA Northern California<br />
Julie Moua, MSW, SCI/D Coordinator Tele: 916-843-9130<br />
Social Security Administration<br />
Tele:800-772-1213 (toll free) Web:www.ssa.gov<br />
Free App for the IPAD<br />
Developed by an <strong>ALS</strong> Patient. For more information<br />
please visit:<br />
www.verballyapp.com<br />
Forbes Norris Clinic<br />
Appointment Line: 415-600-3604
How To Be the Core Communicator About Your Health<br />
Page 4<br />
By Barbara Bronson Gray, RN, MN<br />
If you’re like many people, you see several health providers. In addition to a general<br />
practitioner, you may also have specialists, dentists, ophthalmologists, and even an<br />
emergency room doctor or urgent care provider. Unfortunately, you can’t assume one<br />
health provider knows what the other has done or prescribed for you.<br />
So you have to be the central communicator. Unfortunately, that role requires a fairly<br />
high level of knowledge about medicine and the ability to get written information from<br />
one specialist so you can send it to another.<br />
<strong>The</strong> more complicated your problems, the more fragmented your care will be. <strong>The</strong><br />
average Medicare patient sees two physicians and five specialists a year, (according<br />
to <strong>The</strong> Fragmentation of American Health Care: Cases and Solutions, edited by Einer Elhage). Those with a<br />
chronic illness see an average of 13 physicians a year.<br />
It's important you know that no one is picking up your medical records and automatically delivering them to the<br />
physicians in your life who should know what's happening with you. Consider yourself the person most responsible<br />
to collect written updates, copies of test results and lists of new and changed medications and get them to all your<br />
other healthcare providers.<br />
What should you do?<br />
<br />
<br />
<br />
<br />
<br />
When you get a test result, procedure or have surgery, get the summary in writing, keep a copy, and send or<br />
bring copies to all your other healthcare providers. Attach a simple note: "Wanted to keep you up to date on my<br />
health status. Please put this in my chart." If it's an important healthcare issue, be sure to bring up the data<br />
or problem at your next visit and mention that you sent a written summary for inclusion in your medical record.<br />
Keep a list of all your medications and update it any time a healthcare provider adds or deletes a drug or<br />
changes a dosage. Bring a copy of that list to your medical appointments and to the emergency room if you<br />
end up there. Keep the list with you when you travel.<br />
Don't leave your dentist or your optometrist/ophthalmologist out of the loop. <strong>The</strong>y need to know the details of<br />
your general health status. It will help them diagnose and treat any issues they may identify with you. Be sure<br />
they know you have <strong>ALS</strong>, and if you have any infections, immune issues, heart problems, chronic conditions or<br />
are taking blood thinners or antibiotics, as well as other medications.<br />
If you have a test or procedure and you do not hear the results soon afterwards, do not assume the results<br />
were normal. Call the healthcare provider who ordered the test and ask the office staff to email or send you a<br />
written copy of the test summary. Keep a copy in your own "medical updates" file. If the test was indeed OK,<br />
you still should have copy for reference at a later time, if needed.<br />
If you or someone you love ends up in the hospital, your role of communicator will be even more vital. Often<br />
multiple consulting physicians -- specialists -- are called by the admitting physician to weigh in on issues and<br />
questions that develop while you're in the hospital. <strong>The</strong>y don't always talk to each other or even realize who<br />
has changed or added a medication, who has ordered a test, or what results are in. <strong>The</strong> more you communicate<br />
the better. If you are being asked to go back for a test you already had or if you have questions about<br />
what is happening, don't assume someone at the "nurses' station" has it all managed. Ask questions and be<br />
sure you understand what tests you're getting and why. If you are being discharged from the hospital ask for<br />
the results of any tests or procedures you had in the hospital.<br />
<strong>The</strong>se recommendations may sound a little over-whelming. But it’s usually not so hard. Just remember: Get written<br />
copies of every test, procedure and surgery, keep a copy of each for yourself (you'll be the only person in the entire<br />
healthcare system with a complete copy of your own medical record), and give copies to your healthcare providers.<br />
Ask questions when you don't understand why someone wants to order a test for you. Bring a knowledgeable person<br />
along with you to healthcare appointments, if you like.
Advice from the Trenches<br />
PAGE 6<br />
Sandra Lesher Stuban is an RN who was a 38-year old Lieutenant Colonel in the Army<br />
when she was diagnosed with <strong>ALS</strong>. She’s the author of "<strong>The</strong> Butcher’s Daughter: <strong>The</strong><br />
Story of an Army Nurse with <strong>ALS</strong>," in which she describes her journey openly and honestly.<br />
Although she is completely paralyzed and uses a ventilator, she lives an active life<br />
as a writer and nursing leader.<br />
Q: I’ve had <strong>ALS</strong> for a couple of years now and am now facing significant mobility issues.<br />
I just realized summer is right around the corner, and so many of the things I always<br />
loved to do seem so hard now, even impossible. I realize that recreation and leisure<br />
don’t mean the same thing to me as they once did. Sometimes just going anywhere<br />
seems like more work than it’s worth. How do you deal with this? How can I look at leisure<br />
differently, with more interest, anticipation and enjoyment?<br />
A: This is probably one of the most difficult adjustments those of us with <strong>ALS</strong> must make. But it’s possible and<br />
necessary to enjoy your new life with <strong>ALS</strong>. Your idea of recreation and leisure activities may have been a round<br />
of golf, training for a marathon, a game of tennis or pickup basketball. You must now begin the transition from<br />
being an active sports participant to being involved and engaged mentally. You must change your emphasis<br />
from the physical to the mental.<br />
How do you do that? It requires a determination not to dwell on the frustration of losing an ability but rather looking<br />
ahead positively and figuring out what you can do about it. Accept the issue as you would accept a challenge<br />
to compete.<br />
Here are some ideas about how you can approach this:<br />
<br />
<br />
<br />
<br />
<br />
Invite your friends to join you in your home to watch your favorite team or sport on TV.<br />
Invite your friends to attend sporting events. All major league sports such as baseball, basketball, football,<br />
soccer and hockey have accessible venues. Wheelchair accessibility is not an issue.<br />
Play fantasy sports. This has become a very popular hobby with millions of Americans participating. Participants<br />
act as owners to build a team that competes against other fantasy owners based on statistics of<br />
individual actual professional players. Examples of fantasy sports include baseball, basketball, football,<br />
golf, hockey, auto racing, professional wrestling and surfing.<br />
Become an enthusiast for the Summer Olympics. With the Summer Olympics just around the corner (July<br />
27 to August 12), you can plan get-togethers to cheer our athletes to victory.<br />
Another form of leisure is as close as your computer. Discover online games. Yahoo Games<br />
http://games.yahoo.com/ is one website that offers a variety of choices including board games such as<br />
chess and checkers, card games such as blackjack and euchre, puzzles and word games. <strong>The</strong>re are<br />
also online Scrabble, Words with Friends, Angry Birds, and much, much more.<br />
If you would like to submit questions for a future Q & A, please send your questions to theexchange@alsanational.org.<br />
Please understand that we won’t be able to address all questions and we won’t be able to respond<br />
to individuals personally.
Research Update<br />
Page 6<br />
Drug Company Working Group Meeting Attracts Professionals from Academia and Industry to Discuss <strong>The</strong>rapeutic Opportunities<br />
for <strong>ALS</strong><br />
In April, at <strong>The</strong> American Academy of Neurology Annual Meeting in New Orleans, <strong>The</strong> <strong>ALS</strong> <strong>Association</strong> brought together an overflow<br />
crowd of researchers, industry executives, and many others, all with the common purpose of finding new treatments for <strong>ALS</strong>. <strong>The</strong> meeting<br />
of the <strong>ALS</strong> Drug Company Working Group organized by the Research and Public Policy Departments of <strong>The</strong> <strong>ALS</strong> <strong>Association</strong> was<br />
standing room only, an indication of the broad interest in the research and drug development world in developing treatments for the<br />
disease.<br />
“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<br />
share ideas and strategies for fighting <strong>ALS</strong>. That's what will help us move ahead,” said <strong>ALS</strong> <strong>Association</strong> Chief Scientist Lucie Bruijn, Ph.D.<br />
<strong>The</strong> latest news on the trial of antisense therapy against SOD1 was discussed by Frank Bennett, Ph.D., of Isis Pharmaceuticals, which is<br />
developing the drug for treatment of familial <strong>ALS</strong> due to SOD1 mutations. Final results of the trial were then presented the following<br />
day by Timothy Miller, M.D., Ph.D., of Washington University in Saint Louis. In this double-blind trial, antisense molecules that bind to<br />
SOD1 messenger RNA were injected into the spinal cord in 21 patients.<br />
<strong>The</strong> intent of the treatment is to shut down production of SOD1 and alter the progression of the disease in familial <strong>ALS</strong>. However, Dr.<br />
Bennett said that the trial was meant to establish safety, not test efficacy, and the drug was given only once, rather than multiple times<br />
over a prolonged period, as would likely be needed to have an effect on disease progression. Additional studies would be needed to<br />
determine the efficacy of this treatment.<br />
Drs. Bennett and Miller reported that the trial showed that single doses appeared to be safe with the most important side effects related<br />
to the delivery of the drug, not the activity of the drug once inside the spinal cord. Because it is delivered by lumbar puncture<br />
(injection into the intrathecal space surrounding the spinal cord), treatment is associated with an increased risk of headaches, nausea,<br />
and vomiting.<br />
Tests performed on patients showed that the drug achieved the predicted levels in the cerebrospinal cord and in the blood. “This was<br />
an important trial for studying the intrathecal delivery of antisense oligonucleotides,” Dr. Bennett said, as it was the first time that the<br />
procedure had been performed.<br />
Dr. Miller noted that the antisense molecule targets all types of mutations of SOD1, rather than being mutation-specific, which would<br />
increase its potential utility if it turns out to be effective. Some evidence suggests that normal SOD1 may be involved in sporadic <strong>ALS</strong>,<br />
and that lowering it may be therapeutic. If so, Dr. Bennett said, antisense therapy may be helpful. He also noted that antisense directed<br />
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<br />
absence of normal protein from the gene.<br />
Steve Han, M.D., Ph.D., of Massachusetts General Hospital in Boston, and the Department of Stem Cell and Regenerative Biology at<br />
Harvard University, discussed progress toward the development of <strong>ALS</strong> models using induced pluripotent stem cells (iPS cells) from patients<br />
with <strong>ALS</strong>.<br />
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,<br />
transformed into iPS cells, which multiply to make many millions of cells. <strong>The</strong>se cells can then be transformed into motor neurons. <strong>The</strong><br />
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<br />
caused the patient's <strong>ALS</strong>. <strong>The</strong>se cells can be used to learn more about what causes disease and to screen drugs as potential therapies.<br />
<strong>The</strong> lab has developed iPS cell lines with mutations in SOD1, TDP-43and FUS and has begun development of lines with C9ORF72 and the<br />
<strong>ALS</strong> risk factor ataxin-2.<br />
FUS (Fused in Sarcoma) is currently a major target of research in the lab. <strong>The</strong> FUS protein binds RNA, the messenger cells used to translate<br />
genes into proteins. It is normally found in the cell's nucleus, but the mutations that cause <strong>ALS</strong> relocate it to the cytoplasm in the<br />
cell's periphery. <strong>The</strong> more FUS is mislocalized, the earlier the disease begins and the more severe it is, Dr. Han said.<br />
Dr. Han is currently comparing cell lines from two different sources with different FUS mutations to understand more about how specific<br />
mutations affect neurons. One notable feature in FUS mutants is their effect on so-called stress granules. <strong>The</strong>se structures appear<br />
in cells in response to stress and are thought to be part of a protective response. In some FUS mutants, though, these granules, which<br />
are in the cytoplasm, appear to be adversely affected by the presence of FUS. Dr. Han is investigating the details of that effect, which<br />
may lead to better understanding of how the mutant causes disease in motor neurons. Continued on page 8.
A Father’s Day Tribute<br />
I have been sewing<br />
since I was 9 and<br />
started quilting in<br />
my late 20’s. When<br />
I saw all the wonderful<br />
team T-shirts<br />
at the Walk to Defeat<br />
<strong>ALS</strong>, I just<br />
knew I needed to<br />
make this quilt for<br />
the <strong>ALS</strong> <strong>Association</strong><br />
in memory of<br />
my dad, Herman<br />
Whittle.<br />
Dad enlisted in the<br />
Air Force and<br />
served during<br />
WWII, Korea, and<br />
Vietnam. We were<br />
in Japan in the late 50’s, settled in Vacaville, and then Mom and<br />
Dad retired in Woodland.<br />
Dad was handy with his hands, always fixing, building, or planting<br />
something. He could almost wave his hand over the car and fix<br />
whatever was broken. Weakness in his hands was the first sign of<br />
<strong>ALS</strong>. He was 76 when diagnosed and lost his battle 3 and 1/2<br />
years later. He kept a cheerful and inventive spirit to the end.<br />
<strong>The</strong> <strong>Sacramento</strong> <strong>ALS</strong> chapter was very helpful. All the meetings,<br />
speakers, and support were invaluable in dealing with the day to<br />
day effects of <strong>ALS</strong>. Herman was truly one of the good guys, a wonderful<br />
person, and the<br />
best dad! Our family<br />
wants to do what we<br />
can to erase this disease<br />
from the face of<br />
In honor of Herman Whittle (pictured here)<br />
Juanice continues to raise<br />
funds for <strong>The</strong> <strong>ALS</strong> <strong>Association</strong>,<br />
<strong>Greater</strong> <strong>Sacramento</strong><br />
Chapter by walking<br />
to defeat <strong>ALS</strong>.<br />
Her newest contribution is<br />
this beautiful hand made<br />
quilt that will be auctioned<br />
off at the associations 25th<br />
Anniversary “<strong>The</strong> Summer<br />
Soiree” on <strong>June</strong> 23rd.<br />
Thank you for all of your<br />
support, Juanice!<br />
A Prayer for My Father<br />
PAGE 7<br />
Dear Lord, I ask for your guidance<br />
As the path ahead is so unclear.<br />
As the reality settles in and our hope<br />
falters,<br />
I ask for you to fill our hearts with<br />
faith.<br />
Replace our fears with courage and<br />
strength<br />
So we may surrender to you and your<br />
mysteries.<br />
While <strong>ALS</strong> consumes my father’s body<br />
I pray that you will protect his spirit.<br />
When his legs can no longer carry him<br />
And his hands grow still,<br />
I pray your love will move him forward.<br />
When his voice falters and he can no<br />
longer speak,<br />
I pray your words will give him<br />
strength.<br />
And finally, when his time is near<br />
And his breath grows shallow,<br />
I ask for your mercy and compassion.<br />
Please embrace him completely,<br />
Encircle him with your truth,<br />
Comfort him and bring him to you.<br />
God, grant him peace.<br />
Written for William John Reuss (Bill)<br />
by his daughter Jackie Charonis<br />
March 21, <strong>2012</strong>
Research Update<br />
Page 8<br />
Continued from page 6.<br />
<strong>The</strong> <strong>ALS</strong> <strong>Association</strong> invited Steve Perrin, Ph.D., of the <strong>ALS</strong> <strong>The</strong>rapy Development Institute, to update the group on TDI's development<br />
of a therapeutic strategy targeting the body's immune system. <strong>The</strong>ir work in mouse models has identified an immune pathway<br />
that appears to overactivate a certain type of T cell (one major type of immune cell), which carries a receptor called CD40. This<br />
activation leads to inflammation, which is thought to contribute to the disease process in <strong>ALS</strong>. TDI has worked to develop an antibody<br />
that blocks CD40, preventing activation of the T cell and increasing survival in mice. <strong>The</strong> antibody itself doesn't get into the<br />
central nervous system but may exert part of its beneficial effect by preventing other immune cells, called macrophages, from<br />
crossing into the central nervous system where they may do damage.<br />
Currently efforts are underway to develop a human antibody against the CD40 ligand. However, TDI demonstrated that the same<br />
pathway can be intervened by using an oral drug called fingolimod, which may have benefit in <strong>ALS</strong> patients. This drug, trade name<br />
Gilenya, was recently approved by the Food and Drug Administration for the treatment of multiple sclerosis. TDI is in early stages<br />
of planning a trial to test this compound in <strong>ALS</strong>. <strong>The</strong>re are concerns about safety based on data from the use of the drug in multiple<br />
sclerosis. Dr. Perrin noted that the trial, which is still in the early planning stages, may require 24-hour monitoring of heart function<br />
to determine if treatment causes the heart irregularities seen in a small proportion of MS patients.<br />
Mark Boutin, Executive Vice-President and Chief Operating Officer of the National Health Council (NHC), discussed the MODDERN<br />
Cures Act (HR 3497), legislation endorsed by <strong>The</strong> <strong>ALS</strong> <strong>Association</strong> and introduced in Congress by Representative Leonard Lance (R-<br />
NJ). <strong>The</strong> bill would help accelerate the search for a treatment for <strong>ALS</strong> and other diseases by removing the barriers that limit medical<br />
innovation and by providing incentives to develop new treatments and diagnostic tools.<br />
He noted that despite increases in federal spending for medical research, the rate of new drug approvals has not increased.<br />
“Money is not the only barrier to development of new therapies,” Boutin said. As important are four barriers that inhibit the interest<br />
of pharmaceutical companies from taking risks in the development of new therapies. Addressing these barriers could rapidly<br />
change the development landscape.<br />
<strong>The</strong> first barrier, and the most important, is the problem of “intellectual property.” In the large majority of cases, it is difficult or<br />
impossible to obtain a patent on a potential therapy (this is true for all disorders, not just <strong>ALS</strong>). “We see this again and again,” said<br />
Boutin. Patents expire after a certain number of years, and the clock begins ticking not when the therapy is marketed, but at the<br />
beginning of a clinical trial development program.<br />
<strong>The</strong> development of a new drug, particularly for <strong>ALS</strong>, can take 15-20 years, reducing the potential return on investment; thus, many<br />
are not begun. <strong>The</strong> MODDERN Cures Act would create a new legal class of drugs called “dormant therapies,” which are those therapies<br />
that show promise in treating a disease with unmet medical needs, like <strong>ALS</strong>, but which have weak or no patent protection.<br />
Such dormant therapies would be afforded a period of “data exclusivity,” which offers incentives for development similar to those<br />
of patents. However, unlike patents, the period of data exclusivity would begin at the time of FDA approval so that manufacturers<br />
are not penalized for pursuing treatments for diseases like <strong>ALS</strong> that can take 15 or more years to develop.<br />
<strong>The</strong> other barriers relate to the ability to develop biomarkers and other diagnostic tools that can help speed treatment development<br />
by informing whether or not and in whom a drug may be effective much earlier in the development process. Even effective<br />
medicines work in an average of only 60% of patients because of genetic differences between individuals that affect response to<br />
the drug.<br />
“We have few effective tools to determine who a medicine will work for,” Boutin continued. Even when a diagnostic test is developed<br />
to determine differential response, it may take years to obtain the necessary medical coding from the government to allow<br />
reimbursement for the test. Nevertheless, the reimbursement is often too little to support the cost of the test. Regulatory and<br />
statutory changes included in MODDERN Cures could encourage development of such tests, speed the ability to obtain a reimbursement<br />
code, and better match reimbursement to costs. <strong>The</strong> National Health Council and <strong>The</strong> <strong>ALS</strong> <strong>Association</strong> are working with<br />
Congress, the FDA, the White House and industry to enact the legislation as soon as possible.<br />
“<strong>The</strong>se are the kinds of efforts that we need to move our search for new treatments forward,” Dr. Bruijn said. “That is what all of<br />
us are focused on.”
How You Can Help<br />
Retire with Meaning - Help Your Kids & Fight <strong>ALS</strong>, Too<br />
How you Can Help? PAGE 9<br />
Since you first started working, you’ve been regularly reminded of the importance of saving for retirement. Now you may<br />
find that your retirement savings are more than adequate. In addition, retirement assets are one of the most heavily<br />
taxed assets we own. Without proper planning, retirement assets may be subject to both estate and income taxes after<br />
you pass away.<br />
Donating all or part of a retirement plan to <strong>The</strong> <strong>ALS</strong> <strong>Association</strong> may be an attractive option. Since we are a charitable<br />
institution, we are exempt from paying the taxes that might otherwise be owed by your heirs and you will also receive an<br />
estate tax charitable deduction. This tax-wise move makes other assets you own available for loved ones. Making us the<br />
beneficiary of a retirement plan is so easy to do.<br />
Simply request a ‘Change of Beneficiary’ form from your advisor or the custodian of your account. Your plan administrator<br />
can send you a beneficiary designation form, which are often available online. <strong>The</strong> phone number and website of<br />
your plan administrator can found on your financial statement. Remember, you can name us as a partial beneficiary, the<br />
beneficiary of the entire amount or as a contingent beneficiary.<br />
Don't forget to incorporate the following legal description on the beneficiary designation: <strong>The</strong> <strong>Greater</strong><br />
<strong>Sacramento</strong> (Tax ID 68-0159292), with its principal office in <strong>Sacramento</strong>, CA.<br />
A Very Special Thanks to the Following Sponsors for their<br />
Support of the 25th Anniversary Summer Soiree!
In Memory of Our P<strong>ALS</strong> Page 10<br />
Janet Wilson<br />
Janet C. Wilson, 62, of Weaverville died at home May 16, <strong>2012</strong>, of <strong>ALS</strong>. She was<br />
surrounded by loved ones and went home to the Lord.<br />
She was born on <strong>June</strong> 4, 1949, in Tacoma, Wash., to Albert and Edna Roth. She and her<br />
family moved to Trinity County in 1981 from Eureka, Calif. She spent many years homesteading<br />
with her husband and children; an avid cook, and a friend to many. She had a<br />
knack for selling and her retail experience included such businesses as the Lace Corner,<br />
the Western Shop and Tops Market. She volunteered at HRN and was an active member<br />
of her church. She and her husband owned and operated the Trinity <strong>The</strong>atre for several<br />
years. Quilting, laughing, walking with her grandchildren and making pie or brownies were<br />
some of her favorite things.<br />
A loving mother and grandmother, and a generous friend, she will be greatly<br />
missed. She was diagnosed with <strong>ALS</strong> in <strong>June</strong> of 2009. Her last three years were an ongoing<br />
episode of tragedy and laughter as her illness progressed. Varying forms of ambulation,<br />
transportation and communication became the focus of living. Many of us will remember her speed-demon attitude<br />
while driving her power wheelchair sometimes into the ditch or off the sidewalk. Life was an ongoing adventure for<br />
Janet and she expressed that with courage and joy all the way to the end. Stubborn at times and adamant about her<br />
wishes, Janet was a shining light who touched many lives.<br />
She is survived by her husband, Greg Wilson of Weaverville; daughters Ronda and Ruth, both of Weaverville;<br />
grandchildren Travis Burns and Alya Grillo of Weaverville; brother, Walter Roth (Helga) of Hollister, Calif.; ex-son-in-law<br />
Foster Burns of Weaverville; and many friends.<br />
A memorial service will be held for her loved ones at a later date. In lieu of flowers or gifts, donations can be<br />
made to the <strong>ALS</strong> <strong>Association</strong>, <strong>Greater</strong> <strong>Sacramento</strong> Area, 2717 Cottage Way Suite 17, <strong>Sacramento</strong>, CA 95825 or go<br />
online www.alssac.org. Arrangements are being handled by Forrest Funeral Home, Weaverville.<br />
Robert Lee Vyvlecka<br />
Robert Lee Vyvlecka passed away at home surrounded by his family on Thursday, April<br />
19, <strong>2012</strong>, in Davis at the age of 81, after a long battle with <strong>ALS</strong>. He was born in Jourdanton,<br />
Texas, on Oct. 9, 1930, to Joseph and Adela Vyvlecka. He served in the U.S. Army during the<br />
Korean War (1951-53).<br />
Robert married Janet Havrda in Schulenburg, Texas, on April 27, 1957, and the couple<br />
moved to California where they enjoyed 55 years together. <strong>The</strong>y raised their five children in<br />
Davis. His favorite hobbies were drawing, painting, gardening, hiking, camping, woodworking,<br />
metal detecting and inventing things. He was a hard-working man, always providing for his<br />
family.<br />
Robert is survived by his wife, Janet Vyvlecka; sons Robert (Teresa) Vyvlecka of Woodland,<br />
James Vyvlecka of Colorado Springs, and Kenneth (Beth) Vyvlecka of Kearney, Neb.; and<br />
daughters Diane Medina (Lucas) of Cameron Park, and Carrie Schaefer of <strong>Sacramento</strong>.<br />
He was blessed with 21 grandchildren and 5 great-grandchildren.<br />
Robert is also survived by his brothers Joe and Frank Vyvlecka, and<br />
sisters Rose Marie Jaksik of Jourdanton, Texas, and Florence Polk of Fountain<br />
Hills, Ariz.<br />
In lieu of flowers donations can be made in his memory to the <strong>ALS</strong><br />
<strong>Association</strong>, <strong>Sacramento</strong> Chapter (www.alssac.org). Those who wish to sign a<br />
guestbook online may do so at www.wiscombefuneral.com.<br />
We extend our deepest sympathy and support<br />
to those families and friends who<br />
have recently lost their loved ones to <strong>ALS</strong>.<br />
In their honor we will continue our fight<br />
for a cure.<br />
Daniel Cole<br />
Vince Bezdecheck
Smooth Operators! VPD Rocking Beards for a Cause! PAGE 11<br />
Folsom-based Video Products Distributors,<br />
founded in 1980, is one of<br />
the nation’s original video distributors.<br />
<strong>The</strong> following article, which ran<br />
in the winter <strong>2012</strong> issue of VPD’s<br />
quarterly newsletter, Up Close, describes<br />
a fund-raising event staged to<br />
support the <strong>ALS</strong> Foundation and a<br />
long-tenured VPD employee who was<br />
recently diagnosed with the disease.<br />
Thornton<br />
Hair-raising? More than anyone dared anticipate. Still, when the scruff was scored, VPD’s<br />
beard-growing contest to raise money for the <strong>ALS</strong> Foundation netted a generous $600—<br />
monetary contributions from participants and a match from VPD. <strong>The</strong> idea, first hatched by<br />
Dave Skelton, and further incubated Bill Eilbacher, Levi Jones and Bill Southard to add the charity<br />
element, convinced many of VPD’s clean-shaven to lay down their razors and open their<br />
wallets. Some never made it past the stubble; others are still sporting it, and no one bested<br />
Matt Bailey’s facial carpet. And though not all of us were exactly whiskered away by what we<br />
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<br />
Page 12<br />
Look, up in the sky! It's a speck; it's a dot; it's getting bigger; it looks human-ish; it's<br />
two flying humans. Wow! It's a parachute, a brightly colored parachute, and it's<br />
beautifully and gracefully floating through the sky with two humans gripping on to<br />
their straps. <strong>The</strong>y're getting closer, and I can see... hey, that's my friend April in<br />
that tandem splendor!<br />
Cathy Speck—Post Jump with Sean<br />
Harrison, April 2010<br />
After my dear friend April landed safely with her instructor aka "jump master" at<br />
SkyDance Skydiving at the Yolo County Airport, she had a few things to say. When<br />
she caught her breath “At first, it's kind of a terrifying experience, but eventually<br />
you realize that it will all be okay.”<br />
Later, when April Kamen and I were hanging out on the ground waiting for others<br />
to jump, a handsome, well-dressed man holding a microphone approached me:<br />
"So, Cathy, tell me what's going on here today." I kind of heard what he said, but<br />
really my mind was goin' round and ‘round: who IS this guy? Wait, he's Richard<br />
Sharp the TV news reporter from KCRA channel 3! <strong>The</strong>n instead of speaking into<br />
his microphone, I spun around in circles, and yelped excitedly like our doggie Mazie<br />
does when we come home from work.<br />
Fortunately April jumped in and saved the moment on air by chiming in: "When people get the <strong>ALS</strong> diagnosis, it's like<br />
being shoved out of a plane, with no parachute, and they don't know what's going to happen to them," she said still<br />
gleaming.<br />
As co-producer of the event, I like to affirm that <strong>ALS</strong> Skydiving Specktacular has really taken off, just like a<br />
plane. “Everyone was invited to skydive or hang out, have a picnic and watch friends flying toward earth, but I emphasize<br />
that the purpose of this event is to raise awareness for <strong>ALS</strong> and raise money so that the Specktaculars can give a<br />
super big chunk of money to the Walk to Defeat <strong>ALS</strong>.<br />
"We are determined to raise $15,000 toward improving quality of life for P<strong>ALS</strong>, and finding a cure for <strong>ALS</strong>, most commonly<br />
called Lou Gehrig’s Disease says event co-producer Jae Templeton. <strong>The</strong> Specktaculars, a team composed of<br />
friends, family and co-workers of former Davis Food Co-op Safety Director, singer-songwriter and native Davisite Cathy<br />
Speck, will be walking for our cause at the October 6th <strong>Sacramento</strong> Walk to Defeat <strong>ALS</strong>.<br />
“In my opinion, any <strong>ALS</strong>SAC event is a unique opportunity to talk personally with <strong>ALS</strong> staff, people who have <strong>ALS</strong> and<br />
their families and friends”. <strong>The</strong> mission of <strong>ALS</strong>SAC (<strong>ALS</strong> <strong>Association</strong>, <strong>Sacramento</strong> Area Chapter) is to empower people<br />
with <strong>ALS</strong> and their families to live fuller lives by providing them with compassionate care and support, and to lead the<br />
fight to cure and treat <strong>ALS</strong> through global, cutting-edge research. I declare truthfully, and often, that <strong>ALS</strong>SAC has<br />
saved my life. Well, you know, I'm going to die of <strong>ALS</strong>, but I'm not done yet, and <strong>ALS</strong>SAC keeps me going."<br />
Here is a link to the KCRA video on Yahoo! http://news.yahoo.com/<br />
video/sacramentokcra-28855299/skydivers-fill-skies-for-a-l-s-<br />
29357288.html<br />
Sac Bee News:<br />
http://www.sacbee.com/<strong>2012</strong>/05/22/4506864/supporters-takeleap-of-faith.html<br />
Here is a link to the <strong>Sacramento</strong> Bee's photo essay:<br />
http://www.sacbee.com/<strong>2012</strong>/05/20/4504039/als-skydivingspecktacular.html?mi_rss=Photo%20Galleries<br />
Cathy Speck, Linda Duval and Robin Terra:<br />
enjoying the shade and view of skydivers!
Lessons (horseback, tennis, golf, ski, etc.)<br />
Wine packages<br />
Jewelry<br />
Sports tickets/package or jersey<br />
Electronics/gadgets<br />
Concert/theatre tickets<br />
Sporting equipment<br />
Spa/beauty packages<br />
Bath/body products<br />
Rounds of golf at local country clubs/courses<br />
Dinner party<br />
Private plane ride/trip<br />
Digital camera/accessories<br />
Unique home/garden items<br />
Summer Soiree “Wish List”<br />
Looking for ways to help <strong>The</strong><br />
<strong>ALS</strong> <strong>Association</strong> raise funds?<br />
Consider making a donation tour<br />
Star/<strong>ALS</strong>A Walk of Fame Raffle<br />
or our Live Auction being held on<br />
Saturday, <strong>June</strong> 23rd and you’ll<br />
help us find a cure for <strong>ALS</strong>.<br />
<strong>The</strong>med basket ideas: Holiday, Relaxation, Chocolate/Gourmet treats,<br />
Coffee or tea, Bath & Body, Movie Night/Family game night, Music, Travel<br />
activities for kids, Tailgate, BBQ, Picnic, Gardening, Pool party, Romance.<br />
Call Amy Sugimoto at the<br />
Chapter office ( 916) 979-<br />
9265. for more information<br />
or to make a donation.<br />
Live/Super Silent Ideas! unique “can’t-be-bought-in-stores” items<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
Auto show tickets/night out<br />
Caribbean vacation<br />
Ladies getaway to Chicago, NYC or Las Vegas – (spa, shopping, gourmet restaurant, etc.)<br />
Kentucky Derby package<br />
Pebble Beach golf trip<br />
Car lease<br />
Use of a suite/box seats – sports or concerts/events<br />
Pig roast/hay ride party<br />
San Francisco/Napa Valley weekend<br />
Golf package exclusive<br />
Los Angeles/Hollywood – movie/TV set trip<br />
Oprah tickets/Chicago trip<br />
Golf/poker/cigars day for the guys<br />
Multi-family cookout & activity<br />
Paris trip<br />
American Girl Chicago or NYC trip<br />
Grand Canyon or Yellowstone package<br />
Autographed sports memorabilia or jerseys<br />
Use of a vacation home/timeshare<br />
Airfare<br />
Volunteers<br />
Needed!<br />
Have you ever<br />
wanted to volunteer<br />
for a special event?<br />
If so, we have a<br />
great opportunity for<br />
you to show your<br />
support of <strong>The</strong> <strong>ALS</strong> <strong>Association</strong>, <strong>Greater</strong> <strong>Sacramento</strong><br />
Chapter.<br />
We need volunteers for set up, clean up,<br />
auction, and serving food and drinks. For<br />
more information please contact Alycia Cahill<br />
at 916-979-9265
Thank you to our May Donors! You make our programs and services possible.<br />
Mitzi Aguirre<br />
Tom and Betty Akashi<br />
Ruth Alves<br />
Ceci Ambriz<br />
Courtney Austin<br />
Frances Avrin<br />
Ann Bardy<br />
Judith Barmack<br />
Matthew Barmack<br />
Laurie Bartlett<br />
Bill Barton<br />
Kevin Broadbent<br />
Tom Brown<br />
Linda Butler<br />
California's Great America<br />
Judy & John Callahan<br />
Jackie Camey<br />
Ruth Causey<br />
Jacqueline Charonis<br />
Kristopher Chiles<br />
Pamela Circo<br />
Ashley Coleman<br />
Mark Coleman<br />
Crocker Art Museum<br />
Crossfit Gold<br />
Dad's Kitchen<br />
Margaret Dillard<br />
Disneyland Resort Community<br />
Relations<br />
Elk Grove High School Photo Club<br />
Beata Elliot<br />
Rancho Cordova Emblem Club<br />
Charles Fisher<br />
Bruce Fisher<br />
Gino Galli<br />
Gatsby's Diner<br />
Otto Glaubitz<br />
Alexandra Gonzalez<br />
Brian Grassadonia<br />
Jeff Hancock<br />
Linda Hays<br />
Juanice Hess<br />
Heather Hill<br />
Michael Hodge<br />
Beryl Holms<br />
Kenneth Humphreys<br />
Jamie's Bar & Grill<br />
Thomas Johnson<br />
Ruben Jordan<br />
Sharon Juang<br />
Pat Kemper<br />
Blythe Klipple<br />
Charlotte Lawrence<br />
Alan Lefko<br />
Steven Lovotti<br />
Lynn Greene Photography<br />
Nancy Mah<br />
Laura Martinez<br />
Janet Martin-McCoey<br />
Janet Milburn<br />
Cynthia Milford<br />
Judy Morgan<br />
Raymond Narducy<br />
NCAA<br />
Chris Nelson<br />
Sandy Nelson<br />
Samantha Nelson<br />
Norma Nicholson<br />
Dan Nishio<br />
Denyse Nishio<br />
Garrett Nishio<br />
Marilyn Nishio<br />
Ross Nishio<br />
Sandora Nishio<br />
Jodi Nygaard<br />
Shirley Olney<br />
Paragary Resturant Group<br />
Gerry Pasquetti<br />
Permobil<br />
Frances Petrocelli<br />
Doug & Linda Pinkham<br />
Jennifer Porter<br />
Donald Porter<br />
Premier Medical Supply Inc<br />
Lucille Ratermann<br />
Emily Reid<br />
Donald Ricci<br />
Pam Richardson<br />
Shawn Roessler<br />
Paul Rosenstiel<br />
<strong>Sacramento</strong> Zoological Society<br />
Safeway Inc.<br />
Salsa Fresca Mexican Restaurant<br />
Kathleen Sanders<br />
Arlene Sandoval<br />
Cindy Schlenz<br />
Ross Schmiedt<br />
Steven Scott<br />
Scott Bie & Associates, LLC<br />
Barbara Seley<br />
Anthony Sertich<br />
Carolyn Shadinger Jr.<br />
Autumn Sharp<br />
Jennifer Sherman<br />
Diana Siefkes<br />
Adam Simowitz-Price<br />
Skylar Skikos<br />
Ron Smith<br />
St. James Womens Guild<br />
Minna Tao<br />
<strong>The</strong> Cheesecake Factory<br />
<strong>The</strong> Squeeze Inn<br />
Ron Thompson<br />
Ronald Thompson<br />
Ed & Ludmila Trautt<br />
Akemi Turner<br />
Amanda Ursini<br />
V.P.D. IV Inc.<br />
Karen Van Skike<br />
Sharon Vargas<br />
Jennifer Walden<br />
Huey Chen Wang<br />
Kathryn Webb<br />
Gail Weller<br />
Richard Whitehouse<br />
Daniel Wood<br />
Rumi Yokota<br />
Michael Yolken<br />
Rich Zogaric<br />
Your Help Counts!<br />
Our patients, caregivers<br />
and office staff<br />
need help with a variety<br />
of projects from<br />
office tasks and data<br />
entry to picking up<br />
and dropping off<br />
equipment to patients.<br />
<strong>The</strong> office is open<br />
daily from 9 am to 5<br />
pm. Not all of the<br />
tasks are glamorous,<br />
but it doesn’t take<br />
much to make a big<br />
impact in the lives of<br />
others. If you have a<br />
couple of spare hours<br />
and would like to get<br />
involved please call<br />
Alycia Cahill at 916-<br />
979-9265.<br />
VOLUNTEER TODAY!<br />
A very special<br />
thanks to everyone<br />
that contributed<br />
to our<br />
Durable Medical<br />
Equipment<br />
Program in<br />
May.<br />
Jim McCrown<br />
Gail Cordeiro<br />
Bonnie Jose<br />
Marilyn Dray<br />
Deanna Boyles<br />
Janet Vyvlecka<br />
Tamera Preston