SPRING 2013 NORTHERN CALIFORNIA CHAPTER
MS CONNECTION NEWSLETTER TWISTS OF FATE BY JULIE HARE
Life often hinges on twists of fate. Only a few years ago, I was a full-time elementary school teacher and my husband, Stephen, had a management position at a local Napa Valley winery. Then, I was diagnosed with MS, and other significant events happened, as well. The economic downturn caused my teaching job to be eliminated and Stephen was informed by his new boss that his services at the winery would no longer be required. Things seemed so bleak that we agreed we had nowhere to go but up. While I was attempting to face and accept my new life with MS, I sought out and found support from family, friends and various MS programs. I benefited from webinars, teleconferences and counseling sessions, to name a few. I was amazed at the depth of help and services available to individuals living with
INSIDE 04 THIS ISSUE
KEEPING PEOPLE MOVING WITH FINANCIAL ASSISTANCE
MS and their support partners. The more I benefited from these valuable programs, the more passionate I became about wanting to figure out a way to give something back so others could benefit, as well. ...continued on page 3
JULIE HARE OF COUNTER PUNCH WINES
PROGRAMS FOR WHEREVER YOU LIVE
11 MEET OUR COMMUNITY SERVICE INVESTIGATORS
15 PROGRESS IN MS THERAPIES
MS CONNECTION: SPRING 2013
LETTER FROM THE PRESIDENT
EVERY CONNECTION COUNTS Dear Friends,
“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: Northern California Chapter nationalmssociety.org/can email@example.com Like us: /msnortherncal Follow us: /msnortherncal
Spring is a time for renewal and growth; a time to come out from our winter slumber and connect with others. Connections are what will bring an end to MS; connections with scientists driving cuttingedge research; connections with advocates pushing for legislative change to improve the lives of people living with MS; connections with one another, building a community to share experiences and offer support; and connections with event participants and volunteers to raise funds for critical programs, services, and research. The new 2013 awareness campaign slogan is “Every Connection Counts.” This spring I encourage you to make every connection count and find ways you can join the movement, whether by volunteering your time and talents, participating in a fundraising event, or helping to spread awareness about MS and advocating for change. Every connection we make truly does make a difference as we strive to stop MS in its tracks, restore function that has been lost, and end MS forever. Walk MS is the perfect spring opportunity to connect with others affected by MS. It is day we come together to show the power of our connections. Join us at one of 12 Northern California Walk MS events and start fundraising today. The money we raise at Walk MS speeds new treatments for people with MS, ensures financial support for people dealing with the havoc MS causes and supports local programs. I hope you will connect with us!
Janelle Del Carlo Chapter President Northern California Chapter
NATIONALMSSOCIETY.ORG/CAN | 1-800-344-4867 ...continued from page 1
These feelings manifested themselves after attending an MS support group at UCSF. The topic for discussion that evening was gratitude. While others in the group were sharing what they were thankful for, we were having a difficult time focusing in on what we were thankful for. Later that evening, while reflecting on gratitude and our recent lifechanging events, a photo on our family room wall took on new meaning. The photo was taken in the early part of the 20th century and was of Stephen’s maternal grandfather in a playful boxing stance. The idea emerged that we could, as a couple, join our mutual passions - Stephen’s for the California wine industry and mine for wanting to give something back to the MS world. Counter Punch Wines was born. That photo on the
03 wall would become the art for our future wine label. Our goals for Counter Punch Wines are to create great wines that are produced from California’s best grape growing regions and to donate a portion of the profits back to organizations that help “counter punch” the effects of MS. Our goal is to increase production and distribution so we can give more back to help people with MS live more enriching lives. Sharing a venture that we are passionate about and that somehow feels larger than us has given us another avenue in which to share our lives with one another. Let’s face it; MS is a bear of a disease that alters one’s life dramatically. The blessing is that as I developed MS, mine and Stephen’s ...continued on page 4
NATIONAL MULTIPLE SCLEROSIS SOCIETY Northern California Chapter 1700 Owens Street, Suite 190 San Francisco, CA 94158 1-800-344-4867 Board Chair: Angie Lai Chapter President: Janelle Del Carlo Editor: Jen Gawler © 2012 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.
04 relationship became stronger. We have been married close to 30 years and during life’s challenging times, once again, we turned toward instead of away from each other. I believe that life does hinge on simple twists of fate. Yes, I was diagnosed with MS and we both lost our jobs within a relatively short period of time. However, since we were having such a difficult time, the picture of Stephen’s grandparents took on a new significance and sparked the idea of how we could participate in a positive way to help improve the lives of people living with such a challenging disease.
WE KEEP PEOPLE MOVING WITH FINANCIAL ASSISTANCE The financial assistance provided by the National MS Society helps thousands of people living with MS across America each year. The assistance is made possible through event fundraising, donations and key partnerships. Elizabeth Ayers is one of the many people who was recently helped by the Northern California Chapter. Elizabeth was diagnosed with secondary-progressive MS in 2007, but like many people, may have had MS well before her actual diagnosis. One of the keys to Elizabeth maximizing her well-being is maintaining her positive attitude. Elizabeth and her husband, Marty, stay active
MS CONNECTION: SPRING 2013 Both Stephen and I are thankful for the path which has been laid before us and our choice to embark down that path together. We relish the chance to produce some fabulous Counter Punch Wines and donate funds to help others benefit from the many programs available from the National MS Society. To learn more about our Counter Punch venture and/or to purchase wine, please visit our website at www.counterpunchwines.com, visit us on Facebook, or call 707-815-7267. ◊
in their community, and Elizabeth provides peer support and connection by volunteering at the local community senior program in Marin County. In addition, she assists this program with accessing important funding. Elizabeth also uses her artwork to make cards and calls them “Lemonade Greeting Cards” because when life gives her lemons, Elizabeth makes lemonade. After years of living with MS and using a wheelchair, the process of Marty transferring her from a wheelchair into their vehicle became too difficult and unsafe for them to manage. They were both at risk for falling and were suffering from the physical stress. That’s when Elizabeth and Marty learned about an automated car seat that could extend and lower to street level, making it easy for Elizabeth to slide onto the seat and be raised back into the vehicle. This automated seat system was beyond their budget, so Elizabeth
NATIONALMSSOCIETY.ORG/CAN | 1-800-344-4867 and Marty got busy finding help from community agencies including the National MS Society. After completing the Society’s two-page application, and submitting the supporting documents, Elizabeth and Marty were thrilled to learn they were approved for a substantial portion of the automated seat. They worked hard to gather all the funding needed, and were also able to get a portion reimbursed through Toyota’s mobility program. Elizabeth can now continue to stay active in the community, volunteer and share her positive attitude of gratitude with friends old and new. Elizabeth said, “I feel blessed and surrounded by ELIZABETH AYERS angels. This is going to continue to support my full and happy life”. ◊
INCREASE YOUR ACCESSIBILITY Do you need an accessible bathroom, auto modification, power chair or other item to improve the quality of your life? Are you on a limited income and concerned that you cannot afford the cost? The Northern California Chapter may be able to help. Every year we partner with charitable foundations and leverage thousands of dollars to make an impactful difference in the lives of people living with MS. Please call our Information and Referral Center at 1-800-3444867 to request a financial assistance application and learn if you might qualify for this special assistance.
BE AN MS ACTIVIST Educate your public officials and others about the best interests of people with MS and their families and help drive change. Learn more and sign up to be an MS Activist at http://capwiz.com/nmss/mlm/signup/.
Learn about the digital tools available at www.nationalMSsociety.org/digiMSactivist. • • • •
GET INFORMED RISE UP TAKE ACTION RECRUIT
MS CONNECTION: SPRING 2013
ACCESSIBLE FROM THE COMFORT OF HOME
EMOTIONAL WELLNESS TELESERIES
Important Decisions about Employment Benefits when Living with MS
Life Coach and Psychotherapist Catherine Freemire, LCSW, leads the discussions. Each monthly topic has two call times. Calls are open to anyone interested. To register call 800-344-4867 or nationalmssociety.org/can.
April 4th, 6:30 p.m. - 7:30 p.m. Discuss the impact of employment on public and private benefit systems. This program will feature Joe Entwisle, MS, CLCP, a Senior Policy Analyst for the National Consortium for Health Systems Development. To register for this teleconference, please call 1-800-3444867.
Online Newly Diagnosed Program Thursday, May 9th, 6:00 p.m. - 7:30 p.m. This web-based program will be conducted by Dr. Elizabeth Crabtree, Assistant Clinical Professor of Neurology at UCSF and Director of Patient Program Development at UCSF’s MS Center. A phone and computer with internet access are necessary. Pre-registration is not required. Visit www.nationalMSsociety. org/can or call 800-344-4867 to receive the log-in information.
Sleep Problems for Those with MS Teleconference Thursday, June 6th, 6:00 p.m. - 7:30 p.m. Consistent sleep problems can make living with MS more challenging. Learn about common sleep disorders for those with MS and begin to understand the impact that sleep has on quality of life and inflammation. You’ll also learn more about natural aids and pharmaceutical options to improve sleep.
April: New Year’s Resolutions Revisited Tuesday, April, 4th at 2:00 p.m. Tuesday, April 16th at 12:00 p.m. Did you know that 8% of people actually follow through with their resolutions? Come to this workshop to learn how to create doable resolutions and how to increase the chances that you will follow through.
May: Practicing Ways to Increase Our Joy Tuesday, May 7th at 2:00 p.m. Tuesday, May 21st at 12:00 p.m. This workshop will cover the ways to increase and enhance our joy through the lens of the past, present and future. Learn concrete strategies that help to enliven us by deepening our experiences of joyful times already lived or yet to come.
June: Dealing with MS Socially Tuesday, June 4th at 2:00 p.m. Tuesday, June 11th at 12:00 p.m. Participate in a discussion on how to better deal socially with MS and learn tips on how to handle social issues.
NATIONALMSSOCIETY.ORG/CAN | 1-800-344-4867
MEET OUR COMMUNITY SERVICE INVESTIGATORS Every year the National MS Society utilizes thousands of volunteers to continue moving our mission forward to end MS and serve those affected by MS. Providing key service provider referrals is one of the many ways we assist our constituents. Keeping our referrals active and up-to-date requires the assistance of volunteers like Mary and Barbara.
Mary helps our chapter keep hundreds of key referrals accurate and up-to-date on an annual basis. These referrals for clients include neurologists, housing resources, community agencies, professional counselors and more. Mary is also a peer counselor with our chapter, providing emotional support to others living with MS. Mary said, “When I was no longer able to work, it was very difficult for me because I’ve worked my whole life. I volunteer with the MS Society because I now can. I want to contribute; I want to make a difference some place. It is so rewarding to be engaged in something that really matters to me and others.” Mary lives in Redwood City with her husband, Andrew, their children, Jake and Haley, and their dog, Maddie.
Mary has been a community service investigator for over a year, volunteering in our chapter headquarters office in San Francisco. With the help of her husband and paratransist services, Mary travels a total of 100 miles each week to volunteer. She was diagnosed with MS in 2000, but believes she had MS ten years before being diagnosed. Mary’s previous work was as an insurance professional and director, with a customer services specialization.
Barbara has spent countless hours volunteering from home, calling providers and searching the internet to update our housing service referrals. Barbara comes to us with a long history of working in the field of social services. Although MS symptoms caused Barbara to take an early retirement, she wanted to utilize her skills in a positive way
12 and decided to dedicate some time to the MS Society. Barbara described the information she has received through our educational programs and resource services as invaluable. Barbara said, “I enjoy feeling productive again and giving back to an organization that has helped me and is advocating for all of us who are part
MS CONNECTION: SPRING 2013 of the MS community.” Barbara lives in Chico with her husband, Roger, and their Siamese cat. To receive any of these service provider referrals or to learn about volunteer opportunities with our chapter, please call us at 1-800-344-4867. ◊
WE NEED YOU TO VOLUNTEER Volunteering for the Society can be the experience of a lifetime - and we need your experience. More than 500,000 volunteer positions keep the Society running. Did you know that in 2012 volunteers provided over 5,000 hours? Visit our Volunteer page at nationalmssociety.org/can to register and let us know your interests, skills and availability. Or call 1-800-3444867 to speak to Todd Creel, volunteer coordinator. Here is a sampling of ways to volunteer. • Office Projects and Front Desk Volunteers: Help with mailings, data entry and other office tasks. Assist people when they visit our office. • Fundraising Events: Events like Walk MS and Bike MS run on
volunteer muscle and expertise to deliver supplies, prepare and serve food to hungry participants, or cheer people on at the finish line. • Services & Support Volunteers: Be a helping hand and compassionate voice for people living with MS in our community. Volunteer opportunities include spending time with people living with MS, ensuring the Chapter offers excellent referrals to clients, and providing emotional support. • National MS Society Internships: Gain invaluable experience while joining the MS movement as a chapter intern. Possible internship opportunties include:
° Advocacy Intern ° Communications Intern
° Development Intern ° Programs and Services Intern
° Special Events Intern
MS ACTIVIST MEETS WITH HOUSE MINORITY LEADER Throughout 2013, MS Activists will contact and meet with their representatives in both Washington D.C. and Sacramento to testify at public hearings and attend policy conferences. These connections are important to raising awareness, supporting programs and services, and funding research. This year, more than 15,000 MS Activists will send roughly 30,000 messages to their legislators on Capitol Hill, urging them to support MS health and disability issues.
MS CONNECTION: SPRING 2013 wheelchair and decided to become involved with MS activism, utilizing his advocacy skills and leveraging political contacts to benefit others living with MS. “Having been involved in politics my entire professional career, I know first-hand the value of contacting and getting to know your state and federal elected officials,” Al said. “Always keep in mind that all politics is local. Getting to know your local city council and county supervisor is a good start since, at some point, they’re likely to become members of the legislature or Congress.” Most important of all, Al said, “You don’t have to be an expert or professional. All you need is to communicate the issue or barrier you are facing. Their offices have constituent service staff for the expressed purpose of helping their constituents. Those who take advantage of that fact enroll more help to solve their problems.” ◊
Al Pross, a leading Northern CA Chapter Activist, met with House Minority Leader Nancy Pelosi and U.S. Representative Anna Eshoo, in Pelosi’s San Francisco office. Al has known Pelosi since working together in the early 1980s. Al and Stewart Ferry, the CA State Director of Public Policy, met with Pelosi and Eshoo to discuss the importance of continuing to fund MS research through the National Institute for Health and Congressionally Directed Medical Research Program. They also emphasized the importance of maintaining levels of funding for those on Medicare and Medicaid in the face of further cuts by both the “fiscal cliff” and sequestration. In 1996, Al was diagnosed with primaryprogressive MS. By 2000, he was using a
REPRESENTATIVES ESHOO AND PELOSI WITH AL PROSS AND STEWART FERRY
NATIONALMSSOCIETY.ORG/CAN | 1-800-344-4867
PROGRESS IN MS THERAPIES BY MEGAN WEIGEL, CNP, ARNP-C, MSCN
In 1993, Betaseron was released to market as the first disease-modifying therapy for multiple sclerosis. With the approval of oral teriflunomide (brand name Aubagio®) in 2012, we now have nine disease-modifying therapies to treat relapsing forms of MS - and more on the horizon. Research on potential treatments for progressive forms of MS is also underway, and the International Progressive MS Collaborative, of which the Society is a member, plans to do all it can to speed the development of those treatments.
Here are the therapies to keep an eye on as we move forward into 2013. • BG-12 is an oral fumarate that has been used in Europe for over a decade to treat psoriasis. It is thought to inhibit immune cells active in MS and may even be protective against damage to the brain and spinal cord. Two large phase III studies found that BG-12 significantly reduced relapses and disease activity as detected by MRI. • Alemtuzumab, a monoclonal antibody that depletes circulating immune cells thought to be responsible for MS attacks, could be administered by IV infusion for
15 five days and then for three days one year later. While this therapy is powerful against MS, there is concern regarding adverse events, such as immune thrombocytopenic purpura (ITP, a bleeding disorder), and autoimmune thyroid disorders. • Laquinimod is a once-daily oral immune modulator that proved in phase III studies to statistically significantly decrease relapse rates. This drug is about to be tested in another phase III study in 1,800 people with relapsing-remitting MS. • Daclizumab and ocrelizumab are two other monoclonal antibodies currently under study, with favorable results thus far. A highly concentrated liquid formulation of daclizumab is under study in relapsingremitting MS. Experimental ocrelizumab, given intravenously, significantly reduced disease activity on MRI scans in a study of 218 people with relapsing-remitting MS. • Clinical trials of treatments for progressive forms of MS are currently underway: these include natalizumab (Tysabri), fingolimod (Gilenya) and ocrelizumab. To follow progress on potential MS therapies, sign up for the MS eNEWS at www.nationalMSsociety.org/signup, or visit www.nationalMSsociety.org/research. Megan Weigel is a Doctor of Nursing Practice and MS Certified Nurse who has been caring for people with MS for 12 years. This article was originally published in the North Florida Chapter’s MS Connection newsletter.
Northern California Chapter 1700 Owens Street, Suite 190 San Francisco, CA 94158
OCT. 26 MUCKFEST.ORG YOU WON’T FIND A MORE EXHILARATING OBSTACLE RUN WITH MUD THAN MUCKFEST MS! RISE TO THE DIRTY CHALLENGE