Spring 2014 MS Connection Newsletter

SPRING 2014NORTHERN CALIFORNIA CHAPTER

MS CONNECTION NEWSLETTER

INSIDETHISISSUE

08UPCOMING PROGRAMS AND EVENTS

14WALK MS IS FOR ALL MOBILITY LEVELS

03NEW SOCIETY WEBSITE UNVEILED

05JOIN THE GOLDEN CIRCLE

As we embark on a busy political season, the Northern California Chapter needs your help to encourage change on key policy issues affecting people living with MS. There is no shortage of issues that MS Activists are seeking to address, from timely access and affordable and comprehensive care, to the cost of prescription drugs and greater home and community-based long-term care services. We have the data and facts to make effective presentations to key decision makers but we need to personalize our approach.

Personal Stories Create Connections“Our goal is to tell personal stories of people living with MS because stories can inspire legislators to remove barriers and solve problems,” said Stewart Ferry, statewide Director of Public Policy for the National MS Society. “Our job as MS Activists is not simply to relay facts and figures about the disease, but rather to make MS and its effects real for the legislator or policymaker. Statistics will help legislators understand the substance of

an issue, and compelling personal stories will create an emotional connection. They provide the heart of the issue.”

Telling Her StoryMS Activist, Melanie Rowen shared a powerful personal story about the high costs of MS therapies. As a young San Francisco attorney

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THE POLITICAL POWER OF YOUR PERSONAL STORY

WHEN MS ACTIVISTS TELL THEIR STORY, THEY CREATE MEANINGFUL CONNECTIONS WITH KEY POLICYMAKERS

CONNECT WITH US:1-800-344-4867 NationalMSSociety.org/can [email protected]

Like us: /msnortherncal

Follow us:/msnortherncal

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MSConnection.org

02 MS CONNECTION: SPRING 2014

“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.”

LETTER FROM THE PRESIDENT

SPREADING MS AWARENESSDear Friends,

Creating a world free of MS requires a collaborative effort. Earlier in March as part of MS Awareness Week, we asked individuals and MS groups across the country to unite and raise awareness. This year, the annual awareness campaign provided an opportunity to share your “I Connect” image and story at www.MSconnection.org. We encourage you to view the thousands of connections made and see the overwhelming support people gave one another.

During MS Awareness Week in cities coast-to-coast, people hosted and attended community events that raise funds to drive MS research. We shared our stories of life with MS through social media, in letters to the editor and in news stories. The US Senate adopted a resolution expressing support for the goals and ideals of MS Awareness Week, and the Society received a Presidential Message honoring people with MS.

This month over three-hundred MS Activists gathered in Washington DC for the Society’s annual Public Policy Conference. While there, they made personal visits on Capitol Hill to advocate for issues such as sustained MS research funding, robust funding of the FDA, co-sponsorship of a bill to create a separate benefit in Medicare for complex rehab technology, and support of the Congressional MS Caucus. Also in March, the Society announced a new MS research funding commitment totaling over $29 million to support 83 new research and training projects worldwide.

This is an exciting time for the MS movement and we thank you for your participation. Through ongoing awareness efforts we will inspire connections that will one day end MS forever!

Warm regards,

Janelle Del Carlo Chapter President, Northern California Chapter

03NATIONALMSSOCIETY.ORG/CAN | 1-800-344-4867

NATIONAL MULTIPLE SCLEROSIS SOCIETYNorthern California Chapter 1700 Owens Street, Suite 190 San Francisco, CA 94158 1-800-344-4867

Board Chair: Angie LaiChapter President: Janelle Del CarloEditor: Jen Gawler

© 2014 National Multiple Sclerosis Society, Northern California Chapter

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.

NEW WEBSITE UNVEILEDThe National MS Society’s website at www.nationalMSsociety.org/can connects people like yourself who are living with MS with the information, people and resources that can help you and your loved ones live your best lives. To that end, many exciting changes to the site have taken place to improve your ability to connect to:

• INFORMATION. Updated navigation, new content and improved searching help you find what you’re looking for faster.

• EACH OTHER. Our growing online community is even easier to access, making it easier for you to share your experience with others living with MS, healthcare providers and MS researchers.

• THE MS MOVEMENT. Several new features make joining the MS movement a breeze. These features include: a “My Profile” section where you can access your profile information, set preferences and track your involvement; a mobile-friendly design that lets you view the site from your smartphone, tablet or other mobile device; and easier-to-read content and accessibility for anyone using assistive devices like screen readers.

You Talked, We ListenedMany of you - people living with MS, friends and family members, event participants, volunteers, donors and professionals - contributed ideas and input toward the new site. Take some time today to tour the new www.nationalMSsociety.org/can, and let us know what you think! ◊

04 MS CONNECTION: SPRING 2014

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living with MS, Melanie approached her local news station, Congressman and State Senator when her MS therapy was placed on a “specialty tier.” This new categorization meant Melanie faced a “co-insurance” payment of $800 per month. When she was blindsided by these unmanageable costs, Melanie amassed credit card debt just to survive. Other people in similar discriminatory and unfair predicaments can face the inability to pay their mortgage or a child’s tuition, or simply putting food on the table. Melanie took action and because of her activism, has become a leading voice on this issue nationally.

Create Impact with Your StoryDo you have an issue you need resolved? You are the face of MS and make the unmet needs of people living with MS “real” to elected officials. We need your story to tell, particularly those related to the following questions:

1. Have you experienced difficulty enrolling in the Affordable Care Act (“Obamacare”)?

2. Do you think there is a lack of public information available on the price of healthcare services, the paperwork required to attain care or notification of benefit changes?

3. Are you experiencing difficulty gaining access to the medical providers required to address your varying needs?

4. Do you have trouble affording or accessing your MS therapies?

5. If you are on Medicare, do you have problems accessing specialized durable medical equipment, such as customized wheelchairs and scooters?

6. If you are on Medi-Cal, are you having difficulty locating a neurologist or primary care physician?

In a paragraph or two, tell your story and send it to Stewart Ferry at [email protected]. With your permission, we can tell your story as part of crucial testimony to support key legislative hearings in Sacramento this year. As a constituent, you can also send your story to your members of Congress and/or the State Legislators who represent you. Every connection counts! ◊

STATE SENATOR NOREEN EVANS (SECOND FROM RIGHT) AND LOCAL MS ACTIVISTS RECEIVE A RESOLUTION DECLARING MARCH 3-9, 2014 AS MS AWARENESS WEEK

05NATIONALMSSOCIETY.ORG/CAN | 1-800-344-4867

GOLDEN CIRCLE DONORS CHANGE LIVES

Compassionate donors help the Northern California Chapter provide invaluable assistance to the 12,000 people living with MS and their families in Northern California.

Join the movement by becoming a member of our elite circle of passionate people who want to do something about MS now. Golden Circle members make a one-time, annual gift of at least $1,000. Gifts can be restricted to the cure (MS research), care (local programs and services) or cause (the Chapter’s greatest need). All gifts are tax-deductible.

Independent Spirit Fund

Nothing is more frustrating than the loss of mobility and independence. We often take for granted routine activities like driving, getting in and out of our homes with ease and safely showering. For people living with MS, the diagnosis can mean a loss of freedom and independence. Financial contributions directed to the Independent Spirit Fund have a real impact on the lives of people living with MS in our community. Donations provides access to vital services, equipment, modifications and technology to keep people living with MS in their homes and independent.

Your Gift Changes Lives

After living with MS for more than 20 years, Belinda Bellis reached a point where getting up and down the stairs of her two-story home safely limited how she lived. “Climbing the stairs took me 35 minutes so I could only manage to go up or down the stairs once a day,” said Belinda. “Once downstairs, I was there for the day. Installing the chair lift changed my life! The sense of independence and freedom I feel is unbelievable! Now I can go up and down the stairs whenever I want. Thank you for my newfound sense of freedom and independence, allowing me to enjoy my home again.”

Since its founding in the Fall of 2012, your gifts have helped over 70 people remain independent by providing assistive technology devices, durable medical equipment and home and auto modifications. For more information call 1-800-344-4867 or contact Emily Holterman at [email protected].

You can make a donation online at www.NationalMSSociety.org/can/Donate or you can mail checks to:

National MS Society Northern California Chapter 1700 Owens St., Suite 190 San Francisco, CA 94965

Please donate to the Independent Spirit Fund and join the Golden Circle today. ◊

06 MS CONNECTION: SPRING 2014

CONNECT WITH OTHERSFor the past 15 years, Margo Duke has fostered connections within the MS community as a volunteer with Peer Connections. This program connects someone living with MS to a trained volunteer who also has MS and is dedicated to helping navigate the challenges of the disease. Margo reaches out to her peers by phone at least once each week to share information and offer support in areas of need.

“When I first started, most of the people I spoke with were newly diagnosed, facing many uncertainties with their disease,” said Margo. “Throughout the years, I’ve helped them work through issues and overcome barriers. The peer relationship is crucial for this. Peer Connections volunteers can help diminish feelings of isolation that sometimes come with this disease. It’s nice to be able to talk with someone who understands what you’re going through. You really learn a lot about yourself and MS.

Connecting with others with similar life experiences can inspire positive personal change. Here’s how you can connect:

• Join volunteer-led Self-Help Groups online, by phone or in your community. Even available in Spanish!

• Connect with a peer support volunteer.• Visit our online community at

MSConnection.org and start connecting. • Get involved by participating or

volunteering in events like Walk MS or Bike MS: Waves to Wine, which raise money and awareness for MS.

Connect by calling 1-800-344-4867 or visit www.nationalMSsociety.org/can. In the left navigation, click on Find Resources and Support. ◊

11NATIONALMSSOCIETY.ORG/CAN | 1-800-344-4867

ACCESSIBLE FROM THE COMFORT OF HOMERegistration is required for the following teleconferences. Register by calling 1-800-344-4867 or visit www.nationalMSsociety.org/can. In the left navigation, click on Find Resources and Support. Next, filter the results by only showing “online.” Or, you can browse by clicking on a category in the left navigation. The Benefits of Realistic Optimism, with Catherine Freemire, LCSWTuesday, April 1st | 12:00 p.m. - 1:00 p.m.

Is your glass half-empty or half-full? Where did you learn this outlook on life? Has it changed over time or since you were diagnosed with MS? Studies show that “realistic optimism” leads to successful goal attainment, more satisfying relationships and better health, even when living with a chronic condition. This teleconference will provide tools to be more optimistic, even when facing negative experiences and challenges.

Bladder and Bowel Issues in MSThursday, April 3rd | 6:30 p.m. - 7:30 p.m.

Patricia Kennedy, RN, CNP, MSCN, will discuss bladder and bowel issues that may arise due to MS. You will learn about normal behavior versus dysfunction and how to explore these issues further with your healthcare professional so that you may live your best life with MS.

Value Based Living: Creating Your Life Path with Meaning, with Marisa T. Mazza, Psy.DTuesday, May 6th | 12:00 p.m. to 1:00 p.m.

Chronic illness is complex and can create multiple challenges. It can keep us from living the life we want. During this teleconference we will explore important aspects of life and help you evaluate your path. Experiential and skill-based exercises will be practiced.

Gratitude: How to Practice Thankfulness in Your Daily Life, with Catherine Freemire, LCSWTuesday, June 3rd | 12:00 p.m. to 1:00 p.m.

Life can be demanding and stressful, especially if you face the added limitations and challenges of a chronic condition. Practicing gratitude purposefully can bring positive emotions like joy and peace back into your life. At this teleconference participants will learn several ways to practice the two pathways of gratitude.

ONLINE NEWLY DIAGNOSED ORIENTATIONThursday, May 8th | 6:00 p.m. - 7:30 p.m.

A diagnosis of MS can create many unexpected emotions that leave you with a strong need to understand the changes you may be facing. Dr. Elizabeth Crabtree will address the most common concerns for people who are newly diagnosed. This orientation provides an opportunity to have your questions answered and learn more about resources available. Register online or call 1-800-344-4867.

12 MS CONNECTION: SPRING 2014

DEADLINE TO ENROLL IN ACA IS MARCH 31ST

As the March 31st close of the Affordable Care Act’s (ACA) open enrollment period for new coverage approaches, we want to provide you with some important facts and resources to help you get the most out of the law’s advantages. • With important and rare exceptions,

anyone that does not already have health coverage has until March 31st to enroll in a new health plan or face a tax penalty in 2015.

• Insurers are now prohibited from discriminating against people with pre-existing conditions. Insurers cannot deny enrollment, restrict coverage or charge people more due to imperfect health.

• The ACA prohibits lifetime limits (a cap on the total lifetime benefits you can receive from your insurance company) on most benefits in any health plan or insurance policy issued or renewed on or after September 23, 2010.

• In 2014, the ACA prohibits new plans and existing group plans from imposing annual dollar limits (a cap on the benefits your insurance company will pay in a year) on the amount of coverage an individual may receive.

About Covered CaliforniaCovered California is the state’s marketplace for the Affordable Care Act. With coverage

starting in 2014, Covered California helps individuals determine whether they are eligible for premium assistance that is available on a sliding-scale to reduce insurance costs, or whether

they are eligible for low-cost or no-cost Medi-Cal. Consumers can compare health insurance plans and choose the plan that works best for their health needs and budget. Small businesses can purchase competitively priced health insurance plans, offer their employees the ability to choose from an array of plans and may qualify for federal tax credits.

ACA Resources• Speak with a specialist in MS health

coverage at 1-800-344-4867.• The website www.Puttingpatientsfirst.net

helps people with high health care costs see what their estimated out-of-pocket costs are under different health plans.

• Access an Application Checklist for Marketplace Health Insurance and ACA fact sheets at www.nationalmssociety.org. At the top of the page click on Resources and Support, then Insurance and Financial Information. Next, click on Health Insurance, then Affordable Care Act.

Still need help? Get information and help with applications and enrollment by calling 1-800-300-1506 or visit www.coveredca.com. ◊

13NATIONALMSSOCIETY.ORG/CAN | 1-800-344-4867

STUDY ON DATING AMONG SINGLE WOMEN LIVING WITH MS

Ryerson University in Toronto, Canada is conducting a research study to understand the impact of MS on the formation and quality of dating relationships among single women.

Researchers are looking for single, English-speaking women who have been diagnosed with MS for at least six months and are between the ages of 20-40 or 50-65. Participants can expect a short phone call to determine study eligibility and a 60-minute recorded phone interview about how MS has impacted the dating experience and self-image.

All inquiries and participation will be kept CONFIDENTIAL. For more information call 1-800-964-1437 or email [email protected]. Participants will receive a $30 gift card for their time.

MS CONNECTION: SPRING 201414

WALK MS CONNECTS ALL MOBILITY LEVELS Lorri of San Jose was diagnosed with relapsing-remitting MS in 1998 and has faced numerous challenges in the sixteen years following her diagnosis. “I no longer work,” said Lorri. “I’m on disability. I used to run 5k’s and my husband and I rode mountain bikes every weekend. We’ve had to learn to adapt to losing my mobility.” She now uses a cane to balance, as well as a scooter for long distance outings. Despite her limited mobility, Lorri (AKA “Scooter Girl”) found a new passion through her connection to the National MS Society - Walk MS.

Via scooter, Lorri will be participating in her sixth Walk MS event this May at the new Silicon Valley Vasona Park location. She loves the diversity of the event and wouldn’t miss it. “There are so many people at the Walk for so many different reasons,” said Lorri. “I love reconnecting with people I’ve met from previous Walks, and meeting and making new friends.” Walk MS also helped to lift Lorri’s spirits and bring her closer to her husband. “Walk MS has given me another reason to fight MS. I’m now a member of the Walk MS Committee. My husband, Dean helps me deliver flyers and literature to promote the Walk. I like that we’re involved together!”

Lorri encourages people of all mobility levels to participate in Walk MS because she believes the event brings the world closer to finding a cure. “Being a part of Walk MS is emotionally uplifting,” said Lorri. “Experiencing the energy of the day shouldn’t be missed. Donating to Walk MS is a MUST. The money that is raised helps people whose lives are impacted by MS. It also brings us closer to finding a cure for MS!” Lorri also believes Walk MS is a great way to build connections. “Walk MS is a great way to meet people who are like-minded in the battle with MS. There are many opportunities to find information about learning to live with MS. More importantly, it’s a lot of fun!”

Join us for one of 13 Walk MS locations near you (see back cover for dates and locations). Regardless of your mobility level, Walk MS is for everyone! Register at www.WalkMSNorCal.org. ◊

“SCOOTER GIRL” LORRI USES HER SCOOTER AT WALK MS

NATIONALMSSOCIETY.ORG/CAN | 1-800-344-4867 15

JUNE 11TH | 7:00 PM | 5K RUN/2-MILE WALK

REGISTER TODAY | DUSKBUSTER.ORG

YOUNG PROFESSIONALS JOIN THE MOVEMENTMembers of the MS Young Leaders Network (MSYLN) serve as National MS Society ambassadors, helping those affected by MS recognize that they are not alone in this battle. The group produces unique events and opportunities for young adults to connect with each other and with supporters, raising much needed funds and awareness in the Bay Area. Learn more about this great group and how to get involved at www.msyln.org. ◊

MSYLN MEMBERS CONNECT AT THE INAGURAL NETWORKING HAPPY HOUR AT PRESS CLUB IN

SAN FRANCISCO

Northern California Chapter1700 Owens Street, Suite 190San Francisco, CA 94158

REGISTER FOR WALK MSRegister today at WalkMSNorCal.org to connect with others and start fundraising!

Saturday, April 26th

• East Bay: Lakeside Park, Lake Merritt• Solano County: Suisun City Waterfront• Yuba City: Sam Brannan ParkSunday, April 27th

• Eureka: Eureka High School• Monterey Bay: Lover’s Point Park• Pleasanton: Alameda County Fairgrounds• Sacramento: West Steps, State CapitolSaturday, May 3rd

• Modesto: Downey Community Park• Silicon Valley: Vasona ParkSunday, May 4th

• Folsom: Sutter Street Plaza• San Francisco: Justin Herman Plaza• Santa Rosa: Maria Carrillo High School• Walnut Creek: Heather Farms Park

NEW WALK IN PLEASANTONThe Northern California Chapter is excited to announce the addition of Walk MS: Pleasanton on Sunday, April 27th at the Alameda County Fairgrounds. If you are interested in taking an active role in the development of Walk MS: Pleasanton by being a part of the planning committee, please contact Samara Rivers at [email protected].