WINTER 2016/2017
NORTHERN CALIFORNIA CHAPTER
MS CONNECTION NEWSLETTER
INSIDE 04 THIS ISSUE
ADVOCACY
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PROGRAMS CONNECTION
LIVING WITH MS
SPECIAL EVENTS
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MS CONNECTION: WINTER 2016/2017
LETTER FROM THE PRESIDENT
CONNECT WITH US THIS FALL! September is here, and with it comes change. As we make our way into fall, we get closer to cooler temperatures, holidays and wrapping up another year. Autumn is a welcome time for transformation, and it is always important to be your own advocate throughout any change, and make decisions, when possible, that will be beneficial for you and your loved ones. Make sure to check out an important article on accessibility rights in the polling place (page 14).
The Northern California Chapter, and the National MS Society as a whole, continues to advocate for those living with MS and their families. If we don’t get to see you in person at Bike MS: Waves to Wine (September 24 - 25), follow us by using the hashtag #wavestowine2016 on Facebook and Instagram. We’re also looking forward to seeing you at Muckfest MS (October 1) - there’s still time to register at www.muckfestms.com! You can also be on the forefront of change by becoming an MS Activist. Sign up now at www.nationalmssociety. org/Get-Involved. Meet with elected officials, lobby for important legislation or simply share your personal story. Your story is a unique and powerful advocacy tool – perhaps the most powerful tool you possess. Each of us can raise awareness about MS and the needs of people affected by MS. Remember, together we are stronger. However you choose to join the movement, your contribution to the cause will get us closer to a world free of MS. Gratefully, Janelle Del Carlo Chapter President
CONNECT WITH US ONLINE: www.nationalMSsociety.org/CAN
MSNorthernCal MSnortherncal NorCalNMSS
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VOLUNTEERS
VOLUNTEER HEROES OF THE MONTH “Volunteering for the National MS Society is the best way for me to give back to the MS community. The first week after I was diagnosed, I was terrified, but I found out rather quickly that we all know someone who has been affected by it. I was amazed at how rapidly my support group grew. Now I am able to help others by using my construction company to build ramps and install handrails for those in need.” RC Banjanin
Carmen & Dean Lauerman
“We volunteer because we CAN volunteer. Since Dean was diagnosed with MS in 2003, there have been many advances in the fight to cure the disease that have greatly improved his quality of life. When we volunteer at events that raise money for MS research such as Waves to Wine or Walk MS, we feel like we are able to give back to help those with MS have a better quality of life. There is no end to our gratitude to everyone who has ever worked, volunteered, or researched to find a cure for MS.”
Eric McHenry
“This was the third consecutive year I’ve volunteered with the National MS Society. Every year, I am increasingly impressed by the support and services provided by the Society, coupled with the quality and professionalism of the staff. I don’t have the professional or medical skills for direct assistance to those affected by MS, but I can give my time, energy and enthusiasm during your special events. Kudos to the work and thanks again for all you do.”
NATIONAL MULTIPLE SCLEROSIS SOCIETY
Northern California Chapter 1700 Owens Street, Suite 190 San Francisco, CA 94158 1-800-344-4867 Chair: Jay Thayer Chapter President: Janelle Del Carlo Editor & Designer: Nare Ovsepian Copywriter: Sarah Sipniewski © 2016 National MS Society, Northern California Chapter; Published Quarterly—Winter 2016
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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REASEARCH
INVESTING IN THE FUTURE The National Multiple Sclerosis Society has committed $25.3 million to 60 new MS research projects that hold promise toward stopping MS, restoring lost function and ending MS forever. In addition, funding for one-year grants for 11 new pilot projects will allow MS researchers to investigate high-risk, high-potential strategies to understand, treat and manage MS. Studies that delve into genetic and environmental risk factors for MS include how vitamin D might protect individuals from developing the disease and how the influence of genes on immune cell activity might be a clue to stopping or preventing MS. Other studies are focusing on a range of strategies to stop MS progression or restore function. Following is a sampling of these promising projects.
THE WHY OF PROGRESSIVE MS Despite advances that have produced diseasemodifying therapies for relapsing forms of MS, treatments for progressive MS have remained elusive. To address that gap, the Society is supporting a large-scale study, SUMMIT (Serially Unified Multicenter Multiple Sclerosis Investigation), to leverage extensive information from long-term monitoring of more than 1,000 people with MS
THE NATIONAL MS SOCIETY HAS ALSO RENEWED ITS SUPPORT OF PEDIATRIC MS RESEARCH. to understand factors that lead to progression. The five-year study will bring together two MS Centers of Excellence, Harvard’s Brigham and Women’s Hospital and the University of California, San Francisco, to develop a database of invaluable information that will be open to researchers anywhere in the world. Another study, led by Dr. Claudia Lucchinetti and Charles Howe, PhD, at the Mayo Clinic and Foundation in Rochester, Minnesota, will conduct “metabolic profiling” of people with MS in order to better understand the role that metabolic stress, which spans a variety of problems in cells, including energy deficits and failure to recycle unneeded proteins, may play in MS progression. An interesting study at Washington University School of Medicine in St. Louis explores the role that sex differences may play in the transition of relapsing-remitting MS, the most common form of the disease in women, to secondary
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progressive MS. Researchers have found that the entry of harmful immune cells into the brain during MS is partially mediated by a molecule called S1PR2, which occurs in high levels in women with MS. Blocking S1PR2 in mice with an MS-like disease appears to improve disease severity in female, but not male, mice.
RESTORING LOSSES Research dedicated to restoring what’s been lost in MS focuses on understanding how nerves and their protective myelin coating normally work, how we can repair those critical tissues, and how restoring function may also include new strategies to manage common issues of MS. One study at John Hopkins University is focusing on a promising compound that may improve cognitive function in MS. The compound, a molecule called GCPII, was shown in mouse studies to improve cognitive performance, but only in very high doses administered via injection. Now, with the help of a drug discovery team with expertise in GCPII pharmacology, investigators are synthesizing and evaluating 20 to 30 new compounds to try to create an oral version. If they are successful, the compound could move to clinical trials to prove its safety and benefits. Another study at St. Joseph’s Hospital and Medical Center in Phoenix hopes to follow how a type of immune cell called a Natural Killer (NK) cell interacts with brain cells, possibly interfering with the repair process. These cells have been found to remain in the brains of people of MS and in mice with an MS-like
disease; eliminating NK cells in the latter was found to significantly improve their recovery.
LIVING WITH MS
Restoring function may also include new lifestyle and wellness approaches. Studies focusing on these areas include an international multicenter trial of an online program to reduce MS-related depression. While depression is a common symptom of MS, MS symptoms such as fatigue, cognitive challenges and mobility issues can make it difficult to attend in-person therapy sessions. The online program, called Deprexis, can be used in an individual’s home, eliminating the need for travel. Preliminary results have already indicated that the program may reduce depression in MS and researchers are now conducting a phase 3 trial at five MS centers in the U.S. and Germany in 400 people with MS. Recent research has also suggested that some individuals with MS have difficulty in “emotional processing” — specifically, recognizing emotions from people’s facial expressions. A team at Kessler Foundation Research Center in West Orange, New Jersey, is examining the effects of an intervention aimed at improving emotional processing. The intervention includes interactive training and a computer program to help improve facial affect recognition. To learn more about MS research and stay up to date on current studies, visit nationalMSsociety.org/research. n
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WELLNESS
DIET & MS While no diet has been proven to be a one-sizefits-all for people living with multiple sclerosis, maintaining a balanced and nutritious diet can help in maintaining an overall healthy lifestyle. Actions that may seem small, such as staying hydrated and avoiding skipped meals can help improve overall health, energy, bladder, and bowel function (www.nationalmssociety.org). Since this can be a challenge if you’re already low on energy, set yourself up for success by preparing what you can ahead of time. Here are some quick and easy nutrition tips to help get you started: 1. Infuse your water: Bored of plain ol’ water? Infuser water bottles are inexpensive and fun to use! Infusions are as simple as lemon slices, oranges & cinnamon sticks, or raspberries and mint leaves. Pair your favorite flavors for a delicious, hydrating beverage. 2. Healthy snacks: We all know how easy it is to reach into the pantry and grab the bag of chips when we are hungry or to eat ‘junk’ food when we are already low on energy. A great alternative is to prepare healthy options in advance and keep them handy and within eyesight. This can be in the refrigerator, pantry, or even in a bowl on the counter. Use snack-sized zip top bags to create your own trail mix (nuts, dried fruit, coconut flakes, etc.). Slice apples and soak them in a bowl of cold lemon water or lemon-lime carbonated soda for 3-5 minutes. This will
keep them from browning and will allow you to store them in an airtight zip top bag for up to 1 week in the refrigerator. Pair that with single-serve peanut butter for added protein. Frozen grapes or string cheese are also quick, easy, and healthier options. 3. Crock-pot cooking: Do you bring out the crock-pot only during the winter months for those warm, savory soups? Try using it yearround to avoid extra heat in the kitchen from the stovetop or oven. A great way to incorporate the crock-pot is to cook a large quantity of a protein that can be used for various meals throughout the week. Our favorite is frozen chicken breasts and a jar of salsa on low for seven hours. The chicken can be used in salads, tacos and burritos to have a fiesta all week long. Crock-pots are easy to use, and it leaves only one dish to clean up afterward! 4. Smoothies: Trying to incorporate more fruits and vegetables in your day? Throw your favorites together in a blender with some almond milk or coconut water and nonfat plain Greek yogurt and use frozen fruits or vegetables in lieu of ice for a tasty treat! A smoothie can be much easier to manage than eating the individual components separately. Small steps can make a big difference to help you stay on track with your health and wellness plan. Try to pick one of our tips to incorporate in your household this week! For more information, resources, and free publications visit www.nationalmssociety.org/ nutrition. n
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PROGRAMS CONNECTION
MS MANAGEMENT: INTEGRATING WELLNESS
Join us to receive updated information by Dr. Schafer and his team regarding multiple sclerosis. Learn the benefits of physical activity, nutrition and the options available to you, as well as updated information on MS and managing the disease. Modesto | November 12 | 9:00am National MS Society, Modesto Office 422 McHenry Ave. Modesto, CA 95354
To register for a program, visit nationalMSsociety.org/CAN and select the Calendar, or call (800) 344-4867.
LIVING WELL WITH MS: SPECIFIC TOPICS FOR MEN
Being male or female affects one’s experience of multiple sclerosis, from diagnosis through treatment decisions, symptom management, and mood. Sometimes, men’s symptoms of multiple sclerosis are incompletely addressed, and men have not been fully involved in support and advocacy networks in multiple sclerosis. Join us as Dr. Liz Crabtree-Hartman, Faculty in the UCSF MS Clinic Gender-Based Care programs, discusses whole-person approaches to living life fully as a man with MS. San Francisco Date and time will be determined soon! Call 1-800-344-4867 for more information.
NEWLY DIAGNOSED ORIENTATIONS AVAILABLE IN-PERSON OR ONLINE
Hearing the words “you have multiple sclerosis” can set off a flood of emotions, fears and questions. Join Society staff and MS health professionals in an open conversation about the disease, and discover how wellness practices can help you live your best life with MS.
ONLINE
Thursday, November 10, 6:00pm – 7:00pm, Online and over the phone. Presented by Dr. Elizabeth Crabtree-Hartman, Associate Clinical Professor of Neurology at UCSF and Director of Patient Program Development at UCSF’s MS Center.
SCHEDULE AN IN-PERSON ORIENTATION:
Napa, North Bay, North State, and Sonoma Counties: Amy at 530-863-7818 Central Valley: Andrea at 209-214-6022 Bay Area or Greater Sacramento Area: Zoe at 916-927-9113 ext. 75201 South Bay: Zoe at 916-927-9113 ext. 75201
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GET SOCIAL THIS FALL! MIX & MINGLE
Come join in the fun at our fall Mix and Mingle events! This fall social is the perfect opportunity for you to relax, eat some good food and connect with other members and Amy Clark, your local National MS Society Community Engagement Manager. Come solo or bring your family or your friends. Food will be provided by the National MS Society. Alcohol will be available for purchase. RSVP is required! We hope to see you there!
HOLIDAY SOCIALS!
Connect with your community! Please join us for dinner as we enjoy good company to kickoff the holiday season! Come meet others who live with MS, or care about someone with MS, at this social dinner event. Berkeley | December 7 | 6:00pm Ed Roberts Campus, 3075 Adeline St., Berkeley, CA 94703
McKinleyville | October 28 | 6:00pm 6 Rivers Brewery, 1300 Central Ave McKinleyville, CA 95519
Santa Clara | December 6 | 5:30pm Santa Clara MS Society Office, 2589 Scott Blvd., Santa Clara, CA 95050
Redding | November 9 | 6:00pm Moonstone Bistro, 3425 Placer St Redding, CA 96001
Modesto | December 8 | 5:30pm Limited space available. RSVP by December 5. National MS Society, Modesto Office, 422 McHenry Avenue, Modesto, CA 95354
Napa | November 11 | 6:00pm Trancas Steakhouse, 999 Trancas St. Napa, CA 94558 Napa Mix & Mingle is sponsored by Crush MS.
CRAFTING CONNECTIONS
Find your creative side with crafting events in your community. No experience is required and all ability levels are encouraged to attend. 1st Wednesday of the Month | 10:00am National MS Society, 422 McHenry Ave, Modesto
HOLIDAY MEAL PLANNING TIPS & TRICKS
Balancing meal planning can be a struggle, especially around the holidays. Luckily, Denise Nowack, RD has some tips and tricks to help us navigate holiday meals and preparations with limited stress. Pre-registration is required. Lunch will be served. Sacramento | November 14 | 10:30am MS Achievement Center, 7777 Greenback Lane Suite 108, Citrus Heights, CA 95610
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COFFEE CONNECTIONS
Looking to connect to others in the area living with MS in a relaxed setting? Come to one of our upcoming Coffee Connections to grab some coffee, get questions answered and make connections. Davis | 2nd Monday of the Month | 10:00am Panera Bread, 609 3rd St Dublin | 2nd Thursday of the Month | 10:00am Tous les Jours, 7151 Amador Plaza Rd Modesto | November 9 | 10:00am Greens Table, 501 Bangs Ave Oakland | November 8 | 10:00am Peet’s Coffee & Tea, 5095 Telegraph Ave, Ste 1 Palo Alto | 2nd Thursday of the Month | 11:30am Printer’s Café, 320 S. California Ave Sonora |1st Thursday of the Month | 11:00am Schnoog’s Cafe, 1005 Mono Way Stockton | December 6 | 10:00am House of Shaw Espresso Cafe, 227 Dorris Pl.
MS RESEARCH UPDATE
Are you interested in learning about the newest cutting- edge research discoveries in MS, like the latest in stem-cells and the possibility of a cure? Northern California MS researchers will be hosting this special series of MS research updates. North Coast | October 29 | 10:30am Dr. John Schafer, Mercy Medical Group Humboldt Area Foundation, Emmerson Room 363 Indianola Rd., Bayside, CA 95524 Santa Rosa | November 5 | 10:30am Dr. Jeffrey Gelfand, UCSF Finley Community Center, Willow Room 2060 W. College Ave., Santa Rosa, CA 95401 Sacramento | November 9 | 6:30pm Dr. John Schafer, Mercy Medical Group Mercy San Juan Medical Center Lukens Auditorium, 6555 Coyle Avenue Carmichael, CA 95608 San Jose | November 10 | 11:30am Dr. Christopher Lock, Stanford Santa Teresa Library, 290 International Cir, San Jose, CA 95119 Napa | November 12 | 12:00pm Dr. Lucas Kipp, Stanford Synergy Medical Fitness Center/Wellness Center Napa, 2nd Floor Conference Room 3421 Villa Ln, Napa, CA 94558
To register for a program, visit nationalMSsociety.org/CAN and select the Calendar, or call (800) 344-4867.
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PROGRAMS
FREE FROM FALLS
Falls Prevention Awareness Day is September 22, 2016, and the National MS Society is here to help you reduce your chances of falling. The Society’s Free From Falls program teaches participants risk factors commonly associated with falls and identifies strategies to prevent them. Aside from the physical impact that a fall can have, the experience can lead to a loss of independence and confidence. Many common MS symptoms make falls more likely, such as incoordination, weakness, dizziness and vertigo. Plus, neurological damage caused by MS can affect how the brain perceives body movement and position, which impacts how quickly someone is able to react to an obstacle. Join us for Free from Falls in Oakland and learn tips and tricks to prevent falls, plus develop a fitness plan to improve balance, endurance, strength and mobility. Through this program, you will be able to increase your overall confidence about avoiding falls and managing them if they do occur. Level 1: You must be able to walk at least 15 steps unaided or with only one cane, crutch or walking stick. Level 2: You are experiencing moderate mobility impairment, utilizing a mobility device such as a cane, walker or wheelchair/ scooter, but are capable of independently transferring, standing and walking a few steps or short distances. Oakland | 8 weeks | Thursdays October 13 - December 8 (excluding Thanksgiving) 6:00pm - 8:00pm Samuel Merritt University Peralta Pavilion Room 722, 450 30th Street Oakland, CA 94609 Please pre-register online. For more information or to discuss the application and assessment process please contact: Zoe Edwards at 916-927-9113, extension 75201 or e-mail zoe.edwards@nmss.org
GENTLE YOGA FOR MS Add a weekly gentle yoga class to your routine and stay active! Manteca Thursdays, 11:00am – 12:00pm Brain & Body Yoga & Tai Chi Studio 1236 N. Main St, Suite B, Manteca Contact: Kamal at 209-824-9642 Modesto Tuesdays, 10:30am – 11:30am National MS Society Office 422 McHenry Ave, Modesto Contact: Richard at 209-380-5955 Oakland Tuesdays, 10:00am – 11:00am Redwood Heights Recreation Center, 3883 Aliso Ave, Oakland Saratoga Thursdays, 10:30am – 12:00pm Prince of Peace Lutheran Church Wellness Center 12270 Saratoga Ave, Rooms 5 & 6 Saratoga Contact: Thea at 408-489-9436 Turlock Thursdays, 11:00am – 12:30pm I Am Yoga Wellness Studio 2031 Geer Rd, Turlock Contact: 209-667-8100 (Studio)
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YOGA IN CHICO
Tom from the Yoga Center of Chico will be leading this free special yoga session for people living with MS. Props and yoga mats will be provided (but please feel free to bring your own.) This is a great opportunity to refresh, focus your mind and reap the benefits that yoga has to offer. It doesn’t matter if you are a veteran yogi, new to yoga or have limited ability; the class is structured for all ability levels. Don’t miss this special opportunity! Chico | November 13 | 12:00pm Yoga Center of Chico, 250 Vallombrosa Ave #150
LIVE FULLY, LIVE WELL
A Counseling Group for Newly Diagnosed Berkeley | Tuesdays, Oct. 25 -Dec. 13 7:00pm - 8:30pm Sutter East Bay Medical Foundation, Community Room, 2500 Milvia Street This group will enable participants to express how they have been affected by MS and allow them to develop strategies to live well with MS. Participants will have an opportunity to learn about both psychological and physical wellness, develop an individualized wellness plan, and find personal strength to overcome obstacles. The group is open to those who have been diagnosed with MS for less than three years and will be led by a licensed therapist. Presented by:
WEBINARS
Together in MS: Supporting Family and Friends of People with MS October 11, 2016 | 5:00pm Join psychologist Rosalind Kalb, PhD and occupational therapist Juliann Hanson-Zlatev, OTR as they respond to your questions and concerns while sharing real life scenarios pertaining to the challenges and struggles of support partners and their loved ones. This webinar will provide a unique opportunity for support partners and the person living with MS to adopt skills, strategies, and tools needed to live together fully with this chronic, unpredictable disease. Diet & MS: A Neurologist’s Perspective November 8, 2016 | 5:00pm As the relationship between diet and MS continues to be researched, Dr. Pavan Bhargava has emerged as the foremost expert on the topic, and will be the featured speaker on November 8 as part of our Webinar and Telelearning Series. In addition to explaining the impacts that our diet has on MS and offering evidence around some popular dietary strategies, Dr. Bhargava will answer your questions and guide you to make healthy eating choices that will benefit you and your MS!
To register for a program, visit nationalMSsociety.org/CAN and select the Calendar, or call (800) 344-4867.
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SELF-HELP GROUPS
CONNECT WITH OTHERS PLEASE CONTACT THE GROUP’S FACILITATOR(S) TO LEARN MORE ABOUT A SPECIFIC SELF-HELP GROUP LISTED BELOW OR CONTACT THE CHAPTER AT 800.344.4867.
BAY AREA • Alameda - Sharon: 510-521-6260, Ray: 510-522-5210 • Antioch - Sue: 925-813-9069 • Berkeley: Lunch Group (meets periodically) - Toni: 510-653-4534 • Brentwood: MS Lunch Bunch - Kathy: 925-286-7674, Julie: 925-513-4686 • Corte Madera - Vicki: 415-892-7370, Anita: 415-892-5548 • Dublin - Sunshine: 925-216-3255 • East Bay Community Group: MS Fight Club - Stacey: 510-332-7393 • East Bay: Lesbians - eastbaymsgroup@gmail. com • El Cerrito - Thad: 510-528-8540 • Foster City - Eli: 650-377-1970 • Fremont - Marie: 510-520-7276 • Mt. Diablo (Concord) - Cindy: 925-2653184, Jan: 925-372-0859
• Oakland: Latinos Bilingual Group (Se habla español) - Elsa: 510-777-1414 • San Francisco: UCSF MS Self-Help Group – Andrew: 415-230-6678, ext. 73004 • San Francisco: Young at Heart Group George: 415-724-0064, Ann: 415-573-8949 • Walnut Creek - Jodi: 925-708-9387, Ché: 216-225-6508 NEW GROUP!
AT-HOME TELEPHONE GROUP
CENTRAL VALLEY • Manteca - Rebecca: 209-505-6438, Lorna: 209-815-8820 • Merced: MS Challengers - Susan: 209631-7279 • Modesto - Marti or Jane: 209-521-8956 • Stockton (AM) – Laurie: 209-915-1730, Velma: 209-951-2264 • Stockton (PM) – Brenda: 209-951-0536, Mary: 209-334-5670 • Tracy – Linda: 209-833-6882 • Turlock – Frances: 209-883-3526
• Oakland - Katrina: 510-523-1891 • Oakland: African Americans - Karen: 510-757-3290
New Self-Help Groups coming soon in Napa, Yreka and Redding! Contact Amy Clark at amy.clark@nmss.org or 415-230-6678, ext 75207 for more information!
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SELF-HELP GROUPS
GREATER SACRAMENTO • Auburn - Loreen: 530-320-1711, Ruth: 530-888-8388 • Carmichael: Moving on with MS Michelle: 916-600-1958, Kara: 916-3909480, Denise: 916-771-4413 • Elk Grove - Letitia: 916-896-7764, Dorothy: 916-684-6849, Willie: 916-6841677, Pamela: 916-685-6662 • Grass Valley - Erica: 530-559-4517 • Jackson - Joanne: 209-304-1480 • Lincoln - Jeri: 916-408-7565 • Placerville - Doris: 530-622-5673 • Sacramento: MS Adapters - Kim: 916821-6133, Stephanie: 916-215-5356, Debbie: 916-837-2019 • Sacramento: MS Musings of the Mind Writing Group - Irene: 916-993-6778 • Sacramento: Yoga and Tai Chi Support Group - Cynthia: 916-682-9030, Evelyn: 916-391-1365 • Vacaville - Marian: 707-580-0112 • Woodland - Shannon: 916-821-3576
NORTH STATE • Chico - Amy: 530-863-7818, Tracy: 530343-3623 • Eureka - Ann Louise: 707-839-0177, Kim: 707-445-9803 • Guerneville - Kristina: 707-217-0289 or 707-604-6199 • Petaluma – Connie: 707-631-2336 or mspetalumagroup@gmail.com NEW GROUP!
• Sonoma - Susan: 707-800-7837, Debbie: 707-548-8437. The Sonoma County MS Group is recruiting new board members! Please contact Melinda DeMetri at 707849-0695 or mels_dragon@yahoo.com for more information. • Yuba City - Evon: 530-701-2189
SOUTH BAY • Capitola - Jon: 831-332-5265, Estefana: 831-406-9127 • Hollister Group - Joann and Andrew: 831-630-0266 • Monterey - Veronica: 831-869-1684 • Monterey: Young, Strong & Fighting On (under 40) - Nikki: 760-902-2431 NEW GROUP! • Palo Alto - Kathy: 408-921-9888 • San Jose - Marie: 510-520-7276 • Santa Clara - Susan: 408-253-4489, Bruce: 408-978-9648 • Santa Clara Living Well Group - Elise: 408-314-1261
ONLINE • Online: Second Life - John: 916-708-9708 Are you interested in volunteering with the Northern California Chapter of the National MS Society? Becoming a Self-Help Group leader is a great way to get involved and give back to your community! If you have never led a group, that’s okay - training and guidance will be provided. We are currently seeking leaders in Santa Rosa, Lodi, and Calaveras. If you are interested in the Santa Rosa groups please contact Amy Clark at 415-230-6678 ext. 75207 or amy.clark@ nmss.org. For Lodi or Calaveras, please contact Andrea Covolo at 209-214-6022 or andrea.covolo@nmss.org
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ADVOCACY
VOTING WITH MS BY LAUREN SHRYNE
I have voted in every national election, and most state and local elections, since I turned 18. I’ve stood in lines outside of schools, courthouses, firehouses and retirement homes, eager to register my stance on candidates and issues that were important to me. I believe that voting is the most important way that we participate in the democratic system, and my belief in its importance has only gotten stronger since I was diagnosed with multiple sclerosis in 2014. The many hurdles, both practical and emotional, that a person with a disability might face when trying to exercise their right to vote only became apparent as I faced them myself: losing the ability to walk to school, as after half a mile I found myself tripping and dizzy; becoming unable to summon the strength in my right hand to sign a receipt for my coffee; failing to recognize friends passing on the sidewalk as my vision blurred; missing meetings and blanking on names as my memory became unreliable. And I was very, very tired. At the height of an MS flare, when performing basic, necessary tasks requires momentous effort, voting might cede to more immediate concerns. But government can help by ensuring that polling places are accessible, by providing and maintaining accessible voting equipment,
LAUREN SHRYNE Our voices are important It’s important that people with disabilities exercise their right to vote as fully as the general population. Currently, more than 1 out of 7 eligible voters have a disability; yet, the turnout rate of people with disabilities is nearly 6 percent lower than other Americans who are eligible to vote. At nationalMSsociety.org/voterinfo, learn your voting rights, including your protections under the Americans with Disabilities Act; how to register, including online; and how to ensure that your polling place is accessible to you. Remember that currently in 30 states citizens must comply with voter identification laws when voting in person — find out ahead of time what’s required in your state.
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and by making sure that anyone who seeks
information on how to vote can easily find it.
That’s where the U.S. Elections Assistance Commission (eac.gov) comes in as the primary resource for information regarding voting in the United States, including specific resources for voters with disabilities. Recently, I had the opportunity to attend a meeting and training for a nationwide campaign to get out the disability vote — thereby harnessing our community’s power to influence decisions of particular importance to us, like social security, Medicare, healthcare, affordable housing, accessible transportation, employment and funding for MS research. In that first meeting, we discussed the potential power of the disability vote and the challenges that we face in exercising that power. But it all starts with a simple first step: registering to vote. Though facing an incurable and unpredictable disease like MS is difficult, learning to advocate for myself and for others with MS has been profoundly empowering. Volunteering as an MS activist has encouraged me to educate my legislators about MS and urge them to support measures that make a real difference in the lives of people with MS. Now, by participating in a voting campaign, I help others in our oft-overlooked community to feel empowered to register their opinions and, hopefully, influence the political conversation. First, though, we have to show up. Register to vote! Go to nationalMSsociety.org/voterinfo to learn how.
Lauren Shryne’s involvement with the National MS Society focuses primarily on volunteering with the Government Relations Committee near where she lives in Somerville, Massachusetts, through which she connects with her elected representatives to support legislative initiatives that are important to people with MS. She is a lawyer, and voting really is one of her favorite things. n
Get close to voting One way to join in the action is to be where the action is. Which is why Karen Kostelac, diagnosed with MS two years after casting her first vote, decided to go “all in,” working at polling locations, sometimes for more than 14 hours at a time. “I’ve helped people with everything from vision impairments to gait problems,” she says. She recommends that people living with MS take advantage of early voting accommodations. “The opportunity to vote early gets people in the door so they can take the time they need without being fatigued by long lines.” And don’t forget that activism doesn’t stop with voting — or an election. “Don’t forget to keep in touch with your elected officials,” says Kostelac. “Let them know that you are out there, you are following them, and that you’re an MS activist!” Visit nationalMSsociety.org/ MSactivist to get involved.
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NOVEMBER IS NATIONAL FAMILY CAREGIVERS MONTH!
RESOURCES
We recognize the loving efforts of family caregivers all year long; however National Family Caregiver Month, designated in November, is a special time to educate, raise awareness around caregiver issues and celebrate the vital role they play. A number of California nonprofits and agencies focus on offering core services to family caregivers ranging from counseling services to legal/financial consulting at low or no cost. Family Caregiver Alliance 785 Market Street, Suite 750, San Francisco (415) 434-3388, (800) 445-8106 (toll-free) www.caregiver.org Del Mar Caregiver Resource Center 1537 Pacific Avenue, Suite 300, Santa Cruz (831) 459-6639, (800) 624-8304 www.delmarcaregiver.org Del Oro Caregiver Resource Center 8421 Auburn Boulevard, Suite Citrus Heights (916) 728-9333, www.deloro.org
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Passages Caregiver Resource Center 25 Main Street, Suite 202, Chico (530) 898-5925, (800) 822-0109 (regional) www.passagescenter.org Redwood Caregiver Resource Center 1140 Sonoma Avenue, Suite 1B, Santa Rosa (707) 542-0282, (800) 834-1636 (regional) www.redwoodcrc.org
Caregiver Support with Self-Help Groups MS happens to families, not just to individuals. When a person is diagnosed with MS, there is immediate impact on all who love them. Family members experience similar emotions to adapting to MS in their lives as the person with MS. Spouses and partners, family, and friends can be drawn more closely together by their shared concerns and collaborative efforts. But being a care-partner can also be physically and emotionally exhausting, particularly for the primary care-partner. Meet and chat with others that love someone with MS too. Light snacks and drinks will be provided. Modesto | October 8 | 10:00am National MS Society, Modesto Office 422 McHenry Ave., Modesto, CA 95354 Santa Rosa | October 10 | 12:00pm Round Table Pizza. 2065 Occidental Rd Santa Rosa, CA 95401 Chico | October 3 | 5:30pm Enloe Rehab Center, 340 W. East Ave Chico, CA 95926
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NATIONALMSSOCIETY.ORG/CAN | 1-800-344-4867
DUSKBUSTER MS & WALK MS
DUSKBUSTER 5K
On June 8, 2016 hundreds of runners, walkers, and volunteers gathered at Little Marina Green in Crissy Field for the Duskbuster 5K Happy Hour Run/Walk. Kicking off after work, runners and walkers enjoyed a 3.1 mile jaunt along the beautiful Marina, followed by a happy hour celebration. This year, the event raised more than $20,000! Congratulations to our top fundraiser Caroline Fairchild and our top fundraising team, Team Fairchild! We’d also like to congratulate our fastest runner, Evan Sparling, who finished the course in 16:55. n
! G N I R P S T X E N S U N I JO
ODAY T R E T S I G E R ORG! . S M K L A W AT 2017 24, 29 & 30, IA
APRILIO2N3S,IN NORTHERN CALIFORN
13 LOCAT
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MS CONNECTION: WINTER 2016/2017
BIKE MS
WAVES TO WINE IS ALMOST HERE! In just a few days, thousands of cyclists, volunteers, family, and friends will gather in locations throughout Northern California to show the world that we are stronger than MS. Riding hundreds of miles and raising millions of dollars, these dedicated individuals become one team determined to change the world for everyone affected by this disease. Chris Culkin of Team Salesforce & Friends is one of those cyclists.
After his mom was diagnosed in April 2010, they immediately turned to the internet to find answers to their questions. Browsing through the National MS Society website, Chris found a link for Bike MS: Waves to Wine and signed up that day. “I bought a cheap $100 bike and set my goal for $1,000,” said Chris. A cycling rookie, Chris spent three months training and learning to ride. Six years later, Chris has joined Waves to Wine’s top fundraising team, Salesforce & Friends, and, as a member this year, he’s set some lofty fundraising goals. “This year, I wanted to reach the $3,000 mark by my 30th birthday,” Chris said. “I asked my friends and family to help make this birthday wish come true, and one of my colleagues here at Salesforce actually gave the donation that put me over $3,000.”
As Chris continues to fundraise, he also looks forward to the event itself. “Each year’s experience is a little different and much more personal,” he said. “I see my mom work through her MS daily and what it means for her. Bike MS allows me an opportunity to reflect on what my journey is in dealing with is and consider this ‘gift’ of movement. I feel very humble being able to ride.” Although Chris is riding for his mother, “Mama Culkin,” she also takes part in the event, dropping her son off at Cow Palace early Saturday morning and cheering at the finish line at Sonoma Mountain Village. Seeing his mom at the finish line and hundreds of people on the route wearing “I Ride with MS” jerseys is inspiring to Chris. “Because I can help raise these funds, I can assure that people with MS can find the support and help they need,” said Chris. And that’s exactly what Chris and his team are doing: changing the world for people affected by MS. You can follow all the Bike MS: Waves to Wine fun on September 24 & 25 at www.facebook. com/wavestowine or www.wavestowine.org. n
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NATIONALMSSOCIETY.ORG/CAN | 1-800-344-4867
WAYS TO GIVE
DEAR SCHOLARSHIP DONOR BY SYDONNIE MCMILLIAN
It is with eyes full of tears and a heart full of gratitude that I write this letter. I am a 35-year-old mom of two children, Jason and Jocelyn. When they were born, I was working while pursuing a degree in business administration. However, when my youngest was about six months old, I was taking her for a walk when my legs began to feel heavy and I fell. I began a two-year journey of testing and seeing specialists, with no answers until I was diagnosed with multiple sclerosis in 2012. I knew my children were growing up. They were so full of life and I felt like my life was being sucked from me one nerve cell at a time. I continued with school, but I could not work anymore. Then, even with Social Security Disability Insurance, I could no longer afford school. My financial aid and loans had run out and, as I wasn’t working, my credit was not good enough to secure a private loan. My school could only offer a payment plan. I convinced myself that I didn’t need a degree because my life was now going to be centered around MS. But I knew in my heart that I wanted that degree, and that I wanted to start a business from home that might possibly be a charity for people with disabilities due to autoimmune disease. So
SYDONNIE WITH JASON (L), NOW 6, AND JOCELYN (R), NOW 4. when I opened the letter yesterday saying I had been awarded a scholarship from the National MS Society, I nearly fell to the floor (and not because of a relapse!). If paper could talk, you would hear my screams of happiness. I want to share with my children that there are still amazing people in this world and that their mom just encountered some of that greatness. I have such joy and hope in my heart right now because getting my degree was something I didn’t think was possible and now, because of you, it is possible. With the biggest heart, I thank you.
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Scholarship applications for the 2016-2017 school year are opening in October 2016. For information on how you can support Society Scholars like Sydonnie, visit nationalMSsociety.org/scholarship or call 1-800-344-4867.
Northern California Chapter 1700 Owens Street, Suite 190 San Francisco, CA 94158
San Francisco | Saturday, October 1, 2016
San Franc
Solano County Fairgrounds, 900 Fairgrounds Dr., Vallejo, CA 94589
Solano County F
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