SUMMER 2016
SOUTHERN CALIFORNIA & NEVADA CHAPTER
MS CONNECTION NEWSLETTER
INSIDE 04 THIS ISSUE
ADVOCACY
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WALK MS 2016 HIGHLIGHTS
PROGRAMS CONNECTION
SELF-HELP GROUPS
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MS CONNECTION: SUMMER 2016
LETTER FROM THE PRESIDENT
TAKING STEPS TOWARDS A CURE This year marked another impactful spring Walk season with over 15,800 participants making strides throughout Southern California & Nevada. Our goal this year is to raise $2.5 million, and we are getting close!
The funds you raise through Walk MS contribute to groundbreaking MS research as well as life-changing programs and services to help those with MS live their best lives. The Chapter’s programs and self-help groups are great resources for people affected by MS. I encourage you to review a complete list of our upcoming programs and self-help groups beginning on page 12. Your efforts also fund scholarships for students who either live with MS or have a parent with the disease. Please read more about this year’s recipients on page 8. There are many opportunities to become involved with the Society throughout the rest of the year, including events like Bike MS: Vegas, MuckFest MS, and Challenge Walk MS. You may also join the movement in other ways including making a donation, volunteering your time, or becoming an MS Activist. You can find more information about each of these options throughout this edition of MS Connection.
CONNECT WITH US ONLINE:
Gratefully,
www.nationalMSsociety.org/CAL
Julie Kaufer, Chapter President
MSSouthernCal
MSSoCalNev
MSSoCalChapter
WELCOME TO THE BOARD, DR. NANCY SICOTTE & ALEXI VARANKO! Nancy L. Sicotte, MD is Director of the Multiple Sclerosis Program and Director of the Neurology Residency Training Program at Cedars-Sinai. She was Clinical Advisory Committee (CAC) chair from 2012-2014 and has given countless presentations at client groups and professional trainings. She is part of our physician consult program and runs the MS residency program at Cedars-Sinai Medical Center. Alexi Varanko is the Vice President of Technical Operations at The Walt Disney Studios. Alexi has worked in the technology field for over 20 years across several industries. He started his own consulting firm twice, led IT organizations for leading companies like Microsoft, Experian, Disney, and several startups. He has extensive international experience, building and leading organizations across the globe. Alexi is a Bike MS advocate and has been participating in Bike MS events across the country, raising money for the National MS Society.
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NATIONALMSSOCIETY.ORG/CAL | 1-800-344-4867
FUNDRAISING
DVF EVENT RAISES FUNDS FOR NMSS On February 25, fashion mogul Diane von Furstenberg, held a star-studded, retail charity event at her DVF boutique at The Grove in Los Angeles. The event honored actress Jamie-Lynn Sigler, who publicly disclosed her MS diagnosis in mid-January of this year. Sigler, who most notably starred as Meadow Soprano in the HBO series, The Sopranos, has been living with MS for the past 15 years. Many celebrities came out to support the starlet, including Glee star Lea Michele, Emmanuelle Chriqui from HBO’s Entourage, and JoAnna Garcia. Diane von Furstenberg styled patrons in her imaginative fashions. The event not only raised MS awareness, but 20% of all proceeds went to the National MS Society. n Katie LoBianco, Kate McIntosh, Jamie-Lynn Sigler, Diane von Furstenberg, Jordan Geller
NATIONAL MULTIPLE SCLEROSIS SOCIETY Southern California & Nevada Chapter 5150 W. Goldleaf Circle, Suite 400 Los Angeles, CA 90056 1-800-344-4867 Chair: Kim Phillips Editor: Emily Hazlett Designer: Nare Ovsepian Copywriter: Jenna Tucker © 2016 National MS Society, Southern California & Nevada Chapter; Published Quarterly—Summer 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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MS CONNECTION: SUMMER 2016
ADVOCACY
FROM CAPITOL TO CAPITOL Spring 2016 marked one of the most productive times for MS Activists in recent memory, thanks in part to the Public Policy Conference in Washington, D.C. and California State Action Day. Meetings and follow-ups made by MS Activists had an incredible impact by growing co-sponsorship of the Advancing Research for Neurological Diseases Act, securing over half of Congress’ support for the National Institute of Health’s funding request, and gaining the support of 80 representatives for MS research through the Congressionally Directed Medical Research Program (CDMRP). Tom Campbell was one of 26 activists from our California delegation to travel across the country to attend the Public Policy Conference. He shares his experience attending both spring events.
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Being a member of the Government Relations Committee has shown me that our voices really can make a difference, that legislators do in fact listen to us, and that the work we do in government is critically important to effecting change for people with MS. —Matt Cohen, San Francisco District Activist Leader and Government Relations Committee Member
“I’ve always worked in government relations, and when my MS diagnosis came 12 years ago, I felt a calling to use my background to help MS activism. The officials I meet with often have pre-conceived notions about MS, and don’t know the impact their decisions have on people with MS, but after I meet with them they do. “This March, I had the honor of attending the Public Policy Conference for two days of training, followed by a day on Capitol Hill. We discussed federal funding for MS research and related issues with four congressional offices. I shared my personal story to bring our public policy issues to life, namely the accessibility and affordability of health insurance and prescription drugs. Legislators and staff often cannot yet commit to supporting the MS policy agenda, but this sets the stage for longterm follow-up. Making personal connections cuts through the otherwise intimidating landscape of government.” n
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Joining forces with hundreds of others while visiting the nation’s Capital, as well as the state’s, offered me the chance to share my personal story with key law makers while demonstrating the larger MS community’s determination and perseverance in working to improve the lives of people with MS. —Sue Higgins, Vice Mayor of Oakley and District Activist Leader
NATIONALMSSOCIETY.ORG/CAL | 1-800-344-4867
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ADVOCACY
CALIFORNIA STATE ACTION DAY
Two weeks after the Public Policy conference, MS Activists from all over the state joined forces at California State Action Day. Participants heard from the Chair of the Senate Health Committee, Sen. Ed Hernandez and visited 90 members of the state legislature, advocating for multiple pieces of legislation including:
Patient Cost Sharing (CA - SB 923): Protects consumers from changing co-payments, coinsurance, deductible or any other cost-sharing requirements during the plan year, unless required by a change in state or federal law. Telehealth Access (CA - AB 2507): Requires health plans to include telehealth as a reimbursable service. For people living in rural areas or who are unable to travel to a doctor’s office, telehealth services have the ability to improve the quality of care provided to patients and their families, and facilitate equal access to MS specialists. Timely Access to Care & Consumer Call Center Rights (CA - SB 1135): Requires that health plans notify patients of their right to timely access to care and language assistance through existing plan documents and communication channels. This bill will help ensure that people living with MS can avoid costly and potentially damaging delays in obtaining health care services. Nevada (RO-74): Thanks to letters to the editor of major newspapers, key hearing testimony from leading Nevada MS Activist Angela Fuss and various calls and letters to decision makers, victory was gained! Nevada (RO-74) prevents changing a person’s health plan benefits and cost sharing requirements during the contract year. No longer can an MS drug be placed on a more costly pricing tier. Over a dozen MS Activists met with members of the Nevada State Legislature to educate them about this and other important regulatory issues related to access of quality and affordable healthcare for all persons with a chronic illness. Activists also worked on the passage of the CARE Act, which will ensure safe and appropriate designation to a patient’s caregiver during a hospital discharge. Congratulations to Nevada’s MS Activists on a successful year! n
6 RESEARCH
WORLDWIDE PROGRESSIVE MS EXPERTS GATHER IN SAN FRANCISCO TO SHARE WORK The International Progressive MS Alliance convened on May 11-13 in San Francisco for its second scientific congress with the goal of exploring how to further address the complex challenges of progressive MS. Throughout the meeting, over 100 experts came together to share knowledge, collaborate on potential solutions, and build a research infrastructure. They discussed a variety of topics including clinical trials of promising therapies, new approaches to repairing damage and performing cognitive rehabilitation, and leveraging technology to speed the search for new treatment.
MS CONNECTION: SUMMER 2016
nnBetter understanding of progression so treatments can be identified and tested; nnDesigning shorter, faster trials that measure patient outcomes; nnConducting trials to test agents that stop or reverse progression so new treatment choices can be made available to people faster; nnEvaluating new therapies and treatments that will manage symptoms and improve daily quality of life. Guests of the Society also joined the meeting in May, and learned about the progress of Challenge Award grants, critical ongoing projects that will drive advances in the field toward answers for progressive MS. They were able to connect personally with key scientists and other thoughtleaders in the progressive MS movement who are intimately involved with this program. This second congress was productive and powerful, giving those in attendance a great sense of understanding, promise, and hope. Progressive MS is being tackled by some of the best and brightest minds, backed by the support of those organizations and individuals most passionate about, and dedicated to, ultimately ending progressive MS.
The Alliance is a global initiative that aligns MS organizations from around the world including Australia, Belgium, Canada, Denmark, France, Germany, Ireland, Italy, Norway, the Netherlands, Spain, the United Kingdom, the United States and the MS International Federation. Connecting resources and experts worldwide, this organization, of which the National MS Society is a founding member, strives to find solutions for everyone living with progressive MS.
More than 2.3 million people currently live with MS, over one million of which have a progressive form of the disease. Despite advances in managing other forms of MS, progressive MS remains hard to understand and treat. This is why the International Progressive MS Alliance was created – “Our purpose is clear - to speed up the development of treatments for people with progressive MS,” said Professor Giancarlo Comi Director, Dept. of Neurology Scientific Institute San Raffaele, Italy.
The International Progressive MS Alliance currently has four research priorities:
To learn more about progressive MS research, visit www.nationalMSsociety.org/research. n
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NATIONALMSSOCIETY.ORG/CAL | 1-800-344-4867
LIVING WITH MS
WE ARE STRONGER THAN MS The new National MS Society awareness campaign Together We Are Stronger features people impacted by MS and how their fierce resolve has developed solutions that unite us and make us stronger than MS. This unique campaign was developed pro-bono in partnership with the renowned advertising agency Wieden+Kennedy, and was highlighted in March for millions of people to see on electronic billboards in New York City’s Times Square, Port Authority, Penn Station, and Macy’s Herald Square locations, among many other activities across the country. At WeAreStrongerThanMS.org, you can find these diverse, innovative solutions to overcoming the challenges of multiple sclerosis, demonstrating how together we are stronger than MS. Stories include that of Colorado resident, Dan Melfi, who says it is part of his family culture to fish. “My grandfather was a great fly fisherman into his late 90s,” remembers Dan. “It’s going be tough for me to stream fish from now on,” says Dan, referring to mobility challenges related to his 2009 MS diagnosis and the hike that is often required to access a stream. “I can’t stand for an extended period of time. And, I can’t fly fish where you stand out in the middle of the stream.” So Dan found and stocked a special vest — a
VIEW DAN’S VIDEO AT http://ntl.MS/keepfishing fishing coat — with everything he needs: “my fly book, bait, bug spray.” The coat is lightweight so Dan can wear it, with the strap of his folding chair slung over his shoulder, as he uses his arm crutches to travel from his car to the lake’s edge. “I don’t have the ability to stand. So I take the chair.” Dan loves that he can stay out fishing “for hours, because I have the chair. And my pole. And everything’s on my body.” “Once you get in the chair and you start casting, you’re fishing. You sit back and you look at life and it’s like, ‘wow, this is pretty cool.’”
“I’M STILL GETTING THE HOOK IN THE WATER.”
To learn more, visit WeAreStrongerThanMS.org. n Join actor Shemar Moore, extreme sports enthusiast Wendy Booker, and others in sharing powerful solutions with the MS community through videos, pictures and words. Every story connects us to each other and to the solutions that defy MS.
8 GIVING
GENEROUS GRANTMAKERS We are grateful to the foundation and corporate supporters who contributed $102,750 in grant awards February 1 – April 30, 2016. • $30,000 from the Hurlbut-Johnson Fund of the Silicon Valley Community Foundation to support wellness programming at The Marilyn Hilton MS Achievement Center at UCLA • $23,500 from Friends of the National Multiple Sclerosis Society in general operating support for the Northern Nevada office and to support Direct Financial Assistance in Northern Nevada and the Beyond Diagnosis program in Reno • $20,000 from the VWR Foundation to support the Chapter’s greatest needs • $10,000 from the San Manuel Band of Mission Indians to support the Connect to MS Care initiative in Riverside and San Bernardino counties • $7,500 from Lockheed Martin’s Aeronautics Employees Reaching Out (AERO) Club to support the Optimal Living with MS program • $5,000 from The Frank and Victoria Fertitta Foundation, Ltd to support the delivery of the Better Living program initiative in Greater Las Vegas • $5,000 from Union Pacific Foundation to support the Chapter’s Direct Financial Assistance programs • $1,750 from Acorda Therapeutics to support the Beyond Diagnosis program n
MS CONNECTION: SUMMER 2016
SCHOLARSHIPS
CONGRATULATIONS, SCHOLARS! JOCELYN JACOBO Wasco, CA Bakersfield College “I have wanted to be a registered nurse since the day my mother was diagnosed with MS. Seeing that your life can change in an instant made me realize that there is not enough time to dream about what you want to become. You have to make it a reality, which is what I’m doing.”
DANIELLE IRVIN Palmdale, CA Standbridge College Danielle experienced her first MS symptoms in high school. She continues to work hard to achieve her dream of becoming a physical therapy assistant. “I want to help people recover and give them motivation...I want people not to give up, but to fight for their wellness.”
LUKE D’ANGELO Moorpark, CA University of North Carolina at Chapel Hill Luke’s mother and uncle were diagnosed with MS when he was young. “Both of them always had hope. They seem stronger than anyone I know. They push me to become someone who will hopefully stop MS. I am interested in genetics, and through research, I feel like I can help find the problems and one day be a part of fixing them.”
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NATIONALMSSOCIETY.ORG/CAL | 1-800-344-4867
CHALLENGE WALK MS
TAKE THE CHALLENGE BY MEGAN O’NEAL It truly amazes me to see my fellow walkers complete 50 miles while also carrying the burdens and painful symptoms of MS. My first Challenge Walk MS was for my mom, but now I’ve found that the lines have blurred. Although the sign on my back says I walk “in honor of my mama,” I am walking for all of the wonderful people I have met over the years. Somehow, in just three short days, these strangers touch your heart and you really do become a family. We have an understanding for one another and share the same silent struggles that come with a life connected to MS. With 300 miles under my belt, I have come to realize that this event is not just about my mom; it’s something I do for my entire Challenge Walk MS family. I walk for my mom so one day we can find a cure. I walk for myself so my (eventual) children will grow up with a grandma. I walk for strangers so they never have to experience MS. But the important thing is, no matter who I walk for, I am walking. n
SAVE THE DATE the national multiple sclerosis society southern california and nevada chapter’s
41ST ANNUAL
THURSDAY, SEPTEMBER 29TH, 2016 HONORING LEW AND LISA HORNE
For early reservations please call 310-481-1108 or email Diane.Sant@nmss.org
Fresno
5th Annual
THURSDAY, SEPTEMBER 22ND, 2016 HONORING MAYOR ASHLEY SWEARENGIN
For early reservations please call 559-439-2154 or email Fotini.Alfieris@nmss.org
stay tuned for the dates of the nevada dinner of champions events, occurring this fall.
Take the challenge November 4 - 6 and join our community of strength and spirit! For three days and 50 miles, we will walk from Carlsbad to San Diego with one goal: to change the world for people with MS. Register today at www.myMSchallenge.com.
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MS CONNECTION: SUMMER 2016
WALK MS
TAKING STEPS IN THE RIGHT DIRECTION Thank you for participating in our 12 spring Walk MS events!
THANK YOU TO OUR GENEROUS SPONSORS
PRESENTING
DIAMOND PLATINUM
GOLD
OVER 16,000
PARTICIPANTS
“
WILL RAISE THE GOAL OF
$2.5 MILLION
“My father passed at age 56 from MS complications, and my kids never had the opportunity to meet him. In 2011, I was diagnosed with MS and my children see how each day is different for someone young trying to manage a family and fulltime job. Jacob, 13, and Allie, 12, chose Walk MS for their Mitzvah projects because it has impacted our family in so many ways. They used social media to educate and raise awareness of MS so people will understand how important it is to help find a cure. They also raised money to help local MS patients and further research to find a cure for MS.” —Elyse, Walk MS: Las Vegas
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! L L A F S I OIN US TH
SOUTH LAKE TAHOE SEPTEMBER 17, 2016 CAMP RICHARDSON
BAKERSFIELD
OCTOBER 29, 2016 THE PARK AT RIVER WALK
REGISTER TODAY AT WALK MS.ORG!
NATIONALMSSOCIETY.ORG/CAL | 1-800-344-4867
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BIKE MS
MARK TREKS 4 MS
You’ve heard it before – Bike MS is the journey of a lifetime with challenging, yet exciting routes. Taking on 100 miles is quite the accomplishment for anyone. But there’s one Bike MS: Vegas rider who has logged over 16,500 miles for the National MS Society in the past 27 years. It all happened by chance in 1989. Mark Beck stopped at a gas station in the desert to fuel up and came across a Bike MS flyer promoting the ride from Las Vegas to the London Bridge. “I had just bought a bike and thought this would validate the purchase,” he said. The first few months were not as easy as he expected. “I rode my first ten miles and was very sore. A coworker who also rode told me to just stay on the bike. So, I did and eventually it felt right.” So who would ride across the United States without having a personal connection to a cause? Mark is about to embark on his third cross country ride and over the years has raised $50,000 for the National MS Society! “When I started, I had no idea what MS was about. I was riding for my health until the Society connected me to a past marathon runner who went blind due to MS. For a few years, I rode for her. Then I started realizing that people I knew personally were affected by MS. In fact, one of my old friends from high school was diagnosed,” added Mark.
Because this is his third ride across the county, Mark knows it will get uncomfortable along the way. He also knows that he will get through it and to him, that’s how he earns the support he has received. “I may not personally know the majority of my donors, but their donations show how many people are affected by MS and hoping for a cure.” Mark has a history of cancer but fortunately is now in good health. “There’s no cure for MS yet, but we have research and we have hope. I’m amazed and inspired by the people I’ve met through Bike MS who’ve been affected by this disease; they are my motivation for riding.” You can follow Mark’s journey by visiting www.BeckTreks4MS. com. You can also help raise funds and awareness by participating in Bike MS: Vegas on September 24, 2016. The ride can be tough but to put it in perspective, the longest route is less than five percent of the route Mark Beck is traveling this summer. You’ve got this! Apprehensive about fundraising? Mark has some advice: “Don’t be afraid to ask for donations – become known as a Bike MS rider so that you become associated with the ride and people just know.” Take the first step to becoming a Bike MS rider by visiting bikemsvegas.org and registering for the event. n
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MS CONNECTION: SUMMER 2016
PROGRAMS CONNECTION COGNIFITNESS: POMONA
Fridays, October 7-28, 10:00am - 12:00pm Casa Colina Centers for Rehabilitation 255 East Bonita Ave, Pomona
RELATIONSHIP MATTERS: SOUTH LAKE TAHOE
July 9-10, 2016, The Ridge Resorts 400 Ridge Club Drive, Stateline, NV 89449
Maintaining a healthy relationship is hard. MS can make it even harder, but it doesn’t have to rule your relationship. This program helps you strengthen your partnership and minimize the impact of MS on your life together. The weekend workshop is open to any couple in a committed relationship, regardless of marital status. Through interactive group activities, you’ll learn and apply the needed skills to deal with common relationship challenges, including: • Communication and problem solving issues • Impact of MS on communication in a relationship • Using strategies as a couple to address challenges $50 per couple. This overnight destination weekend includes your hotel stay on Saturday night. There is a limited couple attendance. Upon registration, you will be notified if we have space available. Register at nationalmssociety.org/CAL or call 800-344-4867.
If you have difficulty focusing on tasks without getting distracted, finding words or finishing your sentences, or keeping track of activities and appointments, then CogniFitness is for you. This fun and interactive workshop will help you learn tricks to strengthen your cognitive skills and do things in a different way. Learn how to: facilitate focus and concentration, improve memory using new strategies, and improve organization, problem solving and critical thinking skills. Register at nationalmssociety.org/CAL or call 800-344-4867.
EXERCISE & MS: BAKERSFIELD
Saturdays, September 10 - December 10 9:00am - 10:30am Lyday’s Fitness, 6914 Downing Ave., Ste. A Exercise is important to general health and wellbeing, and it can also be helpful in managing symptoms associated with MS! This program will help you understand the importance of exercise and the positive impact it has for people with MS, identify their barriers to exercise and identify ways to navigate through them, and practice exercised based on an integrated approach to fitness. For more information or to register, call Christine Grontkowski at 661-321-9512 ext. 66401 or email christine.grontkowski@nmss.org.
NATIONALMSSOCIETY.ORG/CAL | 1-800-344-4867
PROGRAMS
BEYOND DIAGNOSIS: RENO Saturday, August 20 Renown Health, 1150 Mill St. Reno, NV 89502
If you have been diagnosed with MS in the past two years, this program will give you a chance to meet with MS health and wellness professionals in an open conversation about the disease and an opportunity to talk with others who are also newly diagnosed and share your questions and experiences.
FREE FROM FALLS 2: POMONA Wednesdays, September 7 - October 26 Casa Colina Centers for Rehabilitation 255 East Bonita Avenue
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
13 This program will help to: • Give you a better understanding of treatments to manage MS and its symptoms • Teach you how to integrate wellness practices into your life • Connect you with others who share similar experiences • Provide you with resources to help you better understand and manage life with MS Contact Linda Lott at 775-827-4257 for more information.
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. In Free From Falls Level 2, you will learn tips and tricks to prevent falls, and 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. Register now and prepare yourself for Falls Prevention Awareness Day as well as for the future. Register online at nationalMSsociety.org/CAL or call 800-344-4867.
14 WEBINARS AND PARTNERS IN MS CARE FEATURED PARTNER IN MS CARE CLEVELAND CLINIC The Cleveland Clinic Lou Ruvo Center for Brain Health is a unique and exciting concept in medicine: a medical center dedicated solely to the pursuit of more effective treatments for brain diseases and to the provision of stateof-the-art care for patients and their families affected by these diseases. Its world-class experts can help manage your symptoms and improve your function so you can enjoy the best possible quality of life with MS. The Mellen Program for MS at Lou Ruvo Center for Brain Health, Las Vegas, is a part of Cleveland Clinic, which is ranked among the nation’s top 5 hospitals by U.S. News & World Report.
MS CONNECTION: SUMMER 2016
WEBINARS
Understanding and Managing Your Spasticity Tuesday, July 12, 5:00 PM PST Spasticity is a condition in which certain muscles continuously and uncontrollably contract, causing stiffness and tightness of the muscles. This may produce painful spasms of extremities, and left untreated, can lead to serious complications on functional abilities. Get answers to your questions and more during this informative webinar. Workout Your Worries: Anxiety and Exercise in MS Tuesday, August 9, 2016, 5:00 PM PST If you live with MS, you are twice as likely to experience anxiety and mood disorders. Join psychologist Meghan Beier, Ph.D. and physical therapist Mandy Rohrig, PT, DPT for an interactive conversation about recognition of mood changes and managing them with physical activity.
OTHER PARTNERS IN MS CARE
Health Insurance: What Everyone Needs to Know Tuesday, September 13, 5:00 PM PST
Individual Specialists: n Amy Brenner, LCSW n Audrey Goldman, LMFT n Beatriz Coca, PhD n Cheryl Feldmann, PhD Specialty Facilities: n Casa Colina Hospital and Centers for Healthcare n Cleveland Clinic Nevada n Harbor-UCLA Medical Center n UCLA Health System n USC Health System
Get a basic overview of the different ways people with MS and their families can get and keep health insurance, how to plan for transitions, and what to expect as an enrollee in a private or public health insurance plan.
For more information, visit nationalMSsociety.org/CAL.
Register at nationalMSsociety.org/CAL
NATIONALMSSOCIETY.ORG/CAL | 1-800-344-4867
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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. PLEASE NOTE: Sometimes group meeting locations, times, and dates change. We highly suggest calling the leader at the number listed on the group before attending to confirm the meeting details.
AT-HOME TELEPHONE GROUP 3rd Wednesday, 1:00 pm Toll-free dial-in number: 1-888-279-3775, entry code 4001#
Downey Group 2 - Young Professionals Group for people in 20s - 40s. 2nd Saturday, 10:00 am, Rancho Los Amigos Rehabilitation Center Leaders: Sarah, 310-909-9272 or Beth, ypg@nmss.org Lakewood/Long Beach 3rd Sunday, 1:00 pm, May Boyer Park Leader: Fran, 562-925-4405, franitkoff@cs.com
LOS ANGELES COUNTY Antelope Valley 3rd Wednesday, 6:00 pm, Greenhouse Café Leader: Stacy, 704-303-5066 Boyle Heights/The Wellness Center @ LAC+USC --Spanish speaking group 3rd Saturday, 10:00 am, The Wellness Center at the Historic General Hospital Leader: Daphna, daphna.patel@gmail.com or Karla, 562-299-3685 (texts preferred) Central LA 4th Saturday, 12:00 pm, Hawthorne Library Leader: Brenda, 310-628-6771, bnlane1@aol.com Downey Group 1 - The Force MS Self-Help Group Thursdays, 10:00 am Rancho Los Amigos Rehabilitation Center Leader: Staci, 213-343-9962, peersms@aol.com
The mission of the Young Professionals Group (YPG) is to engage its members in community service, as well as educational programs and social events that promote awareness of MS in the community at large. Members of the YPG volunteered in the MS Lounge at this year’s Walk MS: Greater Los Angeles and are shown wearing their “Living with MS” t-shirts alongside others living with MS. These new shirts are an amazing way to help those affected by MS connect with one another before, during and after the event.
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MS CONNECTION: SUMMER 2016
SELF-HELP GROUPS Los Angeles 3rd Thursday, 6:00 pm, Fairfax Branch Library Leader: Michael, 323-939-9598 & Alison, 323-816-7606 Please call first to confirm meeting details. Monrovia/Pasadena 2nd Monday, 10:00 am, First Presbyterian Church Leader: Aynn, 626-303-4343 North Hollywood - Drumming Group Learn a unique way to express yourself. No musical experience needed. 2nd Saturday, 12:00 pm, Remo Drum Center. Leader: Beth, 818-219-1715 Please call first to confirm meeting details. Santa Clarita 2nd Thursday, 6:30 pm, Saint Kateri Catholic Church Leader: Eire, 661-297-6887 South Bay/Harbor City 3rd Tuesday, 4:15 pm, Gardena Mayme Dear Library. Leader: Pattie, 310-769-0694 Please call first to confirm meeting details. Tarzana/Northridge – Spanish Speaking Group 2nd Saturday, 9:00 am, Tarzana Community & Cultural Center Leader: Maria, 818-370-8073 Tarzana – Let’s Play social group 3rd Saturday, 12:00 pm, Tarzana Community Center Leader: Linda, 818-222-7678 West Covina 2nd & 4th Wednesdays, 11:00 am, Senior Center (North Building) Leader: Tadd, 626-962-7909 West LA 2nd Wednesday, 7:00 pm, Veteran’s Memorial Building Leader: Nancy, 310-999-8335 If you are interested in leading, please call Nancy!
West LA – Men’s Group 3rd Wednesday, 6:30 pm, Veteran’s Memorial Building, Leader: Larry, 310-926-1641
AT-HOME TELEPHONE GROUP CHANNEL ISLANDS
Arroyo Grande 2nd Tuesday, 6:00 pm, United Methodist Church Leader: Ellen, 805-343-6094 Ojai Valley Wallwalkers Lunch Meeting 4th Tuesday, 12:30 pm, Eggs N Potatoes Leader: Donna, 805-646-3750 & Tammy, 805-648-6402 Santa Barbara 2nd Wednesday, 12:30pm, Cody’s Cafe Leader: Michael, 805-886-3000 Simi Valley 1st Monday, 11:00 am, Cornerstone Church Leader: Dennis, 805-584-2526 & Tina, 805-581-2264 Thousand Oaks 2nd Monday, 9:30 am, Goebel Senior Adult Center Leader: Tina, 805-581-2264 & Ken, 818-518-4226 Ventura Last Friday, 11:30 am, Carrow’s Leader: Tammy, 805-648-6402 Ventura Social Group 3rd Thursday, 3:00 pm, Panera Bread in Ventura Leader: Tammy, 805-648-6402
INLAND EMPIRE & COACHELLA VALLEY Apple Valley/Victorville 1st Thursday, 10:00 am, Senior Select Advocate Apple Bear Center, Room #103 Leader: Katrina, 951-906-1752
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NATIONALMSSOCIETY.ORG/CAL | 1-800-344-4867
SELF-HELP GROUPS Colton 3rd Thursday, 9:00 am, Inland Empire Caregiver Association Leader: Sheila, stores@csusb.edu
Temecula 1st Monday, 10:00 am, Mary Phillips Senior Center Leaders: Maby, 760-562-4533 & Jacqueline (Spanish), 951-302-3529
Hemet 1st Wednesday, 10:00 am, Hemet Public Library Leader: Sarah, 760-580-0658
Temecula - Men’s Group Last Monday of every other month at 1:00 pm Location TBD Leader: Ric, 619-985-5736 Please call first to confirm meeting details.
Lake Arrowhead 1st Friday, 4:00 pm, Mountains Comm. Center Leader: Joyce, 909-337-7573 No meetings Dec-April due to winter weather. Murrieta - So Cal MS Outlaws 4th Wednesday, 10:00 am, Trinity Lutheran Church Leaders: TBD Ontario 1st Saturday, 10:00 am, Redeemer Lutheran Christian Church Leaders: Emily, 909-851-6204 & Kathy, 909-621-3519 Palm Desert 2nd Thursday, 1:00pm, Palm Desert Public Library Leader: Richard, 760-899-4174 Palm Springs 2nd Sunday, 12:00 pm, Billy Reed’s Restaurant Leader: Tony, 760-831-6365 Rancho Cucamonga - Moms with MS 2nd Tuesday, 10:00 am, Rancho Cucamonga Resource Center, Leader: Kim, awzmom@yahoo.com Riverside 1st Saturday, 10:00 am, Riverside Medical Clinic (lower level) Leader: Gilbert, 951-544-1441
Upland Last Wednesday, 10:00 am, Calvary Chapel Leaders: Denise, 909-519-4410. Yucaipa 3rd Tuesday, 2:00 pm, Good Shepherd Church Leaders: Clare, 909-795-5128 & Tom, 909-795-1717
NEVADA & NORTHEASTERN CALIFORNIA Las Vegas/Henderson - Oasis Group 2nd Tuesday, 6:00 pm, Cleveland Clinic Leader: Gina Brown: 702-274-9013; oasismsgroup@gmail.com Las Vegas - MS Lunch Club 1st Tuesday, 11:30 am, Town Center Lounge & Restaurant, must RSVP Leader: Carol, 702-480-1339 or mslunchclub@yahoo.com Las Vegas - Westside Stories 3rd Wednesday, 6:00 pm, HealthSouth Center Leader: Gaby, 702-328-6989 Las Vegas - Young People with MS Email msunder40group@yahoo.com for details or visit the MS Under 40 Group Facebook page. Reno/Sparks 3rd Thursday, 2:30 pm, Renown Medical Center, Sierra Tower Leader: Christine, 775-560-1215
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MS CONNECTION: SUMMER 2016
SELF-HELP GROUPS Reno/Sparks 2nd Wednesday, 10:00 am, Northern Nevada Medical Center Leader: Mary, 775-772-3404
Clovis/Fresno 3rd Saturday, 9:30 am, San Joaquin Rehab Hospital Leader: Yolanda, 559-908-4644
Reno – Caregiver Support Group 2nd Thursday, 6:00 pm, The Village at Iron Blossom Fitness Center Leader: Fred, 513-703-3306
Fresno – Newly Diagnosed/Working Professionals Group 3rd Wednesday, 6:00 pm, Sal’s Mexican Restaurant Leaders: Myrna, 559-349-0423 & Cherish, 559-287-3042
Reno – Young People with MS Under 40 3rd Wednesday, 5:30 pm, Swill Coffee House Leader: Dana, 775-843-0784 Truckee 2nd Thursday, 5:30 pm, Tahoe Forest Hospital Cafeteria Leader: Rick, 530-550-0654
SAN JOAQUIN VALLEY Bakersfield 1st Thursday, 7:00 pm, HealthSouth Rehab Hospital Leader: JoAnn, 661-872-1973 Bakersfield 2nd and 4th Wednesdays, 11:00 am Lorene’s Coffee Shop Leader: Ron, 661-833-0388 Bakersfield Spanish Speakers TBD Leader: Alfredo, 661-699-4171 Bakersfield - Young Professionals Group 4th Tuesday, 5:30pm Leader: Christine, 661-321-9512
Fresno – Spanish Speaking Group 3rd Saturday, 12:00pm, TBD Leader: Sharon, 559-579-4096 Hanford 1st Saturday, 10:00 am, First Christian Church Leaders: Debra, 559-585-8054 Tehachapi 2nd Thursday, 5:00 pm, Tehachapi Moose Lodge Leader: Linda, 661-822-7440 Tehachapi – Wheels in Motion 3rd Tuesday, 10:00 am, Kelcy’s Restaurant Leader: Linda, 661-822-7440 Visalia 2nd Saturday, 10:00 am, Kaweah Delta Rehab Leader: Mary Ann, 559-936-3960
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NATIONALMSSOCIETY.ORG/CAL | 1-800-344-4867
MEET THE STAFF! CHAPTER PRESIDENT Julie Kaufer, Esq.
DEVELOPMENT
Kari Boatner Marni Deckter Bernice Detig Amy Dittmore Joseph Grubbs Debra Gruen Sarah Hanson Laura Kanellos Elicia Lopez Katie LoBianco Kate McIntosh Nathan Micinski Jennifer Parkinson Rona Rosenberg Diane Sant Garrett Vander Leun
COMMUNITY DEVELOPMENT Fotini Alfieris, MA (San Joaquin Valley) Christine Grontkowski (Kern County) Ana Hernandez (San Joaquin Valley) Audra Hindes, MSEd, MHC (Los Angeles) Reeza Kang (Northern Nevada) Katherine Lee (Inland Empire) Kayla Peters (Inland Empire) Linda Lott (Northern Nevada) Angela VanBrackle, MSEd (Southern Nevada)
MARKETING & COMMUNICATION Emily Hazlett Nare Ovsepian Jenna Tucker
OPERATIONS
Espie Malanche Jessica Orozco
PROGRAMS & SERVICES Roxanna Flores, MA Sarah E. Kirwan, MSPA Diana Nolen Michelle Seyler, J.D. Nicole Stoltzfus
OUR OFFICES Los Angeles 5150 W. Goldleaf Circle, Ste 400, Los Angeles, CA 90056, 310-479-4456 The Wellness Center @ LAC+USC 1200 N. State Street, Los Angeles, CA 90033, 213-261-3685 Inland Empire 3110 E. Guasti Road, Suite 320 Ontario, CA 91761 909-949-1363
Northern Nevada 4600 Kietzke Lane, Suite K-225 Reno, NV 89502 775-329-7180
Kern County 1800 30th Street, Suite 105 Bakersfield, CA 93301 661-321-9512
San Joaquin Valley 7472 N. Fresno Street, Suite 210 Fresno, CA 93720 559-439-2154
Southern Nevada 2110 E. Flamingo, Suite 203 Las Vegas, NV 89119 702-736-7272
Southern California Chapter & Nevada Chapter 5150 W. Goldleaf Circle, Suite 400 Los Angeles, CA 90056
OFF MY WAVE.
Ocean Beach native and local sur f legend Steve Bettis was diagnosed with MS in 2006. Although sur fing is still central to his life, he hasn’t been able to get out on the water in 10 years. For a man whose daily routine always included a few waves, more than a decade out of the sur f is just too long. This is why the National MS Society teamed up with his buddy Rober t “Wingnut” Weaver and used vir tual reality to get Steve back on his wave. See their experience and find out how you can share yours at WeAreStrongerThanMS.org.
Together We Are Stronger