fall 2015 Pacific South Coast Chapter
MS Connection Newsletter hansen’s natural: 2015 bike ms bay to bay tour title sponsor Page 16
is your bike team ready? bike ms bay to bay tour is just around the corner
INSIDE 04 THIS ISSUE
new directions in diet & ms
06
16
19
ms rockstars
bike ms teams & virtual ride
family caregiver month
2
MS connection: fall 2015
“Every great dream begins with a dreamer. Always remember, you have within you the strength, the patience, and the passion to reach for the stars to change the world.� - Harriet Tubman
Connect with us online: MSpacific.org Like us: facebook.com/MSpacific Watch us: youtube.com/MSpacific
A NOTE FROM THE CHAPTER PRESIDENT
join the movement This year marked the 25th anniversary signing of the Americans with Disabilities Act (ADA) ensuring the civil rights of people with disabilities. The ADA has broken down barriers, increased accessibility, and allowed people affected by MS to live their best lives. Storytelling is a life-long advocacy tool you can use for in-district visits at your statehouses, in letter-writing campaigns and much more. Learn more about becoming an MS activist on page 20. We are excited about the lively fall season and look forward to seeing you at our numerous events and programs. Attend an event as a participant, in person or virtually, and encourage your friends and family to form a team to accomplish the journey together! Learn about Bike MS and our new Virtual Ride event on page 16. If you are unable to volunteer or participate in an event, learn about workplace giving on page 3. By setting up automatic payroll deductions through the United Way or Combined Federal Campaign, you can designate a gift of your choice to the chapter. See page 3 for more information. Take action and spread MS awareness by getting involved in one of our chapter events and programs! Gratefully,
Richard V Israel Chapter President Jas Arnold & Rich Israel
nationalmssociety.org | 1-800-344-4867
3
FUNDING THE MISSION
WORKPLACE GIVING
Do you participate in your company’s workplace giving campaign? It’s an easy way to make a tax-deductible donation to the chapter through payroll deductions. Ask your employer if they currently have a workplace giving campaign or encourage them to start one today! Your employer can invite an MS Ambassador to your company’s campaign kick-off to learn more about supporting the Society’s movement to create a world free of multiple sclerosis. There are a number of ways to join:
members of the U.S. Military Forces can support the Society through the CFC by designating their contribution to #36706.
• United Way Campaigns: United Way focuses on specific objectives such as education, income, health, and housing. Designate your gift to the Pacific South Coast Chapter, #95549.
• California State Employees Charitable Campaign (CSECC): In Orange County use #14139 and in San Diego County, use #24185.
• Combined Federal Campaigns (CFC): Federal government employees and
For more information contact Erich Foeckler at 760-448-8412 or erich.foeckler@nmss.org.
National Multiple Sclerosis Society
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.
Pacific South Coast Chapter 12121 Scripps Summit Drive, Suite 190 San Diego, CA 92131 1-800-344-4867 Board Chair: Cynthia Perazzo Chapter President: Richard V. Israel Editor & Design: Christine Wiley Associate Editor: Leslie Roach Associate Designer: Sheri Yee © 2015 National Multiple Sclerosis Society, Pacific South Coast Chapter
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.
4
MS connection: fall 2015
RESEARCH
NEW DIRECTIONS IN DIET AND MS BY NICHOLAS LAROCCA, PHD
To think that you might be able to change the course of multiple sclerosis, or at least relieve symptoms, by eating or not eating specific types of food is enticing. However, “the proof is in the pudding,” scientifically speaking, since studying diet is challenging. That’s why it’s been exciting to see how many researchers were trying to do just that at the American Academy of Neurology’s annual meeting, which took place in Washington D.C., this April. Diet and MS was the subject of numerous platform talks and poster sessions, showing that clinicians and researchers are asking the same questions we hear so often from people who live with MS.
DIET AND MS SYMPTOMS In a small study, Dr. Rocco Totaro and a team from the University of L’Aquila in Italy tested whether a six-week diet that was low in saturated animal fats, and high in antioxidants, would be associated with positive changes in body composition and fatigue in 17 people with relapsing-remitting MS. In their study, the participants’ percentage of body fat decreased, and their fatigue as measured by a clinical scale lessened significantly as well. We need more
COFFEE MAY LOWER THE RISK OF DEVELOPING MS, ALTHOUGH MORE RESEARCH IS NEEDED. and larger studies like this, to show how diet may impact symptoms that affect the lives of people with MS. What does it mean for you now? A healthy diet certainly can’t hurt, and it may even help both MS and general health. (Abstract P2.211)
MORE ON SALT We’re hearing more and more about the possibility that salt may increase the immune activity in the brain and spinal cord in MS. A team from the Network of Pediatric MS Centers showed that this may not be the case in children. Looking at salt intake prior to diagnosis among 174 children or adolescents with MS, compared with 337 people without the disease, they saw no increased risk of developing MS with excess sodium intake. It will be interesting to see if this finding is confirmed, and whether it helps us to understand if, when and how salt becomes a factor in MS. (Abstract S38.003)
5
nationalmssociety.org | 1-800-344-4867
COFFEE AND MS Previous studies have suggested that caffeine may protect against Alzheimer’s and Parkinson’s disease, but there haven’t been any definitive studies in MS thus far. So I was intrigued by a study by an international team led by Johns Hopkins University researcher Dr. Ellen Mowry, which looked at coffee consumption in two large data sets—in a group of 1,629 Swedish people with MS and 2,807 people without MS, as well as a group of 584 people with MS and 581 controls enrolled in the Kaiser Permanente health plan of Northern California. In the Swedish study, drinking six cups of coffee a day was associated with a reduced risk of developing MS, and four cups a day did the same in the American study. Studies like this may help us figure out how to prevent MS in the future. What this study doesn’t tell us is whether or how drinking coffee may impact MS in people who already have the disease, so it’s probably not a good idea to increase coffee consumption until we know more. (S45.004)
LOOKING IN THE GUT Gut bacteria is another area where research is increasing, and it presents the exciting possibility that probiotic strategies may ultimately be developed to treat MS. I’m pleased that a small pilot grant from the National MS Society helped launch the MS Microbiome Consortium, a collaboration of researchers in California, Colorado and New York who presented some
early findings from their analysis of blood and stool samples from people with MS treated with glatiramer acetate, untreated individuals and healthy controls. They found differences in gut bacteria between the treated and untreated individuals and also between those with MS and healthy controls. The team recently won a Collaborative MS Research Center Award from the Society to pursue this promising research. I’m eager to see more from this group, and to see how their findings can be translated into a way of stopping immune attacks in MS. (Abstract P2.205)
A NEW ERA Not so long ago, searching the medical literature for “diet and MS” yielded little. I’m thrilled to see that we are entering an era where diet and lifestyle are truly considered to be factors that can help lead to innovative treatments and ultimately free the world of MS. Visit www.nationalMSsociety.org/signup to sign up for MS eNews and stay up to date on MS research. n Nicholas LaRocca is the vice president of Health Care Delivery and Policy Research at the National MS Society. Originally published on MSconnection.org/blog.
6
MS connection: fall 2015
Celebrate with MS rockstars
Rock out!
Be a part of the shenanigans at the Celebration Run on November 1, 2015! Whether you’re an avid runner or a newbie looking for a challenge, we have what you need for training, fundraising, and a rockin’ good time! The Celebration Run is a premier Half Marathon & 10K that empowers each participant on his or her journey. This is more than just a race – it’s a celebration!
The MS Rockstars Training Program sponsored by Rehab United Includes:
• • • • • Remember, you don’t have to be a runner to be an • MS Rockstar! For more information, please contact Renata Sahagian at msrockstars@nmss.org, call • 760-448-8406, or visit MSrockstars.com.
$20 off Celebration Run registration fees Minimum of one group workout per week Detailed, flexible and personalized training Weekly training tips (videos & blog) Professional coaching Group socials (this is definitely the “work hard-play hard” crew) Awesome MS Rockstar swag and incentives
supporting the mission Maclaine Parish is an inspiring 14-year old who truly cares about creating a world free of MS. This summer, Maclaine volunteered as an intern working on our MS Dinner Auction, Challenge Walk MS, and programs for people affected by MS. Maclaine says, “After doing the Challenge Walk MS last year with my mom Heidi, who has MS, I decided that I wanted to do my part to help stop MS.” Not only has Maclaine given the gift of her time and talents, she is dedicated to fundraising for the Society. Last year, she won the Super Teen Top Fundraiser award for her dedicated fundraising efforts in the 3-day, 50-mile Challenge Walk MS. Maclaine is now walking a second time and is thrilled to be contributing to a cause so close to her heart. It’s exciting to have Maclaine serving as a philanthropist at such a young age and we hope she will inspire others to join the movement. If you are interested in participating in one of our upcoming events please call Linda Ingram at 760-448-8416 or email her at linda.ingram@nmss.org.
7
nationalmssociety.org | 1-800-344-4867
FUNDING THE MISSION
WE DID IT! $1.5 MILLION RAISED AT WALK MS!
Thank you to all of our 2015 event participants for helping reach our fundraising goal! We are so proud of everything our walkers, virtual walkers, sponsors and volunteers did through the campaign to reach the goal. Check out our incredible top teams and fundraisers who helped make this happen! TOP FUNDRAISERS BY SITE Lynn & Dick Gordon - $70,373 (Carlsbad) Bill & Kristi Bisch - $29,920 (Irvine) Mark Fischer - $11,005 (San Diego) OVERALL TOP TEAMS Team Dick Gordon - $70,323 (Carlsbad) Team Momentum - $36,230 (Irvine) Receptos - $30,425 (Carlsbad) Sempra Energy/SDG&E – $29,312 (San Diego) Team Evans - $26,526 (Carlsbad)
SAVE THE DATE FOR WALK MS 2016! April 23: NTC Park, San Diego April 30: UC Irvine TBD: Carlsbad, CA Registration for Walk MS will open November 2015 at MSwalk.com
SAN DIEGO/CARLSBAD TITLE SPONSOR
ORANGE COUNTY TITLE SPONSOR
DIVISION WINNERS Division 1 (100+ team members): Sempra Energy/SDG&E - $29,312 Team SDCCU - $11,503 Division 2 (50-99 team members): Team Momentum - $36,230 Receptos - $30,425 UCSD Walkers for a Cure - $13,055 Division 3 (26-49 team members): Team Evans - $26,526 Judy’s Tribe - $19,161 Team Arson - $11,760 Division 4 (11-25 team members): American Flyers for MS - $21,485 Team NMO - $10,905 Miles With Smiles - $6,944 Division 5 (4-10 team members): Team Dick Gordon - $70,323 Uncle Phil’s Feat & UltraStar Cinemas - $21,516 Clark Construction-Betty’s Builders - $7,500
8
MS connection: fall 2015
Mark Your Calendars Unless otherwise indicated, to register for any of the listed events please visit http:// calendar.MSpacific.org and select the date of the event or call (800) 344-4867 (800-FIGHT MS)
Telelearning: Preparing for MS Doctor Visits Tuesday, September 15, 4:00pm Thursday, September 17, 7:00pm Call in for this educational opportunity to learn tips to prepare for successful visits with your doctor. Kathy Costello, MSCN, Associate Vice President of Clinical Care, National MS Society shares ideas on how to build a true partnership with your provider.
Turkey Delivery Program
On October 1 we’ll begin accepting requests for turkey dinners or grocery gift cards to registered members with MS and their families who are either in financial need or have difficulty preparing a holiday meal. Thank you to Disney VoluntEARS for supporting this program.
Educational Scholarship Program Opens Soon!
Wednesday, September 30 6:00pm – 9:30pm The Elks Lodge Garden Grove
Enrollment for the 2016 National MS Society Carol and Bob Webster Memorial Scholarship Fund will open online October 1, 2015 for all qualified individuals who have MS or have a parent with MS, and will be attending an accredited postsecondary school. Eligibility has now been expanded to include applications for any year of undergraduate study. This also includes applications of subsequent award considerations for previously awarded recipients.
We invite all men living with MS to come be a part of this fun movie night. This is an exciting program to make new friends, eat a delicious dinner, and take part in interesting conversations.
Special thanks to these sponsors: Volunteers in Multiple Sclerosis (VIMS), McGrory Family fund of the Jewish Community Foundation, O.L. Halsell Foundation, and Walter J. and Betty C. Zable Foundation.
Boys’ Night Out – Movie Night
For more information on the awards and criteria to apply, please visit nationalMSsociety. org/scholarship or call 1-800-344-4867 and press ‘1’.
9
nationalmssociety.org | 1-800-344-4867
Scripps Lecture Series
Online Newly Diagnosed program
Wednesday, October 21, 6:30pm - 8:30pm Scripps Memorial Hospital, La Jolla
Thursday, November 12, 6:00pm – 7:30pm
Complementary & Alternative Treatments in MS
A diagnosis of MS can create many unexpected emotions that leave you with a strong need to understand the changes you are facing. 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. Dr. Crabtree will address the most common concerns for people who are newly diagnosed.
Join neurologist Charles Smith, MD for an informative seminar that will offer valuable information to people who want to better manage their MS symptoms and improve quality of life. To register, call 1-800-SCRIPPS (1-800-727-4777).
From Molecule to Miracle: An Overview of the Drug Discovery and Development Process Friday, October 23rd- Save the Date! Crown Plaza Hotel, Mission Valley Save the date for this educational forum hosted by California Partnership for Access to Treatment (CPAT). Keynote speaker Emily Burke, Ph.D., Director of Curriculum, BioTech Primer will speak about the process of drug discovery and development. An opportunity will be created for local patient advocates to voice their comments through a rapid response panel discussion, moderated by Rolf Bernirschke, founder of Legacy Health Strategies.
Web & Teleconference
Annual Sycuan Family Holiday Party Saturday, December 12– Save the Date! Golden Hall, San Diego 11:00am – 2:00pm Save the date for our annual holiday family gathering! Guests will be treated to a delicious meal and enjoy fabulous entertainment. More details to come in the invite to be mailed in November.
Annual Meeting of Members Saturday, January 30, 2016 – Save the Date! Laguna Cliffs Marriott – Dana Point More information will be available in December!
10
If you would like more information about support groups in your area, call 1-800-344-4867 and press ‘1’ or contact a Listed leader.
CONNECTION GROUPS We have long recognized our responsibility to respond to the emotional needs and challenges that MS imposes on individuals and their families. Experience and research have revealed that group support is an effective strategy to help people face matters related to change and loss, achieve personal insight, foster new hope, build self-esteem, and facilitate behavioral changes. We offer over 30 Connection Groups covering an array of topics. These connection groups bring together people who share a common life experience for support, education and mutual aid.
ORANGE COUNTY
Anaheim: En Español Familiares y amigos bienvenidos. La segunda martes de cada mes. Anaheim Adventist Church 900 S. Sunkist St, 6:30pm - 8:00pm Rosa Ferreras 714-758-0829 rosam58@me.com Susana Pérez 714-235-7570 sueperezg@yahoo.com Brea 1st Friday, 10:00am - noon Jim Langdon 714-392-2052 langdonjames1942@gmail.com Lisa Seifert 714-826-6393 mcbryde99@hotmail.com Corona Del Mar: Minimal Symptoms/Newly Diagnosed 2nd Wednesday, 10:30am - 12:30pm Sherri Brash 714-846-2064 Sherri1022@gmail.com Dana Point: Early MS 4th Thursday, 10:00am - noon Jerry Dowd 949-584-4619 gtdowd@gmail.com Susan Watson 949-493-1299 susanwatson2010@gmail.com Fullerton: Christian MS Support Group 2nd Tuesday, 7:00pm - 8:30pm Sara Minton 714-773-4332 irvinedrama@yahoo.com
Huntington Beach: Minimal Symptoms/Newly Diagnosed 2nd Wednesday, 10:00am - noon Jeanne Archibald 714-842-7198 novajeanne2@yahoo.com Priscilla Wolz 714-846-6526 pfwolz@aol.com Irvine: Walkers & Rollers 2nd Wednesday, 10:00am - noon Bonnie Richmond 949-677-4272 sambon@pacbell.net Mike Milne 949-322-3156 mmilne93@gmail.com Irvine: Survive & Thrive Men’s Group Only 3rd Tuesday, 11:00am - 12:30pm Bill Bisch 949-218-5020 bisch@cox.net Bob Verbarg 714-466-0724 bverbarg@cox.net Laguna Hills 1st Tuesday, 10:00am - noon Francine Grasso 949-278-6935 frannydo@gmail.com Lake Forest: MS with Christ 3rd Monday, 6:30pm - 8:00pm Cathy Varela 949-842-2296 David Corich 949-470-9020
Midway City 1st & 3rd Tuesdays 9:30am - 11:30am Pat Howard 714-968-0277 Linda Logan 714-374-0430 lindajohnson6735@yahoo.com Carolyn Cassell 714-846-0598 carolyncassell7@yahoo.com Mission Viejo: Early MS 2nd Wednesday, 6:30pm - 8:00pm Jerry Dowd 949-584-4619 gtdowd@gmail.com Susan Watson 949-493-1299 susanwatson2010@gmail.com Newport Beach 3rd Sunday, 2:00pm - 4:00pm Harriet Pavidis 714-839-5529 hap.bruce@aol.com Santa Ana: Man to Man 1st Wednesday, 10:00am - noon Jeffrey Blattner 714-472-0904 jbblattner@gmail.com Stanton 1st Tuesday, 12:30pm - 2:30pm Rosa Ferreras 714-758-0829 rosam58@me.com Yorba Linda: Family & Friends Welcome 2nd Monday & 4th Friday, 10:00am - noon Kathy Kelby 714-525-0686 kkacacia@aol.com Rob Lammers 714-528-8404 robert.retired@hotmail.com
nationalmssociety.org | 1-800-344-4867
SAN DIEGO
Chula Vista St. Marks Lutheran Church 850 Hilltop Dr. 3rd Wednesday, 11:00am - 1:00pm Adriana Flores 619-656-8098 font.ka@gmail.com
San Diego: I Can’t Remember Group National MS Society 12121 Scripps Summit Drive 1st Wednesday, 11:00am - 12:30pm Carol Rohan 858-755-2440 csrohan@crohan.com
Encinitas San Diego County Credit Union Community Room 501 North El Camino Real First Friday, 6:00pm - 8:00pm Melinda Brizendine 760-944-4549 melindabrizendine@gmail.com
San Diego (Clairemont/La Jolla) Denny’s Restaurant 4280 Clairemont Mesa Blvd. 1st Friday, 10:30am - 12:30pm Alicia Ring 858-456-8766/ 858-229-6600 aring24@san.rr.com
Escondido Joslyn Senior Center, Room 5 210 Park Avenue 3rd Wednesday, 1:00pm - 3:00pm Michele Easterling 760-805-6390 m.easterling68@gmail.com
San Diego: Men’s Group Kaiser Education Center San Diego 10990 San Diego Mission Road 1st Tuesday, 6:00pm Mike Kolender 858-274-7114 mdkolender@aol.com Marcus Brown 619-248-2667 marcusib@yahoo.com
Escondido: Christian Group HopeKeepers Escondido 4th Saturday, 11:00am - 1:00pm Cross Connection Church 1675 Seven Oakes Rd. Room 4 Jim Johnston 619-933-6523 hopekeeperjim@gmail.com
San Diego (Mid-City) Kaiser Education Center San Diego Oceanside 10990 San Diego Oceanside Library Mission Road 3861 Mission Avenue 2nd Wednesday, 12:00pm - 2:00pm 4th Monday, 2:00pm - 3:30pm Jane Schnabel 619-758-9470 Juanita Hamilton 760-754-1911 jane.schnabel@sbcglobal.net juanita.h@cox.net Linda Knapp 858-273-7835 Ramona chemobrain@san.rr.com 2nd Tuesday, 11:00am - noon Van Reeder 760-789-9129
Meet a Connection Group Leader: michele easterling
11 Spring Valley New Seasons Church 2300 Bancroft Drive 2nd Saturday, 12:30pm - 2:00pm Angela Kretschmar 619-303-7806 gela0726@gmail.com
professionally-led CONNECTION groups Where Do I Go From Here... A Group For Sharing & Learning 2nd Tuesday of Every Month 10:00am - noon Facilitator: Debbie Hornstein, MSW Neighborhood Community Ctr. 714-689-9613 Women’s Caregiver Group 2nd Wednesday of Every Month 6:30pm - 8:00pm Facilitator: Deborah LeFevre, MFT 714-689-9613 National MS Society Santa Ana Office 1221 E Dyer Road, Suite 140 Santa Ana, CA 92705
Michele is a native San Diegan (second generation). She was diagnosed with MS in June 1991 and there is nothing that keeps her from fighting the many obstacles of life. She began working when she was 15 until retiring in 2007. She was hit by a drunk driver in 1986 and became a young widow in August 2007. In November 2014, Michele started leading the Escondido MS Connection Group after being a co-leader of the group for several years. At the meetings, she provides information about medication alternatives, adaptable devices, exercises and upcoming MS events.
12
To attend any of the listed classes, a waiver is required. Please contact 1-800-344-4867 to request a waiver today.
HEALTH & WELLNESS CLASSES yoga
Aquatics
Costa Mesa Yoga Works 1835 Newport Blvd, #A208 Mondays, 1:00pm - 2:00pm
Carlsbad: Indoor Waterworks Aquatics 2704 Gateway Road Tuesdays 11:45am - 12:45pm
Dana Point Dana Point Community Center 34052 Del Obispo Road Wednesdays, 8:00am - 9:15am Fullerton Friends in Christ Lutheran Church 2311 E. Chapman Avenue Wednesdays, 10:30am - 11:30am Huntington Beach Yoga Works 301 Main Street Wednesdays, 1:00pm - 2:00pm
El Cajon: Outdoor/Indoor St. Madeline Sophie’s Center 2119 East Madison Avenue Mon, Wed & Fri 11:30am - 12:30pm Irvine: Indoor Arthritis Foundation Approved Class Waterworks Aquatics 25 Waterworks Way Tues & Thurs 10:30am - 11:15am
Santa Ana Goodwill Fitness Center 1601 E. St. Andrew Place Fridays, 9:30am - 10:30am San Diego Addie’s Personal Training Studio 4440 Ingraham St. Sundays, 10:00am - 11:00am $5 per session
Balance & strength Training
La Jolla Ability Rehab Specialists 737 Pearl St, #108 1st, 2nd, 3rd Tuesdays, 6:00pm - 6:45pm Costa Mesa Healthy Balance 1599 Superior Avenue, Suite B Thursdays, 10:30am - 11:30am
in your neighborhood Carlsbad: Peace, Love, and Yoga 2588 El Camino Real, Suite O Fridays, 11:45am - 12:45pm Fee based class. For more info please call 760-689-2272 or email ms@juliachenyoga.com. La Jolla: Yoga Scripps Memorial Hospital 9888 Genesee Avenue Thursdays, 9:00am - 10:00am $10 monthly fee Cardiac Rehab 858-626-6493 San Diego: MS FITT Addie’s Personal Training Studio 4440 Ingraham Street Fee-based class. Call 858-483-2711 for more information. San Diego: Pilates Comprehensive Therapy Service Inc. 5677 Oberlin Dr. Suite 106 Mandy Johnston 858-457-8419 $10 per class Fullerton: Indoor Aquatics North Orange County YMCA 2000 Youth Way Mon, Wed. & Fri,. 9:00am - 10:00am $6 per session Santa Ana: Chair Zumba Goodwill Fitness Center Tues. & Thur. 11:00am - noon $10 per session. Call 714-361-6180 for more information.
13
nationalmssociety.org | 1-800-344-4867
What’s Happening? california Research Forum
On August 6th and 7th, over 100 scientists and funded MS researchers attended the California MS Research Forum in San Francisco, CA. This unique event is the fourth one taking place since 2010 and connects funded MS researchers within California to share exciting research results, foster collaborations and communication, as well as attract and retain young investigators in the field. This is a collaborative effort of all three California chapters, and the amazing help of the California Collaborative Multiple Sclerosis Research Forum Committee. The committee is made up of talented scientists from renowned institutions like the Sanford Burnham Prebys Medical Discovery Institute, UCLA, USC, UCSF, UCI and more. We are confident with the combined efforts of groundbreaking researchers, we can stop disease progression, restore function and end MS forever.
Speakers and Committee members at the 2015 California Research Forum
Young Adults at the We Connect dinner social
We Connect: A Program for Young Adults Living with MS
This summer the Chapter conducted a 6-week program that brought over 20 young adults between the ages of 18 and 35 together to help manage the uncertainty of living with multiple sclerosis by sharing stories and enhancing knowledge of MS in an upbeat environment. Topics covered at the meetings included emotional and physical wellness, symptom management and treatment options, future planning and peer guidance. We are ecstatic to announce, as a result of this program, two new connection groups are starting this fall: San Diego Young Adults #SDYMS 2nd Wednesday, 6:30 pm – 8:00 pm Austin Aaro 760-443-5845 austin1472a@gmail.com Jessica Ford 301-775-0253 jess_534@yahoo.com Young and Strong Together Orange County 2nd Wednesday, 6:00 pm – 8:00 pm Ashlee Gallard 805-914-8434 abg_1193@yahoo.com Christy Horning 760-485-3174 christy.horning@yahoo.com
14
MS connection: fall 2015
d
29th annual MS Dinner auction November 21, 2015 e l | Saturday, e a | cMSdinnerauction.com ur Loews Coronado Bay Resort Saturday, November 21 LOEWS CORONADO BAY RESORT
Don’t miss San Diego’s premier charity event featuring over 700 auction items including... www.MSdinnerauction.com Don’t miss San Diego’s premier charity event featuring over 700 auction items including... Five-night stay at any Small Luxury Hotels of the World property
Two-night stay in a Deluxe Casita with private outdoor rock shower and Jacuzzi at the award-winning Nayara Hotel & Resort nestled against the Arenal Volcano in Costa Rica
Domestic and International roundtrip flights on United Airlines
Brewmaster dinner for 10 at BJ’s Brewhouse & Restaurant that includes tasting a dozen beers paired with a 5-course meal
Eight-day Rhine Getaway or Romantic Danube Cruise for two with Viking River Cruises
15
nationalmssociety.org | 1-800-344-4867
Join the Movement DO IT YOURSELF FUNDRAISNG
Use your talents & interests to raise funds for the National MS Society! There are endless ways to get involved including: • Horseshoe Tournament • Basketball, Tennis, Bowling, Softball etc. Tournament • Battle of the Bands • Chili Cook-off • Benefit Dinner • Car Wash • Casino Night • Concert • Concession Stand • Dress Down Day/Casual Day at Work • Golf Outing • Bake Sale • Holiday Gift Wrap • Motorcycle Ride for MS • Office Olympics • Pancake Breakfast • Pig Roast • Garage Sale • Talent Show • Yard work These events give you the opportunity to fundraise using your imagination and personal connections, helping the Society raise awareness and funds in creative new ways. The Society provides numerous materials to help make your fundraiser a success. Visit www.doityourselfMS.org for more information.
MUCKFEST MS LOS ANGELES 5K MUD OBSTACLE RUN Saturday, October 24, 2015 PRADO REGIONAL PARK, CHINO REGISTER TODAY: MUCKFESTMS.COM
16
MS connection: fall 2015
FUNDING THE MISSION
Bike MS Bay to Bay Tour 2015 Virtual Ride Event
Saturday, October 17, 2015 | Noon - 4:00pm Sheraton Carlsbad Resort & Spa
• I don’t own a bike • I can’t ride that far • I sunburn easily
• • • • •
Fundraise indoors Stationary cycles Great music Bay-to-Bay route on a big-screen Ride by yourself or form a team
It only takes one person to inspire hundreds—that’s the power behind being a team captain. Forming a Bike MS team is a great way to experience this event! The camaraderie and support you’ll feel from your team is like no other.
MAKE AN IMPACT! NO EXCUSES!
17
nationalmssociety.org | 1-800-344-4867
Follow these steps below to get started today!
1. Register your team name today on: biketofinishMS.com. It’s easy!
2. Enlist your colleagues, friends and family members to register as cyclists, virtual cyclists or volunteers to become an “Official Team.” (“Official” teams consist of 4 or more members and are included in team competitions. We welcome teams of any size!). 3. Be a cheerleader! Once team members have registered, send out emails welcoming them, congratulate those who reach fundraising milestones and create unique fundraising challenges! Team Perks & Incentives: Teaming up offers rewarding benefits. Benefits you may qualify for include team photos, onsite rider check-in and exclusive team lounges.
Top fundraiser/150 Club
Bike MS top fundraisers earn special perks for raising $2,000 or more. Perks include a top fundraiser jersey, a gold bib and access to the VIP Luxury Lounge. In addition, riders may earn membership into the 150 Club by ranking among the top 150 fundraisers. Rankings will be finalized on January 5, 2016 and qualifying members will enjoy special benefits and perks before, during and after the 2016 Bike MS event!
Team most: team top of the hill
Virtual ride event by Branka Billante
I was diagnosed with MS in 2006. I participated in my first Bike MS event in 2009 as a way to create awareness and fundraise to help find a cure for MS. I rode in Bike MS until 2012, after losing my balance and falling just short of the finish line. Due to my balance concerns, I feel more comfortable on a stationary bike versus riding on a road bike. The Bike MS Virtual event allows me to give back to the MS community and the support at the event is fantastic. I feel very lucky I am able to participate. Thanks to the medication (a daily injection) I am doing well and feel very fortunate.
“Due to my balance concerns, I feel more comfortable on a stationary bike versus riding on a road bike.”
Register Today: biketofinishMS.com
18 Volunteer Engagement
MS connection: fall 2015
There are many volunteer opportunities available for groups as well as individuals. We need medical support volunteers at festival sites and rest stops, as well as volunteers at rider check-in and course marshals at many other locations. Register at www.biketofinishMS.com.
Challenge Walk MS Team The Fabulous Angels
Challenge Walk MS Come and support our dedicated walkers as they journey 50 miles from Carlsbad to San Diego on September 25-27. Volunteer one, two or all three days and support the vision to create a world free of MS. Register at www.myMSchallenge.com.
volunteerism pays Join our Volunteer Leadership Team which is a group of volunteers who seek out paid volunteer opportunities for the chapter. This is a way to volunteer and earn much needed funds for individuals with MS. There are some exciting opportunities coming up. Contact casvolunteerleaders@nmss.org to learn more.
internship
Bike MS WE NEED YOU to volunteer at Bike MS on October 17-18! Support the 2,500 cyclists riding from Irvine to San Diego.
Are you looking for an internship or want to beef up your college application or your resume? Interns as well as office volunteers play an important role at the chapter in fulfilling our mission.
Ayeh Alnaieb
Contact Linda Ingram at 760-448-8416 or linda.ingram@nmss.org.
19
nationalmssociety.org | 1-800-344-4867
November is National Family Caregiver Month! We recognize the loving efforts of family caregivers all year long; however, National Family Caregiver Month, designated in November, is a special time to educate and raise awareness around caregiver issues as well as increase support for the vital role they play.
FAMILY RESPITE CARE PROGRAM Being a family caregiver is an expression of love and support for the person you care for. As a family caregiver, it is important to care for yourself too. Respite care can help provide you with the time you need to do just that. The National MS Society partners with local Caregiver Resource Centers to offer our Family Respite Care Program. Through this program, caregivers are linked to a family consultant who can help assess and arrange for help in the home with a licensed home health agency to provide tasks such as light chore services, meal preparation and running errands. Short-term grants are offered to eligible families in need on a first-come, firstserve basis. This may be just what you need to help improve the health of your whole family. Every year, California’s nonprofit Caregiver Resource Centers (CRCs), serve more than 14,000 families and -caregivers of adults
affected by chronic and debilitating health conditions. The centers listed below provide core services to families and caregivers ranging from counseling and care planning, to legal/financial consulting and respite, at low or no cost. Thank you to our generous donor, the Zankel Foundation for helping to make this program possible. For more information and for other valuable resources available to you, call 1-800-344-4867 and press “1.� Caregiver Resource Center of Orange (Serving Orange County) 130 W. Bastanchury, Fullerton, CA 92835, 1 (800) 543-8312 , www.caregiveroc.org Southern Caregiver Resource Center (Serving San Diego and Imperial Counties) 3675 Ruffin Rd, Ste. 230, San Diego, CA 92123 1 (800) 827-1008, www.caregivercenter.org
20
MS connection: fall 2015
Advocacy
Become a District Activist Leader! Have you met with your elected official and shared how MS affects you? Are you interested in growing relationships to keep people with MS at the front of the minds of our elected officials as they consider legislation? Lead the way in your community by becoming a volunteer District Activist Leader! As a District Activist Leader, you will build and foster critical relationships with the elected officials in your legislative district. You will serve as a liaison between these officials and the Society, helping to develop a reliable grassroots movement across the state and the country. Through this volunteer opportunity you will take a leadership role in engaging with elected officials via multiple avenues to help foster a relationship between MS activists and elected officials. You will collaborate with your local Government Relations Committee to identify priority legislative issues and lead the way in maintaining an advocacy presence with the state legislature and in the community. Some of the other responsibilities will include attending MS State Action Days and/or Public Policy Conference when possible, as well as attending town hall meetings and other public forums to engage on issues that impact people affected by MS. In order to build relationships with elected officials, District Activist Leaders will monitor and track the elected official’s district activities and public events by receiving elected official’s email or mail communications. You will help
San Diego Senator, Marty Block & MS activists build the MS movement’s profile of elected officials by providing key biographical data and information to Society government relations staff. You will conduct in-district legislative visits when needed and raise awareness of MS policy issues by utilizing multiple media strategies, tools for which will be provided by the chapter. As a District Activist Leader, you will become the personal face of MS for your elected official, helping share Society priorities, the impact of MS and most importantly your personal story. District Activist Leaders are driving change online, in their communities and on Capitol Hill each year – and each year our numbers grow as MS activists are empowered to take the “next step” in their advocacy journey. Interested in becoming a District Activist Leader or want to learn more? Contact Aarushi Malhotra at 714-689-9613 or email aarushi.malhotra@nmss.org.
21
nationalmssociety.org | 1-800-344-4867
FUNDING THE MISSION
Have you Made a gift this year? DOUBLE YOUR DONATION! Here’s How: If you have sent a gift to the National MS Society, we want to not only thank you for your generous contribution, but also let you know that you could qualify for a matching gift! Your support can make an even bigger difference for people living with MS in our community. Gifts you have made or will make can be matched, dollar-for-dollar through your company’s matching gift program. Many companies have matching gift and volunteer incentive programs to maximize their financial contributions to non-profit organizations. This means they will match their employees’ donations to the Society, bringing us closer to a world free of MS.
GET SOCIAL! CONNECT WITH US ONLINE!
Simply ask your human resource department if your company has a matching gift program. Follow the procedures outlined by your company’s matching gifts program. Once our staff receives your matching gift paperwork, we will send confirmation to your company. If you are fundraising for the National Multiple Sclerosis Society, ask your donors to visit nationalMSsociety.org/EmployerMatch or contact their company’s HR department to learn about their matching gifts policies and procedures. Please don’t delay. Send your gift today and make an even greater impact! Contact Maeve Doolittle at 760-448-8419 or maeve.doolittle@nmss.org for more information.
facebook.com/MSpacific facebook.com/ChallengeWalkMS facebook.com/MSDinnerAuction facebook.com/BaytoBay facebook.com/MSWalk facebook.com/MSRockstars facebook.com/MuckFest instagram.com/PacSouthCoastMS Instagram.com/BikeMSBay2Bay twitter.com/BikeMS twitter.com/MSRockstars youtube.com/MSpacific
MS connection: fall 2015
PAID ADVERTISEMENT SUPPORT FOR YOUR MS IS LOOKING UP The Above MS™ program from Biogen™ is here for you with tips, tools, and inspiration for your multiple sclerosis (MS)—and so much more. There are many benefits to joining the Above MS program. As a member, you’ll get extra help from those who understand MS, including: • One-on-one MS support over the phone • A community of peers • Tips from people living with MS who are also experts in a relevant field, like cooking and exercise • Information about Biogen relapsing MS treatment options • Financial and insurance support, if eligible • 24/7 support from Nurse Educators Please keep in mind that your doctor is always your primary resource when it comes to your MS and your treatment.
Get extra support from the Above MS program. Sign up now at AboveMS.com or call 1-800-456-2255.
© 2015 Biogen. All rights reserved. 07/15 FCH-US-0890
FCH-US-0890-AboveMSAd_5.25x8.25.indd 1
8/13/15 1:23 PM
PAID ADVERTISEMENT Pregnant and have Multiple Sclerosis? You may be wondering... • Will MS affect my developing baby? • Is my MS medication OK to take during pregnancy or while breastfeeding? MotherToBaby counselors provide FREE up-to-date, evidence-based information about pregnancy or breastfeeding and: • Prescription and over-the-counter medications. • Infections and diseases, like MS, and much more... You can also help us learn even more about MS and pregnancy by volunteering for our MS and Pregnancy Study. The study involves telephone interviews only—No needles, No Medications, and No changes to your routine are required. To get your questions answered about MS and MS medications during pregnancy or to volunteer for our study, call toll-FREE (877) 311-8972 or visit PregnancyStudies.org.
Find us on: @MotherToBaby
MotherToBaby Pregnancy Studies are conducted by the Organization of Teratology Information Specialists (OTIS). OTIS and MotherToBaby are suggested resources by many agencies including the Centers for Disease Control and Prevention (CDC) and the Food and Drug Administration (FDA) Office of Women’s Health.
CONNECT WITH THE CARE YOU NEED EVERY CONNECTION COUNTS
Find the care you need. Get connected!
Managing MS is an ongoing process, beginning with the very first symptoms and continuing throughout life with the disease. We can connect you with highlyskilled professionals knowledgeable about MS. • Connect with MS Specialty Care-doctors, counselors, social workers, physical therapists and more! • Ask an MS Navigator for help to navigate the challenges of MS. Find personalized answers to your unique needs, up-to-date information, referrals and practical resources. • Learn more about research and clinical trials. • Advocate for better health care, research funding and policy initiatives that are important to you.
1-800-FIGHT-MS (344-4867)
MSpacific.org
Pacific South Coast Chapter 12121 Scripps Summit Drive, Suite 190 San Diego, CA 92131
NON-PROFIT ORGANIZATION U.S. POSTAGE PAID San Diego, CA Permit # 451
mark your
calendars SeptEmber 15 & 17: Preparing for MS Doctor Visits Telelearning 25-27: Challenge Walk MS 30: Boys Night Out
October 17-18: 21: 23:
Bike MS Bay to Bay Tour Sponsored by Hansen’s Natural Scripps Lecture Series: Complemetary & Alternative Treatments in MS From Molecule to Miracle: An Overview of the Drug Discovery & Development Process
24:
Muckfest MS Los Angeles
November 1:
MS Rockstars Celebration Run
12: Online Newly Diagnosed Program 21: MS Dinner Auction: Sponsored by Mitsubishi
December 12:
Annual Sycuan Family Holiday Party
january 30:
Annual Meeting of Members