Summer 2014 Northern California Chapter
MS Connection Newsletter riding with MS at Bike MS: Waves to Wine By Nan Devlin To call Phillip Rosebrook, Jr. motivated would be putting it mildly. This successful businessman goes full throttle in everything he does, including athletics. One of his longtime passions was running, and he ran many miles each week. The first signs of MS were barely noticeable - a twitch in his face, then some eyesight problems. Nothing, he thought, to indicate MS. He was stunned to receive a definitive diagnosis. But with only minor symptoms during the first 10 years, he was able to continue his active lifestyle, including running. Until one day he couldn’t. Out on a run one day, his right foot suddenly stopped working. He literally had to drag his foot home. continued on page 4...
INSIDe THIS ISSUE
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Alie’s Fund for Children and Teens with MS
Phillip Rosebrook, Jr. with his wife and children
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Community Connections & MS Activism
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Scholarships awarded to local students
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walk ms creates meaningful connections
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MS connection: summer 2014
Letter from the president
we are connecting where you are 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:
1-800-344-4867 NationalMSSociety.org/can can_info@nmss.org Like us: /msnortherncal Follow us: /msnortherncal
We hope you are having a wonderful summer and are living life to the fullest. If you need any support, information or assistance, please know we are here for you, connecting where you are. Whether you participate in an online topic discussion on MSConnection.org, participate in a teleconference or gather with us in person, the National MS Society looks forward to connecting with you. The National MS Society helps each person affected by MS in our area address the challenges of living with MS. We help by raising funds for cutting-edge research through events like Bike MS: Waves to Wine on September 20-21 (see cover story) or the 13 Walk MS events we hosted this spring (see page 14 for a recap). The Society is driving change through advocacy efforts, like those described on page six for which we are looking for personal stories. We facilitate professional education, and provide programs and services that empower people with MS and their families to move their lives forward (see page eight for upcoming programs). And finally, we help connect you to the care you need, no matter where you live or what obstacles stand in your way (see page seven for how you can connect). Wherever the summer takes you, know that the National MS Society is here to support you and be a resource. Happy travels and enjoy the weather! Warm regards,
Photobucket: /user/NationalMSSocietyNorCal/library/ MSConnection.org
Janelle Del Carlo Chapter President, Northern California Chapter
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Alie’s Fund for Children and Teens with MS Alie’s Fund for Children with MS provides funds to support children, teens and young adults ages 2-22 who live with MS. Alie Rothman was diagnosed with MS at the age of 14 and is currently living her life to the fullest. The Society served as a critical source of information and support to Alie and her family. The Society referred doctors with expertise in MS care, worked with her schools to allow extra time for exams and guided her college advisors about the intricacies of her life with MS. Alie is continuously inspired by the efforts of people who raise funds to find solutions so people with MS can live their best lives. Stories from children affected by financial hardship motivated her to start the fund. Alie’s Fund supports a wide range of needs by offsetting the costs of the following: • Educational needs (elementary, primary, secondary) • Insurance co-pays • Medical needs, like physician visits, testing and durable medical equipment • Personal and emotional needs • Transportation • Referrals • Respite services For more information and how to apply for funding support, please call 800-344-4867. ◊
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 © 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.
04 ...continued from page 1 Advancing MS symptoms changed him in unexpected ways. “It’s about perception,” said Phillip. “You’ve got to make a decision whether a chronic illness will make you or break you. It took me awhile, but I finally realized I had been given a gift.” He also found that his active lifestyle wasn’t over. It just transformed. While his feet would no longer support a long run, his legs could pump a bike for even longer distances. Phillip became involved in Bike MS after he saw a training event announcement and felt both a connection and a challenge. His first ride three years ago was 135 miles long and raised over $10,000. “Riding a bike gave me the ability to let go of limited perceptions,” said Phillip. “And Bike MS gives me something to work for - from the first dollar raised, I am accountable. I can use my story to effectively fundraise and perhaps
This jersey is provided free of charge to all I Ride with MS participants
MS connection: summer 2014 be an inspiration to others. I came to see that MS is not about me, it’s about my attitude. I may not be able to run a marathon, but I can sure ride.”
support for riders with ms On September 20-21, 2014 the Chapter will host Bike MS: Waves to Wine, a twoday ride with 2,500 of your closest friends. Not only is it the largest revenue generator for the Chapter, Waves to Wine is also one of the most picturesque rides in the country with views of the Golden Gate Bridge, Pacific Ocean and Sonoma County vineyards and farmlands. The ride has route options as short as 40 miles and as a long as 175 miles over two days packed with meals, generous amenities, stocked rest stops, SAG vehicles, camping, spirited festivities and a wine and beer garden. The Chapter is excited to renew the partnership with Genzyme and MS One to One to sponsor this year’s IRWMS program.
nationalmssociety.org/can | 1-800-344-4867 With this sponsorship, they are providing a special I Ride with MS jersey to participants living with MS. As one of the most monumental achievements any rider can experience in a lifetime, Waves to Wine is both a weekend-long and lifelong stance against MS. The I Ride with MS (IRWMS) program is unique to the Bike MS experience. Started by the Northern California Chapter, the program is entering its seventh year and provides inspiration and motivation for all involved. Not only will IRWMS participants have access to our professional bike mechanics, certified medical crews, and SAG vehicles, they will have access to the following: • Networking group on MSConnection.org • Training ride on the route • Priority start at Waves to Wine on Sunday • Special bike rack area at Waves to Wine
05 There are many volunteer opportunities for families, corporate groups and individuals, such as medical support, rest stop management, photographer, setup and breakdown, and support vehicle driver. Learn more about Bike MS: Waves to Wine, volunteering, donating and to register at wavestowine.org. ◊ ----------------------------------------------------------About the Author Nan grew up listening to amazing family stories so it’s not surprising she became a storyteller and writer. Her company, Northwest Content, helps businesses tell their stories, too.
To participate in the I Ride with MS program, visit www.WavestoWine.org. In the lefthand navigation, click on “Do You Ride with MS,” then click on “Join the I Ride with MS Program.” For questions, call 855-372-1331.
If you can’t ride, volunteer! Waves to Wine would not be possible without help from hundreds of wonderful volunteers. “I see entire families along the bike route, working aid stations, encouraging the riders, volunteering at events, and donating money,” said Phillip.
I ride with ms participants like Kristin give visability to the very people waves to wine supports
06 Community Connections are Key to Successful MS Activism The famous refrain “All politics is local,” said by former House of Representative Speaker Tip O’Neil, are words that ring true for the National MS Society’s advocacy efforts. We are embarking on an ambitious plan to recruit and train District Activists throughout California. These important volunteers serve as the political eyes and ears for the Society. Our idea is to have MS activists serve as the liaison between the Society’s Government Relations staff and their local MS community. We are looking for members of the MS community to join our efforts and help us grow our activist network.
you can have IMPACT District Activist Leaders speak about our policy priorities at community events and help to identify the issues that need to be addressed ---------------------------------------------------------
We are looking for members of the MS community to join our efforts and help us grow our activist network. --------------------------------------------------------directly by our advocacy work. These activists drive change by deepening relationships between elected officials and the MS
MS connection: summer 2014 movement – and they do this by sharing your stories. Your stories create a personal imprint in the mind of the elected official regarding the impact MS has had on your life and within your community. The relationships that Activist Leaders build and the stories they share will help to ensure that when an elected official hear the words “multiple sclerosis,” they feel compelled to take action. ◊
Share your experience
Stories needed on experience with high out-of-pocket monthly prescription drug expenses. In the California State legislature there is a pending bill, AB 1917 (Gordon), that annualizes the cost of prescription drugs so that consumers who have extremely high monthly out-of-pocket costs can spread out those costs over the course of the contract year of their insurance plan. We need to address the expensive monthly cost sharing for MS drugs. Our advocacy efforts on AB 1917 need the voices of people who have been affected by these high out-ofpocket prescription drug costs. If you have experienced huge bills in the first months of use of your health plan because of the high cost of your medications, please send a brief explanation to Stewart Ferry, State Director of Public Policy for the California Chapters of the National MS Society, at stewart.ferry@nmss.org.
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accessible from the comfort of home Registration is required for all programs unless otherwise stated. Register by calling 1-800-344-4867 or visiting our Calendar at www.nationalMSsociety.org/calendar/ norcal.
The Worry Trap with Chad LeJeune, Licensed Psychologist Tuesday, July 1st | 12:00 - 1:00 p.m. Wondering what the future will hold is one of the most difficult aspects of living with a chronic illness that follows a highly variable course. This can make it hard to notice what today has to offer. This talk will provide strategies for changing how we respond to “what if ” thinking through a five-step model to shift toward a greater appreciation of “what is.”
Living a Life of Awareness with Don Miguel Ruiz, Jr. Tuesday, August 5th | 12:00 - 1:00 p.m. The Ruiz family offers the guidance and inspiration of ancient Toltec wisdom through workshops and multiple books including “The Four Agreements.” Explore the transformational path of re-painting the canvas of your life with MS in the picture.
Stress & MS with Dr. Louisa Lavy, Neurologist Thursday, August 7th | 6:30 - 7:30 p.m. In this teleconference, participants will: • Learn how to recognize the signs of stress • Learn new strategies to help reduce stress • Learn to distinguish the difference between stress and depression • Understand how high levels of stress may impact MS
Unlocking Your Resilience with Sherry Johnson, Licensed Marriage and Family Therapist Tuesday, September 2nd | 12:00 - 1:00 p.m. Join this call to increase your understanding of resiliency, recognize your stressors and learn constructive ways to cope. We will identify tools to avoid resiliency roadblocks and develop a personal plan for achieving a more resilient life.
Online Newly Diagnosed Orientations Thursday, July 10th | 6:00 - 7:30 p.m. Thursday, September 11th | 6:00 - 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 are facing. Dr. Elizabeth Crabtree, Assistant Clinical Professor of Neurology at UCSF and Director of Patient Program Development at UCSF’s MS Center, will address the most common concerns for people who are newly diagnosed. This is an excellent opportunity to have your questions answered and learn more about the resources available to persons with MS. A phone and computer with internet access are necessary.
12 society Scholarships awarded to four local students MS shouldn’t stand in the way of an education. This is why the National MS Society’s scholarship program exists - to help highly qualified students who have been diagnosed with MS or who have a parent with MS achieve their dreams of going to college. The Society established its scholarship program in 2003 and the program continues to grow both in terms of support and scholarships awarded. In its first year of operation the program awarded 36 scholarships across the US for a total of $68,000; in 2014 over $1 million was awarded to 718 scholars.
Northern California Scholars The Northern California Chapter is proud to congratulate the four students from our local schools who were selected for the 2014 awards: • Matthew Walls • Simone Stevens • Bailey McDowell • Megan Hoffman Megan Hoffman has been awarded a one-time $1,000 scholarship funded by the National MS Society’s home office. Simone Stevens and Bailey McDowell have been awarded four-year scholarships of $1,000 funded by the Chapter. As a Top Scholar, Matthew Walls has been
MS connection: summer 2014 awarded a four-year $3,000 scholarship.
Funding scholarships In 2014, 1,028 students Nationwide submitted scholarship applications, a clear demonstration of the need for this targeted financial assistance program. The Society was able to fund 460 of these new applicants and 258 renewals for a total of $1,142,675, but we were not able to fund all of the deserving students who applied. Support for the scholarship program comes from foundations, chapter donors, our own employee giving program and other sources. To find out how your organization can support this program, contact Julie Stone Hurley at 303-698-6100, ext. 15259 or email her at Julie.Stone.Hurley@nmss.org. To find out how you as an individual can help, contact Susan Goldsmith at 303.698.6139, ext. 15102 or Susan.Goldsmith@nmss.org.
apply for the 2015 scholarships Applications for the 2015 scholarships will be available online in October 2014. Look for information in the Chapter’s October eNewsletter, on our website homepage and on social media. Learn more and apply at www.nationalmssociety.org. Click on Resources and Support, then Insurance and Financial Information. Next, click on Financial Resources, and then on Scholarship Program. You can also call 800-344-4867. ◊
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congratulations to our 2014 scholars!
Megan Hoffman
Bailey Mcdowell
Matthew Walls
Simone Stevens
Ford Mustang 50 Years Convertible being raffled to benefit ms research The National MS Society, coordinated by its Michigan Chapter, is partnering with the Ford Motor Company to raffle off a 2015 Mustang GT 50 Years Convertible. This ‘one of one’ vehicle was customized for the Ford/National MS Society raffle. It is the only 2015 convertible to be built with a performance pack and content from the 50 Year Limited Edition fastback. Don’t stall – learn more by visiting www.ford4ms.com where you can request your raffle tickets today. Tickets are the price of a large pizza and funds will benefit the Society and the No Opportunity Wasted (NOW) research initiative with a goal of raising $2 million! The drawing is August 16th and tickets will sell out!
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MS connection: summer 2014
walk ms 2014 creates meaningful connections This April and May, the Northern California Chapter hosted 13 Walk MS events throughout Northern California. Walk MS is the rallying point of the MS movement, a time for people to come together to celebrate our successes, make connections with others affect by the disease, and raise critical awareness and funds which support the 84,000 people affected by the disease in Northern California, as well as critical MS research. The 2014 events are projected to raise almost $1.4 million. Thank you to the sponsors, volunteers and participants who helped make these events a success!
THANK YOU TO OUR SPONSORS!
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Walking Orange Orange Walking by Lisa Cohen, Walk MS: Santa Rosa
A sea of orange A winding snake of orange Going a mile or 3 Made up of wheelchairs, scooters, walkers, walking poles, canes, people limping People walking without aides or difficulty Friends and relatives joining the sea, assisting From babes in arms to octogenarians They walked in the orange sea And then there were the dogs, all shapes and sizes Wearing orange kerchiefs around their necks People were all different Yet all were contributing to the cause Of helping MS Of looking for a cure All with different problems But for one day they forgot their problems And came together happily Joining in a sea of orange.
Northern California Chapter 1700 Owens Street, Suite 190 San Francisco, CA 94158
FINISH MS
Finish MS offers runners, cyclists, swimmers and distance athletes of all types the chance to create a world free of MS while pushing their own personal limits.
www.FinishMS.org
Solano County Fairgrounds October 11, 2014 MuckFest.org