MOVING TOWARD A WORLD FREE OF MS Volume 3• Issue 1
Northern California Chapter
2007 Annual Meeting New Genetic Discoveries in MS: What They Mean to Patients
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he Northern California Chapter’s 2007 Annual Meeting took place on Saturday, November 10 at the Holiday Inn Capitol Plaza in Sacramento with the keynote address by Dr. Stephen Hauser on , “New Genetic Discoveries in MS: What They Mean to Patients”. The meeting drew more than 250 attendees who braved the rain to learn about the Chapter’s achievements over the past year, honor our 2007 award recipients, and hear about the latest genetic advances in MS research from an internationallyrenowned neuroimmunologist. Opening our meeting, the Mayor of Sacramento Heather Fargo spoke of the need for heightened awareness of public accessibility for persons with disabilities. The Mayor shared her story of the disclosure of her diagnosis with MS, which was warmly received by attendees for its candor, genuineness, and authentic selfempowerment.
INSIDE THIS ISSUE:
Following lunch, the Chapter welcomed this year’s award recipients and presented
awards to those in attendance. Board of Trustees Chairman Dave Hultman and Chapter President David Hartman recognized Dr. Stephen L. Hauser, MD those volunteers and organizations who have contributed to the Society’s mission of moving towards a world free of MS over the past year. Award Recipients present at the meeting included The Sacramento River Cats (Community Leadership Award), The California Foundation for Independent Living Centers (Community Service Award), JoAnn Silva (Volunteer Service Award), Sebrina Jeffreys (Volunteer Leadership Award), Richard Parenti (Community Service Award), and Perry Ann Jeveli of Pear’s Pack (Top Fundraising Team Award: Walk MS). CONTINUED ON PG 4
Chapter News Page 5
Fundraising Page 7
Research Page 14
Money Matters Page 15
510-268-0572/1-800-344-4867 Publication of the National Multiple Sclerosis Society, Northern California Chapter 150 Grand Avenue Oakland, CA 94612 Chairman David R. Hultman Chapter President David Hartman Newsletter Editor James Dress
Can you help us?
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he Northern California Chapter is currently seeking volunteers to assist with publication production of our quarterly newsletter, MS Connection. Volunteers should have previous writing experience and knowledge of desktop publishing software (Publisher, Quark Express). If you are interested in contributing articles to our newsletter, please send writing samples and a brief summary of qualifications to: Newsletter Editor, at 150 Grand Avenue, Oakland, CA 94612 or james.dress@nmss.org.
The National MS Society is proud to be a source of information about MS. Information provided is based upon professional advice, published expertise and expert opinion, but does not constitute therapeutic recommendation or prescription. The Society recommends that all questions and information be discussed with a personal physician. The National MS Society does not endorse products, services or manufacturers. Sponsorship of Society programs or events does not connote that the National MS Society recognizes superiority in products or services provided by the sponsoring entity over other entities providing like or similar products or services. The Society assumes no liability for the use or contents of any products or services mentioned. Š 2007 National Multiple Sclerosis Society, Northern California Chapter
2008, Issue 1 – Published 4 times per year: Quarterly.
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Did You Know... Studies show that early and ongoing treatment with an FDA-approved therapy can reduce future disease activity and improve quality of life for many people with multiple sclerosis. National MS Society medical advisors recommend that people with MS talk with their health care professional about using one of these medications and about strategies and effective treatments to manage symptoms. If you or someone you know has MS, please contact the Society today at www.nationalmssociety.org or 1-800FIGHT-MS to learn about ways to help manage multiple sclerosis and about current research that may one day reveal a cure.
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am very grateful for the warm welcome I’ve received from so many of you during my first months as President of the Chapter. I’ve had the opportunity to meet folks from all over our territory at various events and activities. I’ve also worked closely with our staff, trustees, and other volunteers. In addition to the enthusiastic reception, I am inspired by the level of dedication and commitment to our mission. I’ve listened to people who want to improve our efforts, and I’m impressed by so many willing to step forward and help us make change happen. I’ve also heard from—and been moved by—others who are simply grateful because their lives have been touched by our work. Our Chapter spans a broad geographic territory, but by virtue of an individual’s involvement, we become part of a single community of like-minded people connected by our dedication to the mission—to end the devastating effects of MS. Through our activities with the Chapter, we are enacting the central theme of the MS Movement: moving forward together. We work collectively, toward a common goal, so together we form a movement, and collectively we are much more capable than the sum of our individual abilities. Movements bring change—like civil rights and suffrage—and the change we are working for here and now is creating a world free of MS. After a period of changes and rebuilding, we—all of us at the Northern California Chapter—are now moving forward together. We are addressing key issues that directly impact our services and considering how we can become more effective in serving our mission. We are
defining success and working hard to attain that success. We are also asking difficult questions to help us improve our work and better address the challenges of each person living with MS in Northern California. We are addressing the challenges of people living with MS in our communities through our advocacy efforts, educational programs, professional training, physical health, wellness, emotional health, employment assistance, informative publications, direct financial assistance, and long-term care services. We are able to do all this because we mobilize the talents and resources of people who want to do something about MS. But if we are to improve, we need more help. We need you to get (more) involved and to invite others to join this movement with you. We have a clear vision: a world free of MS. And we are all charged with an important role that will move us toward that vision. Serving the mission really does start with us, each one of us, making a commitment, doing as much as we can, so that together we are improving the lives of people who are affected by MS. As the year draws to a close, our thoughts often turn to giving; acknowledging the importance of our relationships with loved ones, family, friends and others. So it is a natural desire to want to be more a part of the MS Movement, to give of yourself and your resources in a way that will make a difference in the lives of others. That’s what we do at the MS Society, that’s what it means to be part of the MS Movement. CONTINUED ON PG 4 TOLL FREE NUMBER 1-800-344-4867
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CHAPTER NEWS
Letter From the President
CHAPTER NEWS
FROM PAGE 3 You give and you invite others to join you in giving. And you invite them to be part of something you are passionate about, giving them the opportunity to make a contribution that will have a lasting impact. I am proud to be a part of the Northern California Chapter’s team, where our
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a Sociedad Nacional de Esclerosis Múltiple ofrece información en español. Además prestamos libros y videos, siempre que estén disponibles en nuestra biblioteca. Para más información acerca de materiales en español por favor llame al-1-800-3444867.
Folletos Comparación de los Medicamentos Modificadores de la Enfermedad Controlando los Problemas de la Vejiga en la Esclerosis Múltiple Debo Trabajar: Información Para Empleados Ejercicios Prácticos de Estiramiento para las Personas con Esclerosis Múltiple Información Para Empleadores
FROM COVER In an engaging presentation, Dr. Stephen L. Hauser, MD, Chair of the Department of Neurology at the University of California, San Francisco (UCSF) detailed the history of the relationship between genetics and MS, starting with the first confirmed diagnosis in 1820 through the cuttingedge genetic research being conducted today by UCSF and its other partners in 4
dedicated volunteers and outstanding staff work tirelessly to address the needs of thousands of people affected by Multiple Sclerosis. I invite you to make a greater impact in the movement by getting involved. Please call, write, or just stop by the office if you would like to learn more, share your thoughts, or just get acquainted. ~ David Hartman, Chapter President
La Fatiga: Lo Que Usted Debe Saber Lo Que Todo El Mundo Debe Saber Sobre La Esclerosis Múltiple ¿Que es la Esclerosis Múltiple?
Libros La Comodidad Del Hogar Con Los Pies En La Tierra: Viviendo Con La Esclerosis Múltiple
Videos El Viaje de Timmy para Entender la EM Habla Con Tus Hijos Sobre la EM Mi Vida Antes Y Hoy
CD Hacia un Mejor Entendimiento de la Esclerosis Múltiple
the International MS Genetics Consortium. Dr. Hauser also emphasized the need to attract new, young scientists to the field of MS research, and indicated that future research will analyze the data currently being collected on genes and heredity in an attempt to one day predict who will be at risk of developing MS. Be sure to watch future newsletters for details and come join us next Fall in the South Bay for our 2008 annual meeting!
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CHAPTER NEWS
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or three and a half years, Joyce Bruno has faithfully come into the National MS Society, Northern California Chapter’s Oakland office. Joyce, now a grandmother, describes herself as an “information junky.” While reading a chapter newsletter soon after she was diagnosed with multiple sclerosis, Joyce decided that it was time for her to get involved. Upon completing the volunteer application and interview, Joyce was asked to join the peer counseling team. For eight weeks, six hours a day, Joyce attended a certification course. Her favorite part of being a peer counselor is knowing that she is helping people in over 40 counties get the quality of life they deserve. Joyce is able to tell people where to find top neurologists and counseling services in their area, recommend attorneys, and encourage them to take advantage of the services offered through the National MS Society. Joyce is now a dedicated office volunteer; helping with mailings, phone
calls, event materials and more. Rain or shine, Joyce cheerfully comes into the Oakland office three days a week. “I can never find a reason not to come. Volunteering brings me hope.” The staff at the National MS Society, Northern California Chapter is so grateful for Joyce’s enthusiasm and dedication. If anyone ever needs an extra hand, Joyce is there to help. Whether it’s making a phone call, sending out mailings, or attending a program, Joyce always has a smile on her face and happily gets the job done. If asked about volunteering in the Northern California office, Joyce would tell anyone to “do it!” “The chapter staff has become a second family to me. It keeps me going day after day!” If you would like more information on becoming an office volunteer in one of our three chapter offices, Oakland, Sacramento, or Santa Clara, please contact Sarah at sarah.hester@nmss.org or 1-800-344-4867, press 2 then ext. 118. TOLL FREE NUMBER 1-800-344-4867
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CHAPTER NEWS
Care Management Program Assists Society Members in Need
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he winter holidays are among us, and at first glance, there are many reasons to celebrate, to be joyous, and to cultivate gratitude. But for many persons with multiple sclerosis and limited funds, the holiday season can be a stressful experience. As a result, the Northern California Chapter is alleviating some of this stress by providing extra support around the holidays. Thanks to a generous holiday gift from one of our dearest friends, the National MS Society is able to provide grocery store gift cards to the participants of our Care Management program. All of the participants of our Care Management program have very limited financial means and deal with multiple daily stressors that go well beyond coping with MS. These gift cards will allow all of the families participating in our Care Management program to purchase holiday groceries that may not have been financially possible otherwise. The Care Management program serves people in Northern California living with multiple sclerosis, whose chronic long-term
care needs exceed their resources and can no longer be solely met by family and friends. This program also assists families in navigating a fragmented and confusing healthcare and social service delivery system in order to access services and programs that support community living and avoid premature institutionalized care. The goal of our Care Management program is to coordinate social, economic, and health care resources to meet individual needs and prevent costlier care. Care Management and Financial Assistance Programs have an immediate and direct effect on people with the highest level of need. This type of support would not be possible without the generous gifts of our donors. If you, or someone you know, would be interested in contributing to, or would like more information about our Care Management or Financial Assistance Programs, please contact Jaclyn Smoczynski at 1-800-3444867, option 2, ext. 108.
“ICE Campaign”
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here are hundreds of numbers stored in your mobile phone but which one is the contact person in case of emergency? Hence this “ICE” (In Case of Emergency) Campaign. The concept of “ICE” is catching on quickly. It is a method of contact during emergency situations. As cell phones are carried by the majority of the population, all you need to do is store the number of a contact person or persons who should be contacted during emergency under the name “ICE” (In Case of Emergency). 6
The idea was thought up by a paramedic who found that went he went to the scenes of accidents, there were always mobile phones with patients but they didn’t know which number to call. He therefore thought that it would be a good idea if there was a nationally recognized name for this purpose. In an emergency situation, Emergency Service personnel and hospital Staff would be able to quickly contact the right person by simply dialing the number you have stored as “ICE”. For more than one contact name simply enter ICE1, ICE 2, and ICE3 etc. Be sure it’s in your kids’ cell phones as well.
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FUNDRAISING
The 2007 Waves to Wine MS Bike Ride Rolls to a New Record!
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ou should have been there! How can a few words and photos do justice to the excitement, the fun, the inspiration and the spirit of a remarkable event like September’s Waves to Wine MS Bike Ride? The event drew a record-breaking 1,600 cyclists and raised more than $1.24 million, breaking last year’s participation and fundraising records by more than 30 percent!
Adding to the excitement was the unveiling of a breathtaking new route that began at San Francisco’s AT&T Park, continued down the Embarcadero, over the Golden Gate Bridge and through Marin County to an overnight celebration in Rohnert Park. Our day two route meandered through Sonoma County vineyards to our final destination, Lake Sonoma in Healdsburg. More than 120 teams participated throughout the weekend, including our biggest team, Genentech with 115 riders who raised more than $75,000 to date!
Our top ten fundraising teams were: 1 - Team Genentech 2 - Deloitte Difference 3 - WeFightMS.com 4 - Team Little Lissie 5 - Mitzvah Milers 6 - Kaiser Cruisers 7 - Team Schwab 8 - Don’t MS with US 9 - Anti-MS Crew 10 - Barreling up the Coast
$75,874 $65,134 $57,709 $44,265 $42,742 $39,769 $30,565 $28,834 $28,182 $26,709
The top ten fundraisers overall were: 1 - David Patterson 2 - David Schenkein 3 - Jim Forni 4 - John Sullivan 5 - Tom Galizia 6 - Laura Hawkins 7 - Dean Castelli 8 - Charles Myers 9 - Eleonore Saenger 10 - Daniel Siegel
$17,310 $17,070 $13,108 $11,875 $11,625 $10,785 $10,300 $10,286 $9,850 $8,302
A very special thank you to our generous event sponsors Genentech, Deloitte, and Del Monte who helped underwrite the cost of the event. Join us for Bike MS: Waves to Wine Ride on September 13th and 14th, 2008! For more information, visit our web site at www.nationalmssociety.org/can.
TOLL FREE NUMBER 1-800-344-4867
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FUNDRAISING
Register now for Walk MS 2008! Walk to create a world free of MS. By participating in a Walk MS event near you, you join over 250,000 other walkers in more than 600 cities across the country in making one powerful statement, to keep us moving toward a cure. Join the Movement and register now for a Walk MS near you!
Saturday, May 3, 2008 Alameda Merced Modesto
Rocklin San Jose Walnut Creek Yuba City
Sunday, May 4, 2008 Monterey Sacramento San Francisco Santa Rosa For more information and to register quickly and easily online, visit the Chapter’s website or go directly to: http://walkcan. nationalmssociety.org
2008 MS Luncheon
Bringing support for those with MS to the table Join us! Silicon Valley MS Luncheon Thursday, February 28, 2008 Fourth Street Summit Center 88 South Fourth Street, San Jose Reception 11:30 a.m. Lunch & Educational Program 12-1 p.m. Sacramento MS Luncheon Friday, February 29, 2008 Tsakopoulos Library Galleria 828 I Street, Sacramento
As an accomplished member of the US Cycling Team, Maureen won a World Championship and set a national record. When her cycling career came to an abrupt halt with her MS diagnosis, Maureen turned her focus to a new journey. She now works as a life coach, consultant and tireless advocate for those living with MS. Tables of 10 start at $1,250 and individual tickets are $125. Sponsorship opportunities are also available.
Reception 11:30 a.m. Lunch & Educational Program 12-1 p.m.
To reserve your table or tickets or for further information, contact:
Emcee: Pamela Wu, KCRA Anchor Honorary Event Chair: Mayor Heather Fargo, City of Sacramento
Christi Rossi Development Manager 1-800-344-4867, option 2, ext. 128 christi.rossi@nmss.org
Our keynote speaker for both luncheons will be Maureen Manley, MA. 8
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person diagnosed with CIS, or Clinically Isolated Syndrome, typically has experienced a single neurological symptom, such as partial vision loss, vertigo, double vision, or weakness. The symptom lasts at least 24 hours and may even continue for weeks, but then goes away, often without treatment. “[CIS] typically occurs out of the blue in an otherwise healthy person,” said J. Theodore Phillips, MD, PhD, director of the MS Center at Texas Neurology in Dallas. “It appears to be occurring in an isolated fashion.” To be diagnosed with CIS, all other explanations for the symptom have to be ruled out.
Is CIS an early sign of MS?
single event will evolve into MS?” Diseasemodifying drugs are expensive, inconvenient, and do not cure MS, he pointed out.
MRI evidence makes the case Long-term studies show that what a person’s MRI looked like at the time of a CIS largely indicated whether they went on to develop MS. “If the MRI is completely normal with the exception of abnormality associated with the CIS, then that person has a relatively low risk of MS even 15 years out,” said Dr. Phillips. “But if there are multiple lesions consistent with MS, that person has a pretty high risk.” When that’s the case, many neurologists recommend early intervention with a disease-modifying drug. Insurance coverage for Avonex or Betaseron shouldn’t be a problem, since the FDA now includes CIS as an indication for both drugs.
The big question with CIS is whether it indicates early development of MS. The second question is whether early intervention can help slow down that development. In three large clinical trials, early treatment appeared to delay a second episode. The results were so positive, the FDA extended the labeling of Avonex and Betaseron to include people who have had just one clinical episode if they have multiple MRIdetected lesions consistent with MS.
Is early intervention necessary? “If started early in the appropriate person, these medications can be important in slowing down the progression into classic MS,” Dr. Phillips said. “But who is the appropriate person? Do I know that this TOLL FREE NUMBER 1-800-344-4867
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NEWLY DIAGNOSED
What is CIS?
NEWS
Medicare Part D 2008 Sign-Up or Switch
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he annual enrollment period for Medicare’s Part D prescription drug plans is November 15 to December 31, 2007. With a few exceptions, beneficiaries can only join or change plans in this period. ∫ Don’t assume that your current plan
will continue covering the same drugs at the same cost in 2008. There may be another plan that better suits your needs. ∫ If you already have a Part D drug plan,
you should have already received a notice by October 31 listing any changes in coverage or costs for 2008. ∫ Compare this new plan with others
offered for 2008. Are there higher premiums, deductibles, or co-payments? Has coverage during the donut-hole period changed? Most importantly, does the plan cover all your medications? If you have questions, contact your plan.
Shop Around Wisely Open enrollment to choose a new Medicare prescription drug benefit is November 15 - December 31, 2007. Some key resources are: n Medicare.gov offers comprehensive tools to assist beneficiaries in selecting a plan. You may also get information at 1-800 633-4227. n The Health Insurance Counseling and Advocacy Program (HICAP) offers free individual counseling. Call (800) 434-0222 to locate the HICAP in your county or visit calmedicare.org n The Medicare Rights Center provides Medicare Part D information at medicarerights.org n Benefitscheckup.org is run by the National Council on Aging and supported by major drugstores, insurers and pharmaceutical companies.
∫ If you want to stay with your plan, do
nothing. ∫ If you are signing up for the first time or
want to switch, find out what’s available in your area and compare plans by using the Medicare Prescription Drug Plan Finder at www.medicare.gov. Or call Medicare at 800-633-4227. ∫ For more help with choosing a plan, use
the link www.shiptalk.org to find your State Health Insurance Program, or SHIP. For assistance, call us at 1-800-344-4867 or go to nationalmssociety.org/Medicare. 10 JOIN THE MOVEMENT: nationalMSsociety.org/can
n You can obtain information about Medicare Part D from AARP at aarp.org or call (888) 687-2277.
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his year the National MS Society Scholarship Program has awarded 332 scholarships to college-bound high school students and graduates. The program has grown exponentially since it was launched five years ago in 2003. Three four-year scholarships of $10,500 each were awarded to the Society’s Presidential Scholar, Christina Fitzsimmons (top photo); the Mike Dugan Scholar, Andrew Carpenter (bottom photo) ; and the Stitzer Family Memorial Scholar, Natasha Spedalle. The complete list of recipients, with excerpts from their personal essays, is available at nationalmssociety. org/scholarship.
Eligibility for 2008 High school seniors or graduates who have MS or a parent with MS and who will be attending an accredited post secondary school for the first time next fall are eligible.
Current clinical trials in the chapter area Name of studies: MS Research Studies Purpose of studies: The Research and Education Institute (REDI) of Alta Bates Summit Medical Center is currently participating in a number of clinical research trials involving Relapsing Remitting Multiple Sclerosis. Contact: To find out if you are eligible, please call Stephanie, 510-849-0417, ext. 14. Name of study: African-American Multiple Sclerosis Genetics Project. Purpose of study: The MS Genetics Group at the University of California at San Francisco is dedicated to finding the genetic causes of MS. This knowledge will create new opportunities to prevent and cure this life-altering disease. The more people who participate in this project, the closer we come to understanding the causes of MS. We handle medical records and personal information you share with us in a strictly confidential manner.
Applications and information can be downloaded at nationalmssociety.org/scholarship. Or call us at 1-800-344-4867 to receive a copy by mail. Completed applications are due January 15, 2008.
Eligibility: If you or a family member has been diagnosed with MS, we invite you to become involved with the AfricanAmerican Multiple Sclerosis Genetics Project.
For help with filling out the form, contact Scholarship America, a non-profit organization that receives and screens the applications, at 1-800-537-4180, extension 471.
Contact: Clinical Coordinator, UCSF Department of Neurology, San Francisco, CA 94143-0435, or call toll-free 1-866-MSGENES or 1-866-674-3637, or visit www. ucsf.edu/msdb.
TOLL FREE NUMBER 1-800-344-4867
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CLINICAL TRIALS
2007 Scholarship Program biggest yet
WAYS TO GIVE
Make a Gift Before Year’s End
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ow is the time to maximize 2007 income tax deductions by making donations to nonprofit organizations, including the National MS Society. The Society encourages you to give prudently, joyfully, and generously. Here are a few tips to help you make the most of your year-end giving:
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Give early Gifts of non-cash assets (IRA transfers, stock, real estate, etc.) or life-income gifts (gift annuities, trust arrangements, etc.) may take a little time to arrange. Your professional advisor and the Society’s Gift Planning Office will appreciate helping you avoid the end of year rush with early gift activity.
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Transfer IRA tax free Those over the age of 70-½ qualify under the Pension Protection Act to donate up to $100,000 in 2007 from an IRA to charity. These gifts are tax-free and may help you meet your required IRA distribution levels. Simply direct your fund administrator to transfer a portion of your IRA on or before December 31, 2007, directly to the MS Society.
Get advice Before making any significant gift to the Society, have your CPA, attorney, or other advisor determine the impact on your income tax return and estate. If facing a large tax bill this year, you may want to create a larger charitable tax deduction for yourself. You must make gifts before December 31.
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Consider a charitable gift annuity Charitable gift annuities provide you with guaranteed payments for your life as well as current tax benefits. Our gift annuity administrator can assist you and your advisor with confidential personalized illustrations and printed material.
For more information about the year-end giving opportunities at the National MS Society, contact us at 1-800-344-4867 or read more about making a special gift by going to nationalmssociety.org/donate and clicking on Planned Giving. —From the National Gift Planning Team
Review your stocks Look at appreciated stocks you have held for more than a year. It may be prudent for you to make a year-end gift using appreciated stocks—you will avoid capital gains taxes in the process. By giving the stock to the Society and allowing us to sell it, you may also receive a charitable deduction for the full value of the stock.
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TAMING HOLIDAY STRESS Think about past holidays and choose two or three of your most cherished rituals. Cast off others that are just habit or obligation. That way you won’t burn out trying to do everything.
The Pen is Mightier Than the Sword
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he 2007 legislative session provided an exciting opportunity for MS Activists to meet and advocate directly with key legislators and Governor Schwarzenegger on important issues affecting the lives of persons with MS and their loved ones. MS Activists throughout California marshaled forces and went into political battle over key principles associated with healthcare reform, long term care, disability rights, and preservation of key state programs. Besides conducting face to face meetings with policy makers, Activists provided testimony at key hearings and wrote thousands of letters to legislators urging them to vote supporting the MS Society’s position on a host of bills. Unfortunately, both paid and unpaid family leave legislation-- which would have expanded the scope of the family temporary disability insurance program to include grandparents, grandchildren, parents-in-law and siblings within the definition of “family member”- were met by Governor Schwarzenegger’s veto pen. Despite this setback, our Chapter volunteers and staff engaged in an all-out effort that galvanized the MS Advocacy community resulting in an even stronger network of committed volunteers for future attempts at expanding the California Family Leave Act. While the Governor also vetoed the Nursing Home Information Accessibility Act of 2007, which would have required
the Department of Public Health to implement an online inquiry system with profiles of long-term care facilities in the state, he did sign into law AB 1298 (Jones D--Sacramento), which protects patients’ electronic medical information. Also becoming law is AB 18 (Blakeslee R-San Luis Obispo) which provides that a person with a disability who is unable to write may use a signature stamp or authorize another person to use the stamp to serve as his or her signature for any purpose specified in the Election Code. For a complete list of our priority bills that passed or failed, please visit our Chapter website at www. nationalmssociety.org/can and click on “Advocacy” then “Legislative Resource Center” to find the year end legislative report.
MS Activists Make Statewide Impact 2007 was another banner year by volunteers leading in several policy areas including: Frank Austin—Appointed to the State Office of Emergency Services which is charged with drafting an emergency disaster preparedness plan for persons with disabilities.
CONTINUED ON PG 20 TOLL FREE NUMBER 1-800-344-4867
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ADVOCACY
MS-CAN Legislative Year End Roundup
RESEARCH
Society-funded researchers discover two new “MS risk” genes S is not a single-gene disorder. Researchers have already concluded that the disease involves many genes interacting with some environmental trigger or triggers.
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Interleukin-2 and -7 have been associated with T cells that have the power to turn off an immune attack. Research has shown that interleukin-2 is involved in other auto-immune diseases, including type 1 diabetes.
Locating the specific genes that are associated with a higher risk for MS can tell scientists more about how the disease works—and may lead to new therapies.
The IMSGC published these findings in an early online edition of The New England Journal of Medicine (July 29, 2007). The study was jointly funded by the Society and Harvard University. All of the data from the gene scan is being made publicly available to aid future research.
For more than a decade, the National MS Society has taken the lead, aggressively funding MS genetics research. It helped launch the International Multiple Sclerosis Genetics Consortium (IMSGC), a collaborative group of researchers with expertise in genetics, database design, and immunology who pool the large amounts of data needed for genetics studies.
New findings This year, the IMSGC completed the largest genome scan for MS to date. Using a DNA chip that maps 500,000 individual genetic locations they found two genetic variations strongly associated with MS. The variations were found in the genes for interleukin-2 receptor-alpha and interleukin-7 receptor-alpha, both of which control cytokines—the messenger proteins that regulate immune cells.
Two studies confirm findings Two papers published online in Nature Genetics on July 29 reported similar findings associating interleukin-7 with MS. In the first, an international group of collaborators funded in part by the Society explored three genes that had earlier been associated with MS. The group was able to confirm an association with the gene for interleukin-7. The second paper—by collaborators in Sweden, Denmark, Finland, and Norway— followed up an earlier study and also identified interleukin-7.
The road ahead The findings of all three studies suggest possible new targets for better MS therapies. One therapy is already being tested. The monoclonal antibody “daclizumab” (PDL BioPharma and Biogen Idec) targets interleukin-2 receptor-alpha.
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MONEY MATTERS
Some plain talk about life insurance Kim Calder, MPS
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an a person with MS purchase life insurance? This is one of many insurance-related questions that may arise after a diagnosis of MS. The facts provide a somewhat mixed outlook for those who hope to include life insurance in their personal financial plans.
A survey of Society members living with MS conducted last year revealed that nearly 70% have a life insurance policy, although most of them obtained it prior to diagnosis. Slightly more than half of those who tried to get life insurance for the first time after diagnosis were turned down. But among those who obtained it after diagnosis, 70.1% reported no difficulty in purchasing it. About 16% reported being charged a higher rate because of MS and 20% said their coverage was limited due to their disease. (It is not known if the applicants who were turned down were different from those who were accepted. Were they older, for example, or more severely disabled? ) Risk is a complicated concept, because it relies on averages. A few people with MS who develop very progressive disease die prematurely of its complications (such as respiratory infections, for example). Thus overall life expectancy in MS is considered to be 95% of normal. Insurance companies give their best policy terms to the “best bets”—to people who are in perfect health. But that doesn’t mean a person with MS can’t obtain a policy, as our research showed. Here are some general tips for shopping for life insurance:
∫ Apply for life insurance as early in your
disease process as possible, before MS has a chance to impair your functioning any further. ∫ Never try to hide your diagnosis from an
insurance company or a broker working on your behalf. Failure to disclose any requested information is fraud, which could bring very severe (even criminal) penalties. ∫ If you are not satisfied with the offers
you receive, keep searching. ∫ Maximize your opportunities to obtain
life insurance through your own or your spouse’s employer. (Your spouse should do the same!) ∫ An insurance broker could save you a
lot of time and frustration. Call an MS Navigator at our chapter to help you find one.
If you are ultimately unable to purchase the life insurance coverage you are looking for, a good financial planner may be able to suggest other strategies to help you reach your financial goals and provide protection for your future. Ask your MS Navigator to help you identify a financial planner with whom you can review all the issues. TOLL FREE NUMBER 1 800 344 4867
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LIVING WITH MS
Everyday heroes
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ast year Jeanne Clem of Kentucky wrote the national office: “What I want for Christmas is to hear from everyday heroes who deserve to be heard. You hear celebrities’ stories on the news. But you don’t hear, “Two years ago today, Jeanne Clem was diagnosed with multiple sclerosis and her employment along with bits of her life were terminated —but here she is now, celebrating small victories!“ To accommodate this universal need, the Society created FaceofMS.org in March 2006. People have been posting stories there ever since. Here are two of them.
Tom Young, Ohio About 10 years or so ago, I was diagnosed with “probable” MS. Later the diagnosis became more definite…. My family MD said, “expect interesting symptoms.” He was certainly right about that. Some of the interesting symptoms included a sensation of flashing lights when I was in total darkness. Of course the less interesting symptoms bother me the most. The real bummer is that I have almost no sense of balance. I can only remain upright if I can see a horizon. The progression of the disease has been very slow because I’ve been taking a very expensive drug. I’m still working. I did, however, give up flying airplanes. If my sense of balance ever comes back the first thing I’m going to try to get is the required medical certificate and fly an airplane again.
Michele Mogck, Montana I was diagnosed six years ago, shortly after the birth of my beautiful daughter. People look at me strangely when I tell them that I feel MS is probably one of the best things that has ever happened to me. I have always been very driven—focused— never letting anything stand in my way. I was so focused, I was never, really, in the present. I’ve learned not to take things for granted—and to be thankful for everything that I do have. I shudder to think that had it not been for my MS, how quickly life would have passed without me taking the time to cherish, love, and just enjoy. Visit FaceofMS.org for many many more stories—and to add (or update) your own!
TAMING WORK STRESS Take a short break right at your desk. Mute the phone and the computer. Take off your glasses if you wear them. To help slow down your mind, inhale while thinking the word “peace,” then exhale to the word “tension.” Even five minutes of quiet breathing can bring some relief. For more ideas, visit our brochure Taming Stress at nationalmssociety. org/TamingStress. Or call us for a printed copy.
16 JOIN THE MOVEMENT: nationalMSsociety.org/can
T
browsers (e.g., Internet Explorer, Safari, etc.) will have the appropriate player already installed. If yours does not, you will be prompted to download it at no cost.
I’ve never used a sound file before!
You can also download the audio file to your computer by placing your cursor on the link and clicking the right-hand side of your mouse (right click). (Mac users, hold down the Apple key, then click.) Choose “Save Target As …” and then choose where on your computer you want to save the file. You should be able to choose “Desktop,” for example.
he National MS Society’s Web site features a number of sound files, including podcasts and archived webcasts, offering easy listening at your convenience. And beginning December 2007, an audio version of the national magazine, Momentum (formerly InsideMS), will also be available.
Actually, you probably have. A sound file is simply any electronic file that contains digital information to reproduce sound. CDs use very large sound files, using something called PCM coding. Because of their large size they aren’t used much on the Internet. Instead, files on the Web are usually in the MP3 format
What does that mean to me? The MP3 is compressed, eliminating portions of the audio file that are essentially unnecessary. That means you can download them relatively quickly. The Society’s pod-casts, archived webcasts, and the new audio version of Momentum are saved as MP3 files.
How do I listen to an MP3 file? Let’s try one of the Society’s podcasts as an example. First, go to nationalmssociety. org/podcasts and find a podcast that interests you. To listen to it immediately, just click on the link as you normally would and the file will play automatically in your browser. Most
Depending on whether you have a modem (telephone line) or broadband Internet connection, this will take a few seconds or a minute or so. Once the file is downloaded, you can select “open” and the file will begin to play right on your computer. If you would like to listen on your portable MP3 player, such as an iPod, simply move the file to the subdirectory where you keep your song files, then import the file into your MP3 management software, such as iTunes or Zune.
For more help Apple Computers www.apple.com/itunes Yahoo Podcasts podcasts.yahoo.com Zune www.zune.net About.com mp3.about.com
TOLL FREE NUMBER 1 800 344 4867
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LIVING WITH MS
Listen up!
SELF-HELP GROUPS
Northern California Self-Help Groups For a current listing of our self-help groups, please visit www.nationalmssociety.org/ can, then click on Client Programs, then Emotional Support, then Self-Help Groups.
Alameda County
Napa County
Alameda, Sharon 510-521-6260 or Ray 510-522-5210 Berkeley, Toni 510-735-7890 East Bay Lesbians, Jane 510-444-5257 Fremont, Kim 510-793-0765 Oakland, Barbara 510-482-0266 Oakland: African Americans, Jane 510-865-3698 Oakland: Latinos, Elsa 510-777-1414 Tri-Valley Pleasanton, Mary Beth 925-829-0832
Napa, Colin 707-944-2262 or Penelope 707-265-9680
Contra Costa County Brentwood: MS for lunch bunch, Kathy 925-286-7674 or Julie 925-513-4686 Mt. Diablo (Concord), Oscar 925-673-0984 (Call between 6:30-8:30pm Mon-Thurs.) El Cerrito, Sylvia 510-559-9319 Richmond, Vanda 510-559-1898
El Dorado County
Nevada County Grass Valley, Helen 530-268-3127or Dan 530-272-7636
Placer County Auburn, Ruth 530-888-8388 Roseville: Minimal Symptoms Group, Brett or Kelly 916-773-6799 or brettsmith51@comcast.net Lincoln, Marcia or Jerry 916-408-7899
Sacramento County Elk Grove, Willie 916-684-1677 or Dorothy 916-684-6849 Sacramento: Moving on with MS, Sylvia 916-349-1324 South Sacramento, Edie 916-688-2674
Placerville, Fred and Stacey 530-644-1188
San Benito County
Humboldt County
Hollister Group, Gina 831-636-3241, Robin 831-636-0930 or Helen 831-637-6267
Eureka, Ann Louise 707-839-0177 or Kim 707-445-9803
San Francisco County
Marin County Corte Madera, Verita 415-927-7068 or Anita 415-892-5548
Mendocino County Mendocino, Joanne 707-937-4929
Merced County Merced: MS Challengers, Susan 209-384-6533
San Francisco Forum, Dolores 415-4676186 or David 415-585-9851 SF Potluck Luncheon, Karen 415-584-6115 (Meets periodically) SF Sunset District, Tatiana 415-665-1178
San Joaquin County Stockton, Brenda 209-951-0536 or Mary 209-334-5670 Stockton, Betty 209-368-6026 Tracy, Linda 209-833-6882
Monterey County Monterey, Susan 831-659-1354 or MaryLee 831-373-2450 18 JOIN THE MOVEMENT: nationalMSsociety.org/can
Solano County
NEW – Now Forming! San Mateo, Eli 650-377-1970 San Mateo, George 650-593-5154
Vacaville, Debrah 707-447-9603 (before 7:00 pm) or Marian 707-422-7515 Vallejo, Pam 707-745-3704 or Marian 707-745-9333 Solano County Group, Pam 707-745-3704
Santa Clara County Milpitas, Indu 510-656-3408 Palo Alto, Phyllis 650-321-9081 or George 650-593-5154 San Jose, Cor 408-270-8922 or David 408-578-3752 Santa Clara, Brian 408-739-9445 or Susan 408-253-4489
Santa Cruz County
Sonoma County Santa Rosa, Debbie 707-569-9976 NEW! Rohnert Park / Petaluma, Debbie 707-569-9976 Healdsburg, Kate 707-433-9194 Sonoma Women’s Group, Noreen 707-933-9500
Stanislaus County
Capitola, Tom 831-684-2252 or Ada 831-440-1211
Modesto, Pati 209-524-8329 Turlock, Bill 209-664-1427 or Frances 209-667-2184
Shasta County Hope 4 MS, Beth 530-246-8404 or Patricia 530-222-7277 or Robin 530-246-2980
Sutter County
Siskiyu County
Tehama County
NEW – Now Forming! Yreka, Wynonna 530-842-1849
Red Bluff, Teresa 530-529-4412 or Jodine 530-528-8767
Yuba City, Evon 530-701-2189
Tuolumne County Sonora, Steven or Gloria, 209-532-5646
Join Action Alert
H
elp improve health care and other programs and services for people with MS. Join the Northern California’s Action Alert program, and you’ll receive periodic updates on what the chapter is doing at the State Capitol to improve public policy for people with MS. Also, we’ll let you know how you can be a local and national advocate, whether it’s by raising awareness in your community or contacting your legislators. To join Action Alert, contact Stewart Ferry at stewart.ferry@nmss.org or 1-800-344-4867, option 2.
TOLL FREE NUMBER 1-800-344-4867
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SELF-HELP GROUPS
San Mateo County
FROM PAGE 13 Stephanie Fisher—Gave expert testimony to the California State Assembly on the home and community based long term care needs of persons with MS who transition from Medical Facilities back into the community. Ralph Cyr—Provided survey questions to the Integrated Waste Management Board so they may implement a needle disposal policy that is “user-friendly” to our community. Tammy Pilisuk—Drafted a healthcare reform paper that was utilized by the other neurological disease organizations while advancing core principals of MS Community to the entire state legislature. Tammy was also selected to serve on the prestigious National MS Society Federal Activism Council.
Health Care Reform Looms as Overarching Issue Our statewide networks of activists have worked very hard to ensure that whatever type of healthcare reform bill may be passed includes the following key provisions: n Guaranteed Issue—Insurance for All
Californians regardless of health status & pre-existing conditions n Coverage for Assistive Technology and Durable Medical Equipment n Persons with chronic illness placed in the largest risk pool possible and NOT segregated from the general population n Rehabilitation Therapy included as “Preventative Services”
NON-PROFIT ORGANIZATION U.S. POSTAGE
PAID SALT LAKE CITY, UT PERMIT NO. 6699
Northern California Chapter 150 Grand Avenue Oakland, CA 94612 FORWARDING SERVICE REQUESTED