Winter 2014/2015
Northern California Chapter
MS Connection Newsletter the power of a gift A week before the birth of her daughter in 1977, JoAnn LeMaistre, PhD, completed her training to become a clinical psychologist. Six weeks later, she had a very severe attack of MS. For this soon to be single mother, the debilitating symptoms and terrifying unknowns were overwhelming. After many doctor’s visits, Dr. LeMaistre received her official MS diagnosis in 1978. Dr. LeMaistre’s neurologist connected her with the National MS Society for resources and information about the disease. “I attended an all-day workshop about MS and learned that people working at the time of their diagnosis were still working 20 years later. That was very reassuring; MS did not need to define my life.” “I volunteered for a year, passed my licensing exam, went back to work, and maintained my relationship with the National MS Society,” said Dr. LeMaistre. She became involved with the local Chapter, winning the “Mother of the Year” award and the first Achievement Award given by the Santa Clara office.
INSIDE 04 THIS ISSUE
research
Through the ups and downs of MS, Dr. LeMaistre kept active, even writing a self help book about the many emotional responses to chronic physical illness. After the Diagnosis: From Crisis to Personal Renewal for Patients with Chronic Illness reached many people and their families. “Now out of print, I still get letters of appreciation from readers. In fact, a hospital in London still recommends the book to its patients,” said Dr. LeMaistre. continued on page 3...
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programs & services
living with ms
connect at walk ms
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MS connection: Winter 2014/2015
letter from the president
cheers to the new year 2014 is coming to a close and I am so proud of the accomplishments our MS community has made. Our fundraising successes, research breakthroughs, accomplishments in advocacy, and, most importantly, efforts to connect people and their families to the resources they need all contribute to the truly remarkable work we did this year.
The Society’s promise around research is clear: stop disease progression, restore what’s been lost, and end ms forever. addressing the challenges of everyone affected by ms requires a similar focus and promise.
Connect with us online: www.nationalMSsociety.org/CAN Like us: facebook.com/MSnortherncal Follow us: twitter.com/MSnortherncal
None of this would be possible without the incredible support of our fundraisers, donors, volunteers, families, friends, and staff who support our efforts to spread awareness, be a strong voice, and inspire one another. I also thank YOU, a person living with this disease, for demonstrating strength, sharing your story, and encouraging us to fight for a cure. The National MS Society is more than an organization dedicated to addressing the challenges of MS; we are a family comprised of hard-working individuals who want to do something about MS now. We have a lot to look forward to next year, including: • Opportunities to learn in person and online about topics such as research, employment, symptom management, and more; • MS Awareness Week (March 2 - 8), our annual week to celebrate our progress and tell the world about multiple sclerosis; • Inspiring community events such as Walk MS, DuskBuster, Bike MS, and more; I hope you’ll join me in celebrating a great year of progress for the MS community. Warm wishes this holiday season from our family to yours. Janelle Del Carlo Chapter President
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nationalmssociety.org/can | 1-800-344-4867
the power of a gift ...continued from page 1 In 2014, the gifts Dr. LeMaistre had been selflessly giving for 36 years were reciprocated in an unexpected way. Noticing she wasn’t looking as strong as she had been before, a friend offered to give Dr. LeMaistre the gift of being able to seek medical help anywhere in the world, should she need it. “I couldn’t accept a gift of this size for myself,” she said, and in 2014, the Northern California Chapter received a gift of $1 million for MS research in honor of JoAnn. “It was so heartfelt and kind,” she said, “and this generous gift will absolutely benefit us all by reaching the next set of opportunities in MS research.” This incredible gift to support critical MS research has limitless possibilities. For Dr. LeMaistre, the excitement lies in seeing the research process unfold. “I’ve always believed the key to MS has been elusive,” said Dr. LeMaistre,
National Multiple Sclerosis Society Northern California Chapter 1700 Owens Street, Suite 190 San Francisco, CA 94158 1-800-344-4867 Chair: Angie Lai Chapter President: Janelle Del Carlo Editor: Emily Hazlett © 2014 National MS Society, Northern California Chapter; Published Quarterly—Winter 2014/2015
“and understanding a disease as complex as MS, one can miss the forest for the trees. I am optimistic that the way through the forest is by expanding what we understand.” With more research for MS treatments than at any other point in history, and many dedicated scientists hard at work right here in Northern California, the possibilities are indeed endless. “Each day we manage lives complicated by MS as well as we can, and every individual pushes these possibilities forward,” said Dr. LeMaistre. A gift can come in many forms, sometimes unexpectedly. We do know that, for millions of people affected by MS, the gift of research is one of the most powerful, providing hope and promise of a world without MS. n Information provided by the Society is based upon professional advice, published experience and expert opinion. Information provided in response to questions does not constitute therapeutic recommendations or prescriptions. The National Multiple Sclerosis Society recommends that all questions and information be discussed with a personal physician. The Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The Society assumes no liability for the use or contents of any product or service mentioned.
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MS connection: Winter 2014/2015
north american educational program
Mood & Cognition: what you can do
This program explores why and how people with MS experience changes in mood and cognitive functioning, and provides the latest information on how these symptoms can be addressed — from physical activity, medications and counseling to self-management strategies. Chapter staff will show a DVD and lead an interactive discussion. Register online today at nationalMSsociety.org/CAN or call 800344-4867.
Saturday, January 17, 2015 | 12:00pm Kaiser Permanente 3701 Broadway(2nd Floor Meeting Room), Oakland 94611 Saturday, January 17, 2015 | 11:50am Aegis of Corte Madera 5555 Paradise Dr., Corte Madera 94925
Register today for a program in your area:
Monday, January 26, 2015 | 7:00pm Palo Alto Medical Foundation, Clark Building 795 El Camino Real, Palo Alto 94301
Saturday, January 10, 2015 | 2:00pm Martin Luther King Jr Library 7340 24th Street Bypass, Sacramento 95822
Wednesday, January 28, 2015 | 6:30pm Hazel Hopkins Memorial Hospital 911 Sunset Dr, Hollister 95023
Monday, January 12, 2015 | 12:00pm Round Table Pizza 2065 Occidental Rd., Santa Rosa 95401
Friday, January 30, 2015 | 11:00am Glenbrook Apartment Community Room 265 Sutton Way, Grass Valley 95945
Wednesday, January 14, 2015 | 1:00pm Lone Tree Golf Course 4800 Golf Course Road, Antioch 94531
Saturday, February 7, 2015 | 10:00am Redding Christian Fellowship 2157 Victor Ave., Redding 96001
Saturday, January 17, 2015 | 10:00am National MS Society 422 McHenry Blvd, Modesto 95354
Monday, February 9, 2015 | 5:30pm Enloe Rehab Center 340 W. East Ave, Chico 95926
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nationalmssociety.org/can | 1-800-344-4867
Tuesday, February 10, 2015 | 11:30am Santa Teresa Library 290 International Circle, San Jose 95119
listen & learn
Saturday, February 14, 2015 | 12:30pm Kaiser Permanente 39400 Paseo Padre Pkwy, Niles Building, Room G, Fremont 94560
MS Research: Your Questions Answered
Saturday, February 21, 2015 | 10:00am Multi Purpose Center in Dewitt Center 11577 E Avenue, Auburn 95603 Saturday, February 21, 2015 | 12:00pm Mary’s Pizza Shack 9010 Brooks Road South, Windsor 95492 Saturday, March 7, 2015 | 10:00am Meadows Community Center 2520 Hubbard Lane, Eureka 95501 Wednesday, March 11, 2015 | 12:00pm Albany Library 1247 Marin Ave, Albany 94706 Saturday, March 14, 2015 | 10:00am Mercy San Juan – Lukens Auditorium 6555 Coyle Avenue, Carmichael 95608 Monday, March 16, 2015 | 11:30am Round Table Banquet Room 253 Spreckles Rd, Manteca 95336 Wednesday, March 18, 2015 | 6:00pm Sutter North Medical Foundation 444 Plumas Blvd., Yuba City 95991 Saturday, March 21, 2015 | 1:00pm John Muir Hospital Concord Campus 540 East St., Kunkle Room, Concord 94520
Tuesday, January 20, 4:00pm Thursday, January 22, 7:00pm Explore current work being done by the Progressive MS Alliance Initiative and the Wellness Work Group with Bruce Bebo, Associate Vice President of Research, National MS Society and Doug Landsman, Senior Director of International Research Programs, National MS Society.
Legal Basics – Know Your Rights
Thursday, February 12, 5:00pm Learn about your rights under the Americans with Disabilities Act (ADA) including disclosure. Discuss practical ways to be proactive in your work situation and hear about employment rights-related experience from an individual living with MS.
Managing Cognitive Symptoms and Fatigue in the Workplace
Thursday, February 26, 5:00pm Neuropsychologist, Dr. Cynthia Sullivan, and occupational therapist, Tracy Carrasco, will discuss how cognitive dysfunction and fatigue may present themselves and share practical ways to manage them on the job. RSVP today at nationalMSsociety.org/ telelearn or call 800-344-4867.
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MS connection: Winter 2014/2015
research
sleep and Ms Researchers are increasingly looking at lifestyle factors as a means of identifying the causes of MS symptoms and mitigating their effects. A new study by Dr. Stephen D. Brass, MD, MPH, MBA (University of California, Davis) and colleagues suggests that identifying and treating sleep disorders experienced by people with MS could significantly improve quality of life.
undiagnosed disorders In the largest sleep study conducted to date, more than 2,300 people with MS from the Northern California Chapter were asked to answer survey questions regarding primary sleep disorders, sleepiness, fatigue severity, and sleep patterns. Researchers found that 70% reported having at least one sleep disorder, but 12% or fewer had received a diagnosis of, or treatment for, a sleep disorder.
Positive Screening Results for Sleep Disorders:
These disorders, including insomnia, obstructive sleep apnea and restless leg syndrome, were associated in this study with abnormal levels of fatigue, a common symptom experienced by people with MS. 30% of the survey respondents noted excessive daytime sleepiness, while more than 60% reported an abnormal level of fatigue.
potential links This study adds to growing evidence of a high prevalence of sleep disorders experienced by people with MS, and highlights a potential link between MS fatigue and sleep disorders. “This study shows how important it is to think about what role sleep problems pay in fatigue,” said Nicholas LaRocca, PhD, Vice President of Health Care Policy for the National MS Society. “Discussing this with a healthcare provider can help people affected by MS to find solutions to sleep problems and improve their daily lives. n
Healthy sleep tips n Practice
36.8% Restless Legs Syndrome
37.8% Obstructive Sleep Apnea
n Go
to bed at the same time every night, and wake up at the same time every morning (even on the weekends).
n Exercise
31.6% Moderate to Severe Insomnia
a relaxing bedtime ritual.
n Wind
daily.
down. Your body needs time to shift into sleep mode, so spend the last hour before bed doing a calming activity such as reading.
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nationalmssociety.org/can | 1-800-344-4867
living with ms
Multiple sclerosis has taken its toll on Deborah, 55, who was diagnosed in 1999. Initially, her disability began with walking difficulties and weakness, but soon progressed to requiring the assistance of a walker. Now, Deborah uses a scooter and wheelchair. Although her health and MS are stable, she was unable to transfer herself from her bed to wheelchair without assistance. Often relying on neighbors or having to call the fire department for help, Deborah desperately needed assistance and reached out to the Society. With the help of a grant from the Change a Life Foundation and financial assistance from the Chapter, Deborah was able to have a ceiling lift installed that can balance her weight and glide through her home, allowing her to independently transfer from bed to wheelchair. “Thanks to your assistance in having this ceiling lift installed, I now have my independence back. You have changed my life for the better and I cannot thank you enough for that,” said Deborah. The cost of multiple sclerosis can put a burden on your finances. Speak with an MS Navigator and get answers to all your financial questions and concerns. Call 800-FIGHT-MS (3444867) today! n
local heroes volunteer hall of fame Perry Ann Jeveli, Society volunteer for 19 years, was inducted into the National MS Society Volunteer Hall of Fame during the 2014 National Leadership Conference in November for her outstanding efforts to fund the mission and serve as a leader in the MS movement. Congratulations Perry Ann!
Heroes of the month Elsa A. Rivera has been volunteering since 2003 as a peer counselor, leader of a monthly bilingual self-help group, and a member of the Government Relations Committee. “Meeting and speaking with hundreds of people has given me the peace I feel today. I love being able to help other people,” said Elsa. Cheryl Hauber, a former Clinical Scientist in the organ transplantation unit at Addenbrook’s Hospital (UK), was diagnosed with MS in 2008 and started volunteering in 2011. “I wanted to contribute to furthering our knowledge of this debilitating disease and volunteering was one small way in which I could help,” said Cheryl. Linda Cotter, volunteering since 1998 as a “medic” at Bike MS: Waves to Wine, volunteers as a way of honoring her sister, Joany, who had MS for ten years. “I am proud to be a small part of such a big and worthy cause to honor Joany’s memory and help those who face their own MS challenges,” said Linda. n
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major victories
With the help of hundreds of MS Activists, two important bills supported by the MS California Action Network were recently signed into law by Governor Brown: The first victory came from Senate Bill 1052, which requires the Departments of Managed Health Care and Insurance to jointly develop a standard formulary template to be used by the health plans and insurers to display their drug formularies. This will make it easier for consumers to compare across plans. Our second major legislative achievement is the passage of Senate Bill 964 (Hernandez), which requires the DMHC’s oversight of health plans
year-end giving For more than twenty years, the Golden Circle campaign, the Northern California Chapter’s elite gift campaign, has raised million of dollars to accelerate the development of more effective MS treatments, search for the cause and cure of the disease, and expand the Chapter’s local programming for people with MS. Members of the Golden Circle carry on a tradition from the Society’s founder, Sylvia Lawry, who raised $100,000 in 1946 from friends and family members in her community to try to find an answer to
MS connection: Winter 2014/2015
in regards to compliance with timely access to care and provider network adequacy standards. This duel success would not have happened without the direct involvement of hundreds of MS Activists throughout California. From conducting face-to-face visits with legislators to testifying at committee hearings, staff and volunteers played a crucial role in these victories. If you have a background in political activism or would like to learn more about the Society’s priorities and efforts, please email Policy Director Stewart Ferry at stewart.ferry@nmss.org. the puzzle of this unpredictable disease. Golden Circle donors lead by example, making a powerful statement that their commitment to finding a cure for MS and to improving the lives of those with MS is persistent and passionate. Please consider joining Golden Circle with a membership gift of $1,000 and help us continue moving this important work forward. All gifts to Golden Circle directly support the MS community and can be paid annually or by monthly installment. For more information on supporting Golden Circle or to make a gift online, please visit the Chapter website at nationalMSsociety.org/CAN or contact Janelle Del Carlo, Chapter President, at 415-230-6678. n
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nationalmssociety.org/can | 1-800-344-4867
walk ms
moments that matter
By tukey seagraves
When I was diagnosed with MS in 1988, my biggest fear seemed to focus on the possibility of losing the use of my legs. I did pretty well for several years, but little by little, my fear became a reality. In 1999, I was diagnosed with secondary progressive MS. About three years ago it had gotten to the point that I had to use a wheelchair most of the time. Needless to say I was a bit overwhelmed. There was so much going on around me that I had no control over that I decided what I needed to do was to focus on something that I could control…my weight. I started a healthy diet and an exercising regimen. My neurologist suggested exercising in the pool, which I did everyday, even in the winter! The end result was that I lost 60 pounds, and, in addition to the weight loss, my legs became stronger.
Last year at the Walk MS in Monterey, I reached a major milestone. Only a couple of years earlier I could not even walk up our driveway, but on the walk last year I walked 4 miles. I walked for 2 miles, rode my chair for 2 miles, and then stood back up and walked the last two miles. I was the last one to cross the finish line but I didn’t care…I made it! The joy of that day continues to renew my spirit and helps me to remain positive as I continue to face the challenges of living with MS. n
Southern California tukey (center) with teammates & Nevada 2013
register today! visit walkms.org or 800-344-4867 April 18, 2015 Central Valley, Downey Community Park, Modesto East Bay, Lakeside Park, Lake Merritt Santa Rosa, Maria Carrillo High School April 19, 2015 Sacramento, West Steps, State Capitol Tri-Valley, Alameda County Fairgrounds, Pleasanton Walnut Creek, Heather Farms Park
April 25, 2015 Silicon Valley, Vasona Park, Los Gatos Solano County, Suisun City Waterfront april 26, 2015 San Francisco, Justin Herman Plaza North State, Bidwell Park, Chico Folsom, Sutter Street Plaza Monterey Bay, Lover’s Point Park Eureka, Eureka High School
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making waves The air buzzed with anticipation as thousands of cyclists crowded near the start line at the 31st annual Bike MS: Waves to Wine Ride on September 20. Chapter President Janelle Del Carlo welcomed and thanked cyclists, volunteers, friends, family members, and donors for their incredible efforts to fundraise over $2.672 million, surpassing the 2014 goal. Riders embarked on a beautiful two-day journey from San Francisco to Sonoma County, covering over 175 miles of sweeping ocean vistas and rolling vineyards. “This event is unique. Different types of people take on this ride for many different reasons, which gives it a warmth not found on a regular ride,” commented a veteran participant. n Registration is open for Bike MS: Waves to Wine 2015 on September 27 & 28. Register today at www.wavestowine.org!
MS connection: Winter 2014/2015
thank you to our sponsors
Special thanks to: Bayer, Biogen Idec, Charles Schwab, Genzyme and MS One to One, Kara’s Cupcakes, Kenda, Novartis, Primal Wear, Red Hat, Sonoma Mountain Village, and Waste Management.
corporate cup winners Congratulations to Team Chevron (Energy), Wells Fargo (Financial Services), Dignity Health Neurological Institute (Healthcare/ Life Sciences), EY/Parthenon Cycling Team (Professional Services), Salesforce.com & Friends (Technology), and Four Seasons Team Red Tent (Travel & Leisure)!
bike ms by the numbers
over
$$
raised over
2,500 participants
$2.672 million
to support 84,000 people with MS in Northern CAlifornia
thank you.
nationalmssociety.org/cal | 1-800-344-4867
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muckfest ms
SF Gets mucky The inaugural MuckFest MS San Francisco brought over 1,500 participants to play, romp, run, and jump in the mud on October 11. The event, which raised over $150,000, challenged muckers to a 5K trail with 19 obstacles, including muddy pits, trenches, and craters. “Our team had such a great time this year. I live with MS so coming out and having fun like this helps remind me that I am more than this disease,” said Valerie Rosado, Team Captain of Val’s Pals. Registration is open for the 2015 MuckFest MS San Francisco on October 10. Learn more at muckfestms.com! n
let’s walk!
For Colleen Brown, who was diagnosed with MS in 2001, the annual Challenge Walk MS from Carlsbad to San Diego is a personal challenge of spirit and strength. “My first year was life-changing,” remembered Colleen. “I walked away feeling like there was NOTHING I couldn’t do.” And so Colleen and her team, Nor Cal Street Walkers, have continued the three day, 50 mile journey for over 10 years. During this all inclusive weekend, Colleen and her team walk for three days and 50 miles along a beautiful coastline route to make a powerful statement, and to keep moving toward a cure for multiple sclerosis. “There’s something very special about being surrounded by an amazing group of people that are whole-heartedly
dedicated to putting an end to this disease,” said Colleen. Colleen and the Nor Cal Streetwalkers will take the challenge again this September 25 27 and encourage others to join. “You honestly don’t know what you are capable of until you complete a Challenge Walk. It really is lifechanging.” n
1700 Owens Street, Suite 190 San Francisco, CA 94158
Finish MS offers runners, cyclists, swimmers and endurance athletes of all types and abilities the chance to create a world free of MS while pushing their own personal limits. Join the Finish MS team at one of these great Rock ‘n’ Roll running series events: March 29, 2015 San Francisco, CA
Learn more at www.FinishMS.com or call 800-344-4867 today!
September 27, 2015 San Jose, CA
1/2 MARATHON & 10K