January 2012 - The ALS Association Greater Sacramento

Thank The ALS you Association, to Larrie Greater & Diane Sacramento Grenz! Chapter TheSummer Soiree Newsletter was a hit!Patients • Caregivers • Families • DonorsProudly serving 24 counties in Northern Californiafrom the Sierras to the Oregon Border2717 Cottage Way, Suite 17Sacramento, CA 95825Phone (916) 979-9265Fax (916) 979-9271www.alssac.orgJanuary 2012Support GroupsEventsUpcomingSpecial Events22Lend a Hand 3Ask the Doc 4Public Policy 5Research 6Resources 7Faith, Family &Hope by LoisKawata8,9Not just any Car 10Dear Friends:Thank you for all of your support over the last year.Our Chapter continues to thrive as a result of yourcommitment to helping those impacted with ALS live afuller life.This January brings us one step closer to an effectivetreatment of ALS because of your diligent efforts thispast year. Did you know that more ALS research advancementshave been made in the last three yearsthan in the last hundred?This is not only cause for optimism, but a time to cometogether and fight for increased funding to supportthis momentum. Our goal of finding a cure for ALS isonly a reality if we work together!As we kick off the new year our Chapter will be celebratingits 25th Anniversary of providing comprehensiveprograms and services to those impacted by ALS. We will be honoring patients, caregiversand donors in every issue of our newsletter, as well as hosting events and creating opportunitiesfor you to get involved and partner with us on our quest for a cure.If you’re interested in volunteering, sponsoring or hosting an event, or would like a presentationin your workplace—please call Amy Sugimoto at 916-979-9265 or email at asugimoto@alssac.org.Sincerely,AmyP.S. Save the date for the Summer Soiree 25th Anniversary Celebration on Saturday, June 23rd atthe Library Galleria. Tickets are $50 each and sponsorship opportunities are available.———————————————————————————————————————————--REMINDER! Make your $10 donation through your California Tax returnand support The ALS/Lou Gehrig Research Fund.Clip me and save in your tax file.Run for a Cure 12Thank you’s 13

Support Group Meetings and Special EventsPage 2SACRAMENTO (Dow ntown)Sutter Cancer Center2800 L St reetSacramento, CA 95816Saturday, January 21Saturday, February 18Saturday, March 1710:30—12:30 pmSnacks & Beverages are providedat no cost.PALS & CALS(Breakout Session)Parking: Patients can be droppedoff at the front of Sutter CancerCenter near the valet.If you are in need of financial assistancefor parking, please let usknow—reimbursements are availablefor PALS and CALS.SACRAMENTO (Fulton Ave)Carlton Plaza1071 Fulton AvenueSacramento, CA 95825Thursday, January 12Thursday, February 9Thursday, March 8Noon-2 pmPALS & CALS(Combined Session)Snacks and Beverages areprovided at no cost.REDDING—PLEASE NOTEADDRESS CHANGE FORREDDING SUPPORTGROUP.Shasta Region al MedicalCenter1100 Butte St.Reddin g, CA 96001Thursday, January 26Thursday, February 23Thursday, March 22Noon-2 pmPALS & CALS(Combined Session)Pizza lunch and beverageswill be provided.Call 916-979-9265 for moreinformation.STOCKTONPlymouth Square1319 North Madison Street6th Floor Conference RoomStockton, CA 95207Thursday, January 5Thursday, February 2Thursday, March 110 am-NoonPALS & CALS(Combined Session)Snacks and Beverages areprovided at no cost.UPCOMING EVENTS: Saturday, January 7th4th AnnualLou Gehrig Roseville 5K/10KRun/Walk 9 amSculpture Park, RosevilleRegistration starts at 7 amFree Kid’s Fun Run at 8:30 am$30 in advance$35 same day registrationSaturday, February 3rdPack the House Game—Sacramento State UniversityCall the Chapter for more details.Saturday, February 11th2nd Annual Crab Feed to benefitThe Forbes Norris MDA/ALSResearch Center—Scottish RiteMasonic Center, Stockton, CA$40 donation.For more information call CathyDrake (209) 471-029625th Anniversary Soiree &Dinner & AuctionSaturday, June 23, 20126-11 pm/ $50 ticketThe Galleria, Sacramento, CASpring Fashion Show—moreinformation to comeFor more information on local services and programs for ALS patients and Caregivers please call 916-979-9265 orvisit www.alssac.orgNancy Wakefield: Patient Care Manager.

Lend a HandPage 3Your HelpCounts!Our patients,caregivers andoffice staffneed help witha variety ofprojects fromoffice tasks and data entry to pickingup and dropping off equipment topatients.The office is open daily from 9 am to5 pm. Not all of the tasks are glamorous,but it doesn’t take much tomake a big impact in the lives of others.If you have a couple of sparehours and would like to get involvedplease call Alycia Cahill at 916-979-9265.Our Leadership Team:Scott Ehlen, President, American GreetingsBeth Hassett, Vice President, WEAVE (Women Escaping a Violent Environment )Cherie Felsch, Secretary, UC Davis School of Veterinary MedicineDianne Jared, Sacramento Theatre and LightingLinda Hays, Sierra Property ManagementSteve Pereira, Owner, ADL (Aids for Daily Living)Sandie Ferguson, Neurology / Sutter Neuroscience InstituteDr. Bjorn Oskarsson, UC Davis Department of NeurologyMary Odbert, Consultant, MCO AssociatesBob Osborne, R.N, Forbes Norris Center of ExcellenceStaff:Amy Sugimoto, Executive DirectorNancy Wakefield, Patient Care ManagerAlycia Cahill, Office AdministratorSAVE THE DATE!25th Anniversary Summer SoireeDinner, Dancing & AuctionSaturday, June 23, 20126-11 pm/ $50 ticketThe Library Galleria, Sacramento, CATo reserve your ticket call Alycia Cahill at916-979-9265.Sponsorship Opportunities available bycalling Amy Sugimoto or emailasugimoto@alssac.org.2012100% of our Chapter programs and services are provided free of cost to patients and caregivers. Your support of ourChapter directly impacts the lives of those battling ALS. Thank you for all you do to make the battle easier!

Ask the Doc Q & A with Edward Kasarskis, MD, PhDPage 4Edward Kasarskis, M.D., Ph.D. is Director of the multidisciplinary ALS Center at theUniversity of Kentucky Neuroscience Center in Lexington, Kentucky, professor in theDepartment of Neurology at the University of Kentucky, and Chief of Neurology at theVA Medical Center in Lexington KY.Q: What is your opinion of Rilutek? My husband was diagnosed with ALS three monthsago. We’ve talked to two ALS specialists; one doesn’t endorse the drug and one does. Myhusband just started taking it, but we aren’t sure it will help him. -- Andrea, New York CityDr. KasarskisA: Good question. It’s true that, as you have experienced, ALS experts disagree about its relative value. Basically,this is viewing the glass as either half-full or half-empty. Riluzole (Rilutek®) is frustrating because it’s not a perfectdrug, and does not stop ALS in its tracks. But, in short, I recommend it. I am in the half-full camp. The evidencebasedguidelines for the treatment of ALS developed by the American Academy of Neurology (AAN) conclude thatriluzole is safe and effective for slowing disease progression and should be offered to patients.When we look at the original studies from the 1990’s to get FDA approval for the drug and subsequent studiessince then, it appears that the advantages of taking riluzole are consistent. The package insert, which is alwaysconservative, says the drug provides a three month survival advantage -- meaning you are likely to live three moremonths than if you didn’t take the drug. But several studies done in the last few years indicate that the survivaladvantage of taking riluzole may actually be greater. It also seems that beginning the drug as soon after diagnosisas possible may offer advantages.In addition to the modest extension of lifespan riluzole can offer, some people swear it makes them actually feelbetter. Some say they experience more restful sleep and others feel it controls fasciculations. We estimate thatabout 50% to 75% of people with ALS are taking riluzole.There are a few downsides to the drug for some individuals. Some just can’t tolerate it; they feel tired and rundown. Of course, it’s hard to know if those symptoms are side effects of riluzole or simply part of what peoplewith ALS often experience. Sometimes people who are older seem more prone to these side effects than are others.It’s important to monitor liver function enzymes for the first few months (your family doctor can easily do this),but there is usually no permanent liver damage. And I recommend people start with an initial dose of just 50 mg aday, and then after a week take 50 mg twice a day. Studies that have looked at what dose is ideal have found that100 mg is better than is 50 mg, but upping the dose to 200 mg conferred no additional benefit.And riluzole is expensive. Without insurance or third-party coverage, the out-of-pocket cost can be about $1,200 amonth. With coverage, co-pays tend to range from $20 to $200 a month. Medicare and the VA cover it, and theNational Organization for Rare Diseases can help support the cost for the indigent.No single drug or treatment should be viewed in isolation when dealing with ALS. The best bet is to tackle the diseasewith a comprehensive approach, including nutrition, respiratory therapy and support, physical therapy, occupationaltherapy, social support, and, yes, riluzole.If you would like to submit questions for a future Q & A, please send your questions to Amber Walters at awalters@alsa-national.org.Please understand that we won’t be able to address all questions and we won’t be able torespond to individuals personally.

ResearchPage 6Open Enrollment Announced for Cytokenetics CK-2017357 ALS Drug TrialCytokinetics, Incorporated, manufacturer of the FDA-designated orphan drug CK-2017357, recently announced that ithas opened enrollment in a third Phase II clinical trial for people with ALS. The primary objective of this phase of theclinical trial is to evaluate the safety and tolerability of CK-2017357. A secondary goal of the trial is to evaluate theALSFRS-R, other measures of pulmonary function, muscle strength and fatigue, relationships between dose, plasmaconcentrations and functional effects, and physician and patient global assessments in the participants.This clinical trial is a double-blind, placebo-controlled, ascending dose study to evaluate the safety, tolerability, andpharmacological effects of multiple ascending doses of CK- 2017357. At this time, an estimated 24 patients with ALSwho are also receiving the drug riluzole are scheduled to be enrolled at approximately 10 study centers in the UnitedStates. The trial’s participants will be randomized to one of two dosing groups and receive twice daily doses of CK-2017357 or a placebo. Clinical assessments will occur at pre-determined times during the course of the treatment, andparticipants will also take part in follow-up evaluations one week after receiving their final dosage.For information about enrollment, go to www.clinicaltrials.gov. Click on "Search for Clinical Trials" and enter "CK-2017357 and ALS." After clicking on the title of the clinical trial and scrolling down to the "Contacts and Locations" section,you will see the names of the sites participating in the trial. If one is convenient for you and is indicated as"Recruiting," you may contact that site directly or email jmasonek@cytokinetics.com for additional information.In addition, Jeremy M. Shefner, M.D., Ph.D. made a presentation on CK-2017357 at the 22nd International Symposiumon ALS/MND in Sydney, Australia. Results showed those in the trial tolerated the daily dosages of CK-2017357 withminimal side effects. Some recipients experienced mild dizziness during the initial phase of the treatment, but the dizzinessappeared to cease as dosing continued during the two-week treatment period.New Issue of Research ALS Today AvailableThe Fall 2011 issue of Research ALS Today is now available. Published twice a year, Spring and Fall, the magazineprovides articles and information about current ALS research and activities of The ALS Association. Manyof the articles are written by investigators, who are making progress in the search to answer important questionsabout amyotrophic lateral sclerosis. Research ALS Today is edited by ALS Association Chief ScientistLucie Bruijn, Ph.D., a former ALS research investigator who remains focused on the cutting edge of ALS research.This issue highlights resources and journal news and features the following topics:TREAT ALS Research PortfolioRNA ProcessingCall for Research AbstractsSafenowitz Post-Doctoral FellowshipsStrike Out ALS Wristbands are NOW IN STOCK!!After many requests the office now has “Strike Out ALS” wristbands in bothadult and children’s sizes. If you would like to order your “Strike Out ALS”wristbands for $1 each plus shipping costs please call Alycia at (916) 979-9265.For more information on ALS research please visit our website at www.alssac.org

ResourcesHelpful Web SitesAmericans with Disabilities Actwww.usdoj.govThe Joint Commissions on the Accreditation HealthcareOrganizationswww.jointcommission.orgParalyzed Veterans of Americawww.pva.orgMedicarewww.medicare.govNational Association of Area Agencies on Agingwww.n4a.orgU.S. House of Representativeswww.house.govU.S. Senatewww.senate.govLegislation Statusthomas.loc.govCalifornia Department of Veterans Affairs (CDVA)Tele: 800-952-5626 (toll free) Web: www.cdva.ca.govReno VA Medical CenterSCI Telehealth Clinic Tele: 775-786-7200 ext. 1378VA Northern CaliforniaJulie Moua, MSW, SCI/D Coordinator Tele: 916-843-9130Social Security AdministrationTele:800-772-1213 (toll free) Web:www.ssa.govFree App for the IPADDeveloped by an ALS Patient. For more information pleasevisit:www.verballyapp.comIn Memoriam:Page 7Need specialized utensils tohelpClick on the link below for more information.with eating?Good Grips makes easy to use, inexpensive utensils.http://www.activeforever.com/search.aspx?searchterm=oxo&cm_mmc=g-_-kitchen%20aids-_-oxo%20good%20grips-_-good%20grips%20utensils&gclid=CPymqdrepa0CFQVvhwod_0WqlAAdaptive Clothing for Men and WomenClick here for more information:http://www.silverts.com/als-clothing/Breath a Little EasierHill-Rom companies manufacture anddistribute The Vest® Airway ClearanceSystem, a medical device that assistschildren and adults with mobilizingsecretions that may contribute to, orcomplicate, their respiratory conditions.If not removed, retained secretionsmay lead to increased rates ofrespiratory infections, hospitalizations,and reduced lung function.Learn more about the Vest by clicking here:http://www.thevest.com/patients/We extend our deepest sympathy and support to thosefamilies and friends who have recently lost their lovedones to ALS. Please contact us for support if we canhelp you with the grieving process.Our PALS:Gary WatkinsJohn OsterlundFrancisco BaltazarRick CordeiroJohn AllenLove, The ALS Association, Greater Sacramento ChapterDid you know that ALS Support Group Meetings offer practical solutions to improve the livesof PALS? Now you do!

How a car donation helped to fund the Chapter programs and services PAGE 10Not Just Any CarBy Julie (Pope) HintzEach family has their own traditions, heirlooms, customs and tales to passdown from generation to generation. A piece of jewelry, furniture, a treasuredChristmas trinket, photo albums, important documents, coin collectionsor even the family home, they’re all things that may hold some sentimentalvalue. We hold on to things that belonged to generations beforeus in an attempt to feel close to our family members. Usually those heirloomsbring with them memories. Memories capture special moments,feelings, a cherished time with a loved one, or even laughter at the thought of an inside joke. For my family, one ofthose prized possessions was a car, but not just any car.The year was 1969, and my Granddaddy purchased a brand new Buick Electra 225. It was decked out with whitewalltires, air conditioning, power windows and locks, and had a custom vinyl roof. This 2 door sport coupe had an antiquegold paint job, it was a beauty. This would be the last car my Granddaddy ever bought; he passed away just two yearslater. My dad inherited the Buick, and drove it across country from Virginia to California in 1973.The tradition begins. My parents were married in November of 1977. After a fun wedding, my mom and dad headedoff to begin their lives together, driving away in the Buick. For years, the Buick was my mom’s primary vehicle. InJune of 1980, the proud mommy and daddy took their new baby girl home from thehospital,driving away in the Buick. Years passed, and after a while, the Buick was no longerdriven. Instead, it was kept in storage. My dad held on to it, though. Those sentimentalreasons of a token carrying with it memories, I guess. Fast forward 22 years,and that baby girl is a college graduate and is beginning to plan a wedding. My dadbarely got the words out, and my own sentimental tendencies lit up (it must be aPope family trait). He wanted to restore the Buick for my future husband and meto use as our wedding car. Of course, he embellished with the story of he and mymom using it at their wedding and it being used to bring me home from the hospital.Being a veteran auto upholsterer, and an avid car lover having restored cars forpleasure and profit, this was more like a hobby than a job for my dad. He was happy to do it, and I’msure it brought him great joy to see that old ’69 Buick brought back to life. So, in June of 2003, my husband and I weremarried, and we were ready to start our new life as husband and wife, driving away in the Buick. Time has a funnyway of ticking on by, and before we knew it, my husband and I were expecting our first baby. I was eager at thethought of bringing our little one home from the hospital in the Buick, being able to continue this tradition. Then, inNovember of 2007, the very excited mommy and daddy took their new baby boy home, driving away in the Buick.It wasn’t long after our son was born that my dad was diagnosed with ALS. The Buick had once again been parked andcovered, not used much. My dad tried his best to downsize things that he could no longer use, that weren’t necessaryfor my mom to keep, and the Buick was one of those things. I pushed to keep the car because I knew I had planned tohave at least one more child, and the thought of such a special family tradition being cut off before its time hurt myheart. So, my dad’s motorcycle went, as did all of his auto upholstery tools and sewing machine, but the Buick stayed.In August of 2009, my dad, with all his dignity and grace, passed away. He was made perfect in heaven, but our heartswere crushed here on earth. Grasping at material things in hopes of feeling my dad near, I took hold of all I could; evensomething as simple as an old flannel shirt at times. The memories, though, are what made me feel closest to him.The three messages left on my answering machine with his voice telling me he loved me, wishing me happy birthday,and even the almost inaudible mumblings from the night before he passed. The way he’d made me feel when hecalled me ‘Punky Doodle’. The fun we had with our special Christmas Eve tradition, just him and me. These memoriesmean more than things. But, that Buick, it was not just any car.To donate a car in honor of your loved one, please call Alycia Cahill at 916-979-9265

Not Just any Car—continuedPAGE 11Then, less than a year after my dad passed, in July of 2010, we were once again welcominga little baby into our lives. Just like the last piece of a puzzle, the overjoyedmommy and daddy and new big brother were bringing their baby girl home from thehospital, driving away in the Buick. I could breathe a sigh of relief. I knew this familytradition had made it full circle. It would be a treasured story to share with myson and daughter as they got older, to show them pictures of weddings and babiesand having the Buick in the background. The Buick is a ‘thing’, yes, but it carried withit precious memories; memories of new life, birth, beginnings. No, this 1969 BuickElectra 225 was not just any car.Time takes its toll on things, and in our case, it was the Buick. We weren’t able to storethe car the way it should have been, and it needed attention that we were unable to giveit. The decision was made that we should sell it, and we tried. We had a few interestedparties, one who lived too close and we feared seeing it belong to another, one who wasscared off by the job of completing the restoration, and one who was related by my husband’sfamily. None of these options really worked for us. My mom and I weren’t excitedabout knowing or living close to the buyers because we didn’t want to think aboutseeing it mistreated or changed. So, after reading in the ALS Association, SacramentoChapter newsletter one month that they partnered with a car donation company, wedecided this was the best route to take. This way, we were giving to a cause near anddear to our hearts in my dad’s memory and honor, and we’d be rid of the Buick in a muchcleaner way, emotionally speaking. My mom made the call the first week of October2011, and before we had time to process it, they called back ready to pick up the car thenext day. We were excited, but a little overwhelmed at how quick it was happening. Afterall, our Buick is not just any car to us. This was a piece of my dad we had with us, parked out in front of the house;a physical reminder of a family tradition with special memories.So, there was my mom, my son, my daughter, and I standing out on the driveway when the big tow truck pulled up. Ofcourse, my son thought this was cool, a tow truck out in front of his house, loud diesel engine, air breaks, the works.My mom and I however, both had a knot in our stomachs. We were concerned becausethere was already a car on the bed of the tow truck, and the Buick is l-o-n-g. It would nothave been a pretty sight to watch it towed off the back of the truck. The tow truck driverstepped out and then did a double take when he realized he was taking away a classic car.He walked all around the car, he checked out the body, the interior; he even opened thehood to take a look at the engine. He was impressed with the Buick, and that made mymom and I feel quite proud. He was so respectful, he took his time, and he listened as mymom shared with him the family traditions tied to the Buick. He unloaded the first carfrom the bed of the truck so that he could load up the Buick and tow the smaller car off theback. My mom and I were relieved. We watched as the truck carefully rounded the court,and passed back by our house. We watched, with tears in our eyes, as the Buick turnedthe corner and was gone. We were sad because that little piece of something to hold on towas gone, but we were happy to know we were making my dad proud by donating it tosuch a wonderful organization. The Buick is gone, but it was not just any car, it was a carfull of memories, and we have those in our hearts forever.For my Daddy, with lots of love!Your Punky DoodleTom Pope, PALS 1943-2009

Run for a Cure4 th Annual 5K & 10KRun for a CurePage 12Saturday, January 7thSculpture Park336 North Sunrise Blvd/ Roseville, CAOnsite Registration—7 am • 5K/10K Run/Walk— 9 amHalf Mile Kid’s Fun Run—8:30 amAge Divisions:12 and under, 13-15, 16-19, 20-29, 30-39, 40-49, 50-59, 60-69, 70+Awards:Overall Female/ Male and Top Two Division WinnersAll Kid’s Fun Run ParticipantsRegistration Fees:$30 Pre-registration$35 Same Day RegistrationKid’s Fun Run – FreePacket Pick-up for Pre-Reg Runners/Walkers Last Opportunity to Pre-Register:Roseville Fleet Feet – 1850 Douglas Blvd.Thursday, January 5th 4:30 – 8:00pmFriday, January 6th 4:30 – 8:00pmSaturday, January 7th (onsite registration $35 starts at 7am)Register online here.Walkers are welcome to join us too!For more info: www.alssac.org ● (916) 979-9265Strike-Out Lou Gehrig’s Disease!

Thank you to our November Donors! You make our programs and services possible.Rey AlicabaRand AllisonRuth AlvesAssociation Of California Water AgenciesRobert BardyLela BayleyLinda BeltonMona BendixRobert BlankenshipAmy BoyerJulie BrownPamela CircoNeil CulpElmo DaleyDawn DegeestLorrain DiaconCarolyn DoggettGlenn DoughertyDoretta EllisFrank A. Campini FoundationMarie GalustianGive With Liberty Employee DonationsPatricia HeeschMicheal HodgeThomas HughesJohn HughesLinda HunterSheila IgoeBrian JaredLeonard JohnsonCharles JohnsonJudy JohnsonKathy KalinowskyAlexander KamKimberly KeenerPat KemperKathy KenneyKindred SistersTed KostyshakSteven LovottiPatricia LowerJanet Martin-MccoeyBrad MaxonErin McbrideJames McmillinTracy MisfeltHenry MunozBev NeasbittNorma NicholsonWilliam PetersonPhi Delta ThetaDavid PittsVicki PopeJames PrestonRichard PrestonCamen RanjelArlene SandovalCindy SchlenzJoseph SchoennauerMargaret SentousTim ShannahanCathy SpeckGemma StandfordDiane SwoffordFred SzchciukMary ThompsonKelly TrailCharles TroglioV.P.D. Iv Inc.Washington Outboard ClubRon WatkinsMelinda WelshPatricia WhiteRebecca Woern