Spring 2015
northern california chapter
Photos by Hot New Design & Photography by Christina Ray
MS connection newSletter “we want to challenge ourSelveS through an equeStrian partnerShip, JuSt aS thoSe with MS challenge theMSelveS daily.” -- brenda Strait
a “tail” of achieveMentS
In October 2014, a group of women, known as the Country BabyGirls, decided to merge their love of horses and their desire to raise awareness and money for MS, creating the NorCal Equestrian Challenge for MS as part of the Society’s Do It Yourself Fundraising program. The Equestrian Challenge challenges riders to a 10 or 20 mile trail in a single day. After the ride, participants gather for a celebratory potluck dinner. In its inaugural year, the event raised almost $15,000!
Participant Richard Walker, diagnosed in 1988, began riding horses 14 years ago in a program implementing Hippotherapy (therapeutic horse riding). His horse, Daisy, has opened up new possibilities for Richard, who experiences balance issues and walks with a cane. “Daisy provides my legs for me so I can stay active and enjoy outdoor activities,” said Richard. “It’s so amazing how she seems to know, understand, and take care of me.”
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inSide 04 thiS iSSue
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prograMS & ServiceS
volunteer heroeS
don’t JuSt ride, bike MS
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MS connection: spring 2015
letter from the president
living your best life
Living well with MS requires you to be the driving force in your health and wellness. We’re here to help. If your New Year’s resolutions have taken a back seat, Spring offers you the opportunity to take charge and get connected with others.
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
Spring also marks the beginning of our annual fundraising event season and how you engage truly matters. Whether you connect as a participant in Walk MS, Bike MS or MuckFest; as a stellar fundraiser who is unable to directly participate but rallies their personal community to raise funds so that people with MS live their best lives; as a volunteer who offers unparalleled support; or as donor who is connected to MS because of someone you love—all of the ways we’re connecting make a difference. Together, we make the MS community a vibrant, passionate, and hopeful place to be. For the last 32 years, part of every single dollar raised from events has helped people overcome the daily challenges of living with MS, while another portion has furthered research into stopping MS progression, restoring function that has been lost, and ending MS forever. When we launched our first event, there were no disease modifying drugs. Today there are twelve. How you contribute to the mission (such as through horseback riding, page 1) or make an impact (by lending your voice to become an MS Activist, page 12) is up to you. Just as MS is different for every person, there is a different way for each of us to connect and move closer to a world free of MS. I know we will get there faster and with greater impact when we do it together. Take action this Spring to live your best life. Warm regards,
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norcal equestrian challenge continued from page 1 Organizer Brenda Strait’s desire to make a difference is fueled from a personal connection: her husband, Earl, has been living with the disease since 1988. “Each day those affected by MS are challenged by some of the simplest tasks: walking, talking, functioning without pain and fatigue,” said Brenda. “Through the years my husband has always confronted these challenges with confidence and optimism, which inspired me to take up the challenge to cure this disease through fundraising with my other passion; horses! Shemar Moore, the Criminal Minds team, and the SoCal Bike MS: Coastal Challenge event
Photo by UL Simmons Photography
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: Emily Hazlett © 2015 National MS Society, Northern California Chapter; Published Quarterly—Spring 2015
gave me the idea to create the NorCal Equestrian Challenge for MS.” The NorCal Equestrian Challenge for MS is already planning a spectacular event for October 3, 2015. “We want to invite more people to join us this year, and encourage people with MS to come out, too,” said Richard. The 2015 ride will incorporate a special I Ride with MS program for people with MS that will include pre-event and day-of support, helpful hints and preparation, and on-event recognition. Learn more about the NorCal Equestrian Challenge for MS at www.ec4ms.org. n
Photo by Hot New Design & Photography by Christina Ray
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.
04 research
research leads in MS Significant research progress was made in 2014, offering new leads that are driving efforts to stop multiple sclerosis, restore lost function, and end MS forever. Here are some highlights:
STOPPING MS • A National MS Society-funded team shed new light on immune cells known as macrophages, discovering a way to tell the difference between good and bad types of these immune cells in mice with an MS-like disease. This research opens up possibilities for therapies that target bad cells and spare good cells. • The U.S. Food and Drug Administration approved Plegridy (peginterferon beta-1a, Biogen Idec) and Lemtrada (alemtuzumab, Genzyme, a Sanofi Company) for people with relapsing forms of MS. This means there are now 12 disease-modifying treatment options for those with the most common form of MS. • In a multicenter study, African Americans with MS were found to have more visual impairment and faster thinning of the nerve fibers in the back of the eye than Caucasians with MS. • Researchers in the U.K. found that for every year that passed after a person with MS stopped smoking, the risk for progression was reduced by as much as five percent.
MS connection: spring 2015
For people with progressive MS, a number of studies provided promising results: • A phase 2, placebo-controlled clinical trial of high-dose oral simvastatin (a medication used for high cholesterol) involving 140 people with secondaryprogressive MS suggested that this pill was able to slow the rate of brain tissue loss over two years. • An international team funded by the Society found that levels of vitamin D in serum early in the course of MS may predict later disease activity and progression. • T he International Progressive MS Alliance awarded its first round of 22 research grants – the start of an ambitious program that will invest at least $30 million over six years. • The Society is funding clinical trials of nervous system-protecting approaches including a phase 2 trial of ibudilast in 250 people with progressive MS. • Innate Immunotherapeutics leveraged Society commercial seed funding to launch a clinical trial of a treatment for progressive MS. • Society-funded researchers at the University of Alabama at Birmingham found that weakness was improved and brain tissue increased significantly in 20 people with progressive MS under constraint-induced movement therapy (immobilizing a favored arm, forcing the weaker arm to do exercises and skilled movements). A larger trial is underway.
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RESTORING LOST FUNCTION
ENDING MS FOREVER
A number of potential MS therapies that hold the possibility of myelin repair moved forward in clinical trials, including an approach that tested the ability of an individual’s own mesenchymal stem cells to inhibit immune mechanisms and augment intrinsic tissue repair processes when infused into the veins of people with relapsing forms of MS.
• In studies involving over 80,000 people, the International MS Genetics Consortium identified more than 159 genetic variations related to MS.
In addition, there were positive results from a number of lifestyle and wellness-related studies, as follows: • A clinical trial showed strong evidence that a specific type of memory training improves learning in people with MS and benefits other aspects of quality of life. Additionally, a pilot study revealed that clinical and MRI improvements were maintained six months after training ended. • In a preliminary study of a salsa dance program for people with MS, researchers found improvements in gait and balance even three months after the 4-week program ended. The Society is now funding a larger, longer study that may lead to the use of dance as physical therapy for MS. • The Society convened a Wellness Strategy Meeting with leaders in the fields of diet, exercise and psychology, including individuals who also directly live with MS, to identify gaps in knowledge and programming and to map out next steps for how these gaps might best be addressed.
• Collaborators at Yale, MIT, Harvard and elsewhere reported a new approach to understanding how subtle changes in genes may lead to the risk of developing MS and other immune diseases. • Researchers in Sweden and California showed that adolescent obesity increased the risk for MS, and that this risk increased substantially in those with specific immune genes. • Investigators found that those who reported taking cod liver oil at ages 13-18 had nearly half the risk of developing MS compared to those who never took cod liver oil or took it at other ages. n To keep up to date on the latest MS research, visit www.nationalMSsociety. org/research or sign up for MS eNEWS at www.nationalMSsociety.org/signup.
our commitment to research Our annual research investment continues to grow. In 2014, we funded $50.6 million in research, and have committed $52.3 million in 2015! Our goal to reach $250 million in research funding will be accomplished by 2016. What are our priorities in 2015? We continue to focus on finding solutions for people with progressive MS; restoring and repairing function; and understanding genetic and environmental factors in MS.
06 money matters
finding support through terry’s closet They say “a mother’s job is never done,” which couldn’t be more true for Teri, a mother of two sons, Miguel (aka Mikee) and John (aka Johnny), who are bed bound due to MS. Earlier this year, Teri and her family were faced with an extremely difficult decision. Mikee and Johnny’s restricted lifestyles were no longer sustainable in their current beds, and both men were living in pain and discomfort. If at-home solutions could not be found, Teri would be forced to move Mikee and Johnny to a nursing home, away from the family. In 2014, Teri reached out to the National MS Society, hoping to find answers and recommendations for next steps. Through the Society’s special fund for durable medical equipment, Terry’s Closet, Mikee and Johnny were able to get two hospital beds and have them installed in their home. “Thank you so much for making it possible for Mikee and Johnny to get their beds. Mikee was struggling with so much pain and his new bed feels like he is lying on a cloud,” said Teri. “Johnny’s new bed allows positioning that improved his ability to eat and reduced his susceptibility to aspiration pneumonia. We are so grateful to Terry’s Closet.”
MS connection: spring 2015
Terry’s Closet was developed to bring meaningful financial assistance to as many people living with MS as possible, with emphasis on helping people maintain their independence, safety, health and quality of life. The special fund is named in honor of Terry Rossman, who lived with MS and passed away in 2007. Her legacy and dream to rid the world of MS and improve the quality of life for those impacted by MS lives on. Terry’s Closet is funded by the MS Golf Experience, which raised over $14,000 in 2014. The program has helped 48 families during the last year, connecting them to the durable medical equipment they need to keep life moving forward. n
2015 ms golf experience Friday, May 8, 2015 Lincoln Hills Golf Club, Lincoln, CA The MS Golf Experience is back in 2015! Join us for a shotgun scramble, fun contests, raffle, live auction, and silent auction. All funds raised through this event will support Terry’s Closet, a financial assistance program of the National MS Society, Northern California Chapter. For more information, please visit www.MSGolfExperience.com.
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volunteers
heroes of the month Francesca Smith has been volunteering for over five years, managing volunteer teams at Bike MS, Walk MS, and now MuckFest MS. “As a long-time volunteer with the Chapter, I was excited to volunteer at our first MuckFest MS,” said Francesca. “It was the most energizing event you can imagine! As much as I love volunteering for Bike and Walk, now I’m in love with MuckFest and can’t wait for next year.” Bill Hertan has been the Chapter’s go-to Medical Lead for Bike MS: Waves to Wine and Walk MS for five years. “I volunteer because I like the events and helping others,” said Bill. “I have two friends with MS and have seen what it does to people. I want to help find a cure.” Alexis & T. Taylor have volunteered for the Chapter for several years, recruiting and managing the trucks and trash/recycling at Bike MS: Waves to Wine. “A world where MS can be beat, or where it does not exist, would be the world I want for my girls and their future generations,” said T. Together, Alexis and T. volunteer to show their devotion to finding a cure for MS. n
listen & learn MS and Employment - The Essential Guide to Flexible and Home-Based Jobs Thursday, March 26, 5:00pm PST What are the latest trends in the work-fromhome and flexible job market? Brie Reynolds from Flexjobs.com, will walk participants through the trends, top career fields and most common jobs available, who’s hiring, and how to find these flexible opportunities. Learn how to avoid common job scams and tips for successful job applications.
Sex Ed for grownups - intimacy in ms Tuesday, May 19, 4:00pm PST Thursday, May 21, 7:00pm PST MS can certainly change a romantic relationship – learn from Dr. Timothy Hlavinka, Urology San Antonio and Dr. Linda Mona, VA Long Beach how to maintain or build intimacy now that MS is in the picture. RSVP today at www.nationalMSsociety.org/ telelearning or call 800-344-4867.
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MS connection: spring 2015
advocate for change
2015 state unified policy agenda The Multiple Sclerosis California Action Network (MS-CAN) Public Policy Agenda for 2015 includes our top legislative priorities of health care transparency and network adequacy.
SB 26 (Hernandez) California Health Care Cost and Quality Database: Legislation which requires health plans and insurers, to provide specified information for the purposes implementing the database. The database will put provider cost and performance information into the hands of consumers and purchasers so that they can understand their financial liability and realize the best quality and value available to them. SB 137 (Hernandez) Provider Directories: This bill establishes requirements on health plans and health insurers to make updated provider directories available on their website and provide information about their contracting providers, including those who are accepting new patients. AB 339 (Gordon) Outpatient Prescription Drugs: The objective of AB 339 is to assure that medically necessary prescription drugs are affordable and accessible. The bill would prevent those health care plans and policies from placing prescription medications that treat a specific condition on the highest cost tier of a drug formulary and would require the Department of Managed Health Care and the Department of Insurance to create a definition of “specialty prescription drugs.� n
Get Involved!
Join the MS Activist Network by visiting www.nationalMSsociety.org/advocacy. You can also email Public Policy Director Stewart Ferry at stewart.ferry@nmss.org and follow him on Twitter at @CA_MSactivists.
advocacy 101
Learn about tools and resources to influence and effect real change in public policy. Register at www.nationalMSsociety.org/advocacy101.
LEARN HOW YOU CAN ADVOCATE FOR CHANGE
Advocacy 101 WEBINAR
THUR, MAY 14
6:30 pm PST
nationalmssociety.org/can | 1-800-344-4867
walk ms
magnificently sexy “Imagine you wake up and your leg is asleep, only the feeling won’t go away. You’re limping, but you didn’t hurt yourself. You figure it’s not that big a deal, so you carry on with your day. Thinking the feeling will go away on it’s own, it finally does a month later...”
An eye-opening message posted on Elise Wada’s fundraising page tells her personal story of living with MS, and reminds donors why events like Walk MS matter. A member of a 20’s and 30’s self-help group, fittingly named “Magnificently Sexy,” Elise and her teammates are coming together to raise money for Walk MS. some of elise’s (not pictured) magnificently sexy teammates
13 It’s not too late to register and start a team for Walk MS at one of our Northern California events. All participants enjoy a fun-filled day, with a 5K or 1 mile walk, roll or stroll around one of our 13 beautiful Walk MS event sites. Food, music, games, giveaways, and more await you at the finish line. Participants who fundraise can also earn great prizes and recognition at their event. Walk MS connects people living with MS and those who care about them. When you participate in this community event, the funds you raise give hope to the more than 2.3 million people living with MS worldwide and fuels critical research to stop the disease, restore function that has been lost and end MS forever. Visit WalkMS.org to get started, or call 855-372-1331. n
register today! visit walkms.org or 855-372-1331 April 18, 2015 Central Valley, Downey Community Park, Modesto East Bay, Lake Merritt, Oakland 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, Old Town Plaza, Suisun City 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
14 bike ms
an inspired ride By allyce morino
Rob Wellner was living in New York City when he began experiencing extreme vision problems and was diagnosed with relapsing-remitting MS in 2009. He knew he wanted to learn more about MS, and after moving to San Francisco in 2011, was introduced to Bike MS: Waves to Wine by a friend. Already an outdoorsman, Rob was inspired to get involved in the event. Rob first participated in Waves to Wine in 2012 and took 2013 off following exacerbated MS symptoms, returning to the ride in 2014. “It meant a lot this past year, after facing health challenges in 2013 and early 2014,” said Rob. “Support was critical and motivated me to reach out and raise money. Encouragement from my friends really meant a lot to me.” Rob’s favorite moments from Waves to Wine 2014 include finishing the ride on Saturday and feeling a sense of accomplishment. “The support along the way is second to none. Whether it’s people at aid stations or on the side of the road, I am thoroughly impressed each year.” Rob raised $11,880 in 2014 and credits his fundraising to sharing his story with others. “I explained how much
MS connection: spring 2015
donating would mean, and that it’s an experience and opportunity to participate in something much bigger than them.” Rob’s fundraising brought an invitation to attend the Society’s National Conference in Ft. Worth, TX, which was his best experience since his diagnosis. “I was moved by all the people involved: doctors, volunteers, people in the Society, and other people who have MS. It moved me so much that I’ve thought about getting involved at a higher capacity.” Since the conference, Rob has met with two women who were recently diagnosed with MS to share his experiences and offer support. “If we keep up the events, we’re going to bring more awareness. There are a lot of unknowns of MS.” Rob plans to continue participating and spreading the word about Waves to Wine. “I’m aware that I can be a great service to people with MS by sharing my experience, strength, and hope with them. I’ve had the opportunity to do that and it puts people at ease.” n Register today for Bike MS: Waves to Wine, September 26 & 27, 2015! With route options on Saturday of 20, 50, 82 or 100 miles and Sunday options of 40 or 75 miles, Waves to Wine is appealing to a variety of fitness levels. This fully supported ride includes six meals, stocked rest stops every 12 to 15 miles, support vehicles, optional camping, and a festival area featuring a wine and beer garden. Register today at www.wavestowine.org or call 855-372-1331!
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get involved
Join the MoveMent Check out other upcoming events in Northern California:
duSkbuSter
5K Happy Hour Run/Walk June 10, 2015 | 7:00pm Marina (Crissy Field), San Francisco We’re redefining happy hour! Take a mid-week evening break and join the movement to create a world free of MS. Starting in the Marina at Crissy Field, the route includes sweeping views of the bay and the Golden Gate Bridge. This event is great for running teams, corporate teams, casual joggers, walkers, families and more. Gather a group and join us afterwards for our post-race celebration. Learn more and register at www.duskbuster.org.
2nd Annual MS Million $hootout August 21, 2015 San Geronimo Golf Course San Geronimo, CA
Net proceeds from MS Million $hootout are directed to the National MS Society, helping to fund critical MS research.
finiSh MS
Rock ‘n’ Roll San Jose Half Marathon September 27, 2015 | 8:00am S. Market @ San Salvador St, San Jose Get ready to rock, roll, and raise funds for MS! Help us finish MS and register for this rockin’ half marathon. Once you reach the $500 fundraising minimum, we’ll secure your spot in the race! Learn more at www.finishMS.org.
MuckfeSt MS San franciSco 5K Mud Obstacle Run October 10, 2015 | 9:00am Solano County Fairgrounds
MuckFest MS is the fun mud and obstacle 5K for everyone. If you can laugh, you can do it. Have a blast on mountains of mud and 15+ outrageous obstacles that will spin, swing, and fling you and your teammates up, down, and sideways. Learn more and register at www.muckfestMS.com.
Enjoy a spectacular day of golf and fun with 18 dramatic par three holes, a short game clinic, lunch, dinner, raffle, silent/live auctions, and a shootout for one million dollars. For more information or to register, visit www.TPWGolfEvents.org or call Willie at 415-521-6663 today!
1700 Owens Street, Suite 190 San Francisco, CA 94158
CARLSBAD TO SAN DIEGO: SEPTEMBER 25-27, 2015
3 DAYS
50 MILES A WORLD
FREE OF MS
Enjoy an all-inclusive weekend that travels the beautiful coastline of Southern California. Enjoy comfortable accommodations at the Marriott, all while experiencing the journey of a lifetime.
MYMSCHALLENGE.COM