SPRING 2015 Pacific South Coast Chapter
MS Connection Newsletter
2014 walk ms most inspirational walkers
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INSIDE 06 THIS ISSUE
lawry circle
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mark your calendars for upcoming events
volunteers of the year
research designing solutions
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MS connection: SPRING 2015
A NOTE FROM THE CHAPTER PRESIDENT & BOARD CHAIR
How are you celebratING MS Awareness? In 2014, the National Multiple Sclerosis Society funded $50.2 million in research projects, the largest amount ever dedicated in a single year. This year brings a strong commitment and focus to funding advanced research, specifically nervous system repair, progressive MS, and lifestyle and wellness factors.
HaveHaveyouyou ever dreamed ever dreamed about about running/walking a marathon or half running/walking a amarathon or marathon? What about relay with At our Annual Meeting in January, we heard about breakthrough some friends? We can help you progress and advancements in MS research. This inspiring event half make marathon? What about a together 240 participants who got involved in stimulating it happen! brought conversations and presented the opportunity to recognize relay with some friends? outstanding achievements we have accomplished as Join the MS Rockstars at the San Diego Rock ‘n’ Roll Marathon on May 31, 2015. Learn more by visiting: MSrockstars.com
Connect with us online: MSpacific.org Like us: facebook.com/MSpacific Watch us: youtube.com/MSpacific
On the Cover: Left to Right: Blake Stewart, Debra Pagliasotti, Denise Boucher
a chapter.
The month of March focuses on spreading awareness about MS and sharing success stories with the community. We are dedicated to educating our members and the public, providing a wealth of resources for those affected by MS and continuing to fuel progress to change lives. Visit our chapter website at MSpacific.org for more resources and information about MS. Learn how you can join the movement to help ensure people affected by MS live their best lives as we stop MS in its tracks, restore what has been lost, and end MS forever! Cheers,
Richard V. Israel Chapter President
Cynthia Perazzo
Chair, Board of Trustees
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Living With MS
Making Family Connections Because multiple sclerosis affects entire families, the Society is committed to serving as a resource for families who face the challenges of living with MS to connect with one another. On December 13, 2014, families impacted by MS from across the chapter joined together to meet up with old friends and make new ones at our Annual Sycuan Holiday Party. This festive chapter tradition, sponsored by Sycuan Band of the Kumeyaay Nation, hosted almost 700 people and featured a full buffet meal. Lively entertainment set the holiday mood and a special visitor from the North Pole took time from his busy schedule to meet, greet, and give gifts to the children in attendance. A member shares, “For being a first-time guest, it was very special to be able to share this
National Multiple Sclerosis Society 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: Rosie Chuong Associate Editor: Leslie Roach Associate Designer: Sheri Yee © 2015 National Multiple Sclerosis Society, Pacific South Coast Chapter
experience with the people who have been there for me every step of the way and with the help of the MS organization, I thank you!” We are proud to have such wonderful community partners who have so graciously donated their time and resources. A special thanks to Sycuan Band of Kumeyaay Nation, Dr. Seuss Fund at the San Diego Foundation, Ace Parking, Receptos, Mitchell 1, National Pen, Boy Scout Troop 45, Raphael’s Party Rentals, Tom Karlo, John Butcher, Mitch Murphy Photography, Sam Wagstaff Photography, Music Machine of Bonita Vista High School and Dance and Company Performing Arts Studio. Looking for ways to connect with your family? Visit page 24 for our calendar of events or learn more at MSpacific.org for upcoming programs and events! 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: SPRING 2015
fueling the mission
WALK MS most inspirational walkers
Blake Stewart
Debra Pagliasotti and team
Blake Stewart (Carlsbad, 2014)
Debra Pagliasotti (San Diego, 2014)
Blake Stewart was diagnosed with MS in 2010, when his son was four months old and his daughter was two. This led Blake to join the Walk MS community in an effort to find a cure.
Debra Pagliassotti and her team, “Walking For Deb,” have made a personal commitment to do something about MS since 2008. She faced obstacles last year, but didn’t let it slow her or her team down. Debra’s 15-person team rallied around her this year to continue to show support for her and everyone affected by MS.
In 2011, his team “Walking For Our Future” was created. The team walks for Blake, his family, friends, and all who are affected by this disease. Blake walks because he wants his children to have a future free of MS. “I walk because I have thoughts of not having the ability to play with my kids the way I want to. I walk because I want my kids to have a future free of MS. My future is now,” he said. With the overwhelming support of family and friends, Blake’s team has grown from 16 walkers raising $2,000 in 2011 to 42 1/2 walkers (baby included) raising more than $5,000 in 2014!
Debra has personally raised more than $15,000 and her team has helped raise more than $30,000. When asked about who inspires her most, Debra says, “My neighbors and family make up this team and they inspire me and lift ME up. They are great.” Her trick to being a stellar fundraiser year after year? Debra participates in an annual theater event! “The Eastbuff Children’s Community Theater donates all proceeds from its snack bar, theater grams, and flower sales to Walk MS Irvine each year in my honor!”
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nationalmssociety.org | 1-800-344-4867
Join Us For a Walk in the Water! Splish splash for MS! You can join us at one (or both) of our Water Walks! Each Water Walk features a fun hour in the pool with pizza and more! The Water Walkers are a group of individuals taking part in the Society’s aqua exercise program who started this event held in conjunction with Walk MS. Register today at MSwalk.com
Denise Boucher
WATER WORKS IRVINE 25 Waterworks Way Irvine, CA 92618 Friday, April 10, 2015 9:30am – 1:00pm
SAN DIEGO STATE AQUAPLEX 5375 Remington Road San Diego, CA 92115 Friday, April 24, 2015 8:00am – 12:00pm
Denise Boucher (San Diego, 2014) Before Denise Boucher was diagnosed with MS in 1996 at the age of 25, she enjoyed a life filled with travel from New Hampshire to California and several states in-between a career, and a full social calendar. Before she retired, Denise worked in the advertising industry for more than 20 years and her work ethic and spirit continues to drive her involvement in volunteering for her community. In 2010, her best friend, Barbie, approached her with a New Year’s resolution to participate in Walk MS and since then, they haven’t looked back. With a catchy name, “TEAM #OnMyNerves” has grown and now includes two furry dog members - Sammy and George. Denise’s success stems from her willingness to fearlessly reach out to friends, family, and business associates through emails and social media posts. With painted team t-shirts and large poster signs, you cannot miss this positively vibrant team made of diverse members from England, France, Arizona and California!
SPONSORED BY
WALK MS IRVINE Sat: April 11, 2015
WALK MS CARLSBAD Sun: April 19, 2015 WALK MS SAN DIEGO Sat: April 25, 2015
Join Walk MS today!
Visit MSwalk.com or call (800) 486-6762.
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MS connection: SPRING 2015
It’s tax time. are you looking for ways to save money? Giving is truly better than receiving, especially when your generosity can provide income tax benefits. There are a lot of good reasons to make donations to the National MS Society, but most boil down to one simple fact: giving feels good. It is no surprise, then, that many Americans give money or property to organizations they care about and some give quite a bit. Whether you are a minor donor or a philanthropist, you probably give because you want to help. Still, taking maximum advantage of tax breaks for your charitable efforts can make a difference to your bottom line. Gift and estate planning with the Society can provide the peace of mind that comes with settling your affairs, as well as the satisfaction of knowing that you are supporting the Society. In fact, a planned gift may help you give more to the National MS Society than you thought possible, while still providing you or someone you love with favorable financial and/or tax benefits. A planned gift may help you increase income, reduce taxes, avoid capital gains tax, or pass
assets to family at a reduced tax cost. Sylvia Lawry founded the National Multiple Sclerosis Society in 1946, wanting to cure her brother Bernard, who was living with MS. She led the Society as Chief Executive until 1982. Lawry Circle members demonstrate their commitment to improving the lives of those affected by MS by establishing a deferred gift for the Society through their will, trust or estate plan. Through their generosity, Lawry Circle members offer a lasting legacy of support to all people affected by MS. For more information about how to make the most out of your donations or to learn more about our planned giving club, the Lawry Circle, please contact Erich Foeckler at (760) 448-8412.
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nationalmssociety.org | 1-800-344-4867
Mark your calendar
local events San Diego ms Symposium Saturday, March 21 8:30am – 12:30pm Hilton Mission Valley (NEW LOCATION!) 901 Camino Del Rio South, San Diego, CA Join Dr. Corey-Bloom from UCSD and Dr. Elizabeth Crabtree from UCSF as they talk about Hot Topics in MS such as diet and nutrition, vitamin D, microbiome, plasma exchange and treatment options. To register, please call 1-800-344-4867 (1-800-FIGHT-MS) and press “1” or visit http://calendar.mspacific.org and click on March 21, 2015.
Boys’ Night Out Wednesday, April 29 6:00pm – 9:00pm The Elks Lodge 11551 Trask Avenue, Garden Grove We invite all men living with MS to be a part of this fun get-together. This is an opportunity to have interesting conversations, make new friends and enjoy a delicious dinner. To get more information, please email Aarushi Malhotra at aarushi.malhotra@nmss.org or call 714-689-9613.
To register, please call 1-800-344-4867 (1-800-FIGHT-MS) and press “1” or visit http://calendar.mspacific.org and click on April 29, 2015.
Professionally Led Group for Young Adults Coming early summer This 6-week long program is specifically designed to help young adults between the ages of 18 and 35 manage the uncertainty of living with multiple sclerosis by sharing good times, laughter and information in a positive and upbeat environment. For more information and to register, please call Aarushi Malhotra at 714-689-9613 or email at aarushi.malhotra@nmss.org.
Advocacy 101 Online Webinar Thursday, May 14 6:30 – 7:30 p.m. Becoming an MS Activist is a simple way to improve the lives of others living with MS. Learn about tools and resources to share your story and influence your elected officials to effect real change in public policy. Register at www.nationalMSsociety.org/advocacy101.
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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.
Mark your calendar
local events Moving Forward: Program for the Newly Diagnosed Saturday, May 9 8:30am – 12:00pm Orange County If you have been diagnosed with MS in the last three years, this program is designed for you. Learn about treatment options and the emotional and physical aspects of MS from community experts in the respective fields. This is also an opportunity to meet others living with a new diagnosis. To register, please call 1-800-344-4867 (1-800-FIGHT-MS) and press “1” or visit http://calendar.mspacific.org and click on May 9, 2015.
Day at the Bay Saturday, May 16 - Mission Bay Saturday, June 6 - Dana Point Join other families affected by MS for a day of fun in the sun. Enjoy adaptive sailing, BBQ lunch, and other fun activities. More information coming in April!
register for our telelearning series by calling 1-800-344-4867 (800-FIGHT-MS) AND press “1.”
TELELEARNING SERIES: Managing MS Bladder and Bowel Symptoms Thursday, March 19, 2015 7-8pm
Learn strategies for managing bowel and bladder symptoms in MS with Pat Kennedy, RN, CNP, MSCN, Can Do Multiple Sclerosis and Dr. Marlene Murphy Setzko of the Mandell MS Center.
The Essential Guide to Flexible and Home-Based Jobs Thursday, March 26, 2015 5-6pm
What are the latest trends in the work-fromhome and flexible job market? Brie Reynolds from Flexjobs.com, will walk participants through the trends, top career fields and most common jobs available, who’s hiring, and how to find these flexible opportunities. Learn how to avoid common job scams and tips for successful job applications.
Sex Ed for Grownups-Intimacy in MS Tuesday, May 19, 2015 4-5pm Thursday, May 21, 2015 7-8pm
The effrects of MS can change a romantic relationship.Learn from Dr. Timothy Hlavinka, Urology San Antonio and Dr. Linda Mona, Long Beach Veterans Administration Hospital how to maintain or build intimacy when MS is in the picture.
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nationalmssociety.org | 1-800-344-4867
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 has 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 29 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, 6:30 - 8pm Rosa Ferreras 714-758-0829 rosam58@me.com Susana Pérez 714-235-7570 sueperezg@yahoo.com Brea 1st Friday, 10:00am - 12:00pm Jim Langdon 714-392-2052 langdon.james1942@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, 10am - 12pm 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, 10am - 12pm Jeanne Archibald 714-842-7198 novajeanne2@yahoo.com Priscilla Wolz 714-846-6526 pfwolz@aol.com Huntington Beach: Living with MS 1st Tuesday, 6:00 - 8:00pm Laurie Cable 714-969-8298 lderble@aol.com Irvine: Walkers & Rollers 2nd Wednesday, 10am - 12pm 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, 10am - 12pm Francine Grasso 949-278-6935 frannydo@gmail.com Lake Forest: MS with Christ 3rd Monday, 6:30 - 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, 6:30 - 8pm Jerry Dowd 949-584-4619 gtdowd@gmail.com Susan Watson 949-493-1299 susanwatson2010@gmail.com Newport Beach 3rd Sunday, 2 - 4pm Harriet Pavidis 714-839-5529 hap.bruce@aol.com Santa Ana: Man to Man 1st Wednesday, 10am-12pm Jeffrey Blattner 714-472-0904 jbblattner@gmail.com Stanton 1st Tuesday, 12:30 - 2:30pm Rosa Ferreras 714-758-0829 rosam58@me.com Yorba Linda: Family & Friends Welcome 2nd Monday & 4th Friday, 10:00am - 12:00pm Kathy Kelby 714-525-0686 kkacacia@aol.com Rob Lammers 714-528-8404 robert.retired@hotmail.com
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To attend any of the listed classes, a waiver is required. Please contact 1-800-344-4867 to request a waiver today.
Chula Vista St. Marks Lutheran Church 850 Hilltop Dr. 3rd Wednesday, 11am - 1pm Adriana Flores 619-656-8098 font.Ra@gmail.com
San Diego: I Can’t Remember Group National MS Society 12121 Scripps Summit Drive 1st Wednesday, 11am - 12:30pm Carol Rohan 858-755-2440 csrohan@crohan.com
Encinitas San Diego County Credit Union Community Room 501 North El Camino Real Last Friday, 6 - 8pm Melinda Brizendine 760-944-4549 melindabrizendine@gmail.com
San Diego (Clairemont/La Jolla) Denny’s Restaurant 4280 Clairemont Mesa Blvd. 1st Thursday, 9:30 - 11:30am Alicia Ring 858-456-8766/ 858-229-6600 aring24@san.rr.com
Escondido Joslyn Senior Center, Room 5 210 Park Avenue 3rd Wednesday, 1 - 3pm 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, 11am - 1pm Cross Connection Church 1675 Seven Oakes Rd. Room 4 Jim Johnston 619-933-6523 hopekeeperjim@gmail.com Oceanside Oceanside Library 3861 Mission Avenue 2nd Wednesday, 12 - 2pm Juanita Hamilton 760-754-1911 juanita.h@cox.net Ramona 2nd Tuesday, 11am - 12pm Van Reeder 760-789-9129
San Diego (Mid-City) Kaiser Education Center San Diego 10990 San Diego Mission Road 4th Monday, 2:00 - 3:30pm Jane Schnabel 619-758-9470 jane.schnabel@sbcglobal.net Linda Knapp 858-273-7835 chemobrain@san.rr.com
Meet a Connection Group Leader: marcus brown
Spring Valley New Seasons Church 2300 Bancroft Drive 2nd Saturday, 12:30 - 2pm 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 - 12:00pm Facilitator: Debbie Hornstein, MSW Neighborhood Community Ctr. 714-689-9613 Women’s Caregiver Group 2nd Wednesday of Every Month 6:30 - 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
Marcus is a native San Diegan and was diagnosed with MS in April 2010. He taught computer applications at the Houston Community College until relocating to San Diego in September 2010, where he and his two sons became involved with the chapter by participating in various events and programs like Walk MS, Connection Groups, Day at the Bay, Holiday Party and Symposiums. In 2013, Marcus started co-leading the Men’s MS Connection Group where he enjoys providing group support and is able to learn from group members.
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nationalmssociety.org | 1-800-344-4867
HEALTH & WELLNESS CLASSES yoga
Aquatics
Costa Mesa Yoga Works 1835 Newport Blvd, #A208 Mondays, 1:00 - 2:00pm
Carlsbad: Indoor Waterworks Aquatics 2704 Gateway Road Tues & Thurs 11:45am - 12:45pm
Dana Point Dana Point Community Center 34052 Del Obispo Road Wednesdays, 8:00 - 9:15am Fullerton Friends in Christ Lutheran Church 2311 E. Chapman Avenue Wednesdays, 10:30 - 11:30am Huntington Beach Yoga Works 301 Main Street Wednesdays, 1:00 - 2:00pm Santa Ana Goodwill Fitness Center 1601 E. St. Andrew Place Fridays, 9:30-10:30am San Diego Addie’s Personal Training Studio 4440 Ingraham St. Sundays, 10-11am $5 per session
Balance & strength Training
La Jolla Ability Rehab Specialists 737 Pearl St, #108 1st, 2nd, 3rd Tuesdays, 6 - 6:45pm Costa Mesa Healthy Balance 1599 Superior Avenue, Suite B Thursdays, 10:30 - 11:30am
Chula Vista: Outdoor Loma Verde Pool 1420 Loma Lane Thursdays, 12 - 1pm 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 10:30 - 11:15am
A current class participant says, “This class is, by far, the best and most fun exercise class that I have ever taken! Chair Zumba encompasses aerobic exercise, weights and complete upper body movements, all choreographed to great music and it’s all done in a chair. Don’t miss
trying this fabulous class!”
To attend any of the listed classes, a waiver is required. Please contact 800-344-4867 to request a waiver today.
in your neighborhood Carlsbad: Peace, Love, and Yoga 2588 El Camino Real, Suite O Fri. 11:30am-12:30pm 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 - 10am $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 - 10am $6 per session NEW!! Santa Ana: Chair Zumba Goodwill Fitness Center Tues. & Thur. 11am - 12pm $10 per session. Call 714-361-6180 for more information.
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Golf “FORE” MS
MS connection: SPRING 2015
21ST ANNUAL
“I am proud to be serving as the Honorary Chair for the 21st Annual MS Golf Invitational sponsored by Torrey Pines Bank at La Jolla Country Club on Monday, May 4, 2015 benefiting the National MS Society. Supporting the Society is something I care deeply about as I have personally seen how devastating this disease can be for individuals and families. I hope you will join me on the course to support the vision of creating a world free of MS.” - Doug Barnhart, Chairman of BarnhartReese Construction, Inc.
The MS Golf Invitational event features: • Golf at an elite, private Southern California course • Premier Tee Prizes • Contests & Player Awards • Lunch on Carts • Hosted Post-Golf Reception • Gourmet Dinner • Silent & Live Auction
Last year, over 110 golfers raised more than $140,000 toward a world free of MS. The playing field is strictly limited, so be sure to reserve your foursome today ($3,000 per foursome/ $750 per individual entry)! For more information regarding the tournament, sponsorship, live auction donations, and volunteer opportunities, please visit golfMS.org or contact Krystal Thompson at 760-448-8434.
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nationalmssociety.org | 1-800-344-4867
CHALLENGE WALK MS
MEET erin, 13-year extraordinairre Adrenalin is pumping, emotions are running high, and a sense of empowerment courses through your veins as you embrace the breathtaking Pacific Ocean views surrounding you. Comfy beds, massaging hands, and tasty food await you at the end of each exhilarating day. Friendships made with fellow walkers are rekindled year after year, creating lifelong bonds. This can all be experienced at the 3-Day, 50-Mile Challenge Walk MS in Southern California. This marks my 13th year walking 50 Miles with the National MS Society. I was diagnosed with relapsing-remitting multiple sclerosis in June 2002, a year after my first child was born. Just three months after my diagnosis, two friends and I hit the pavement for our first Challenge Walk. Team, “Aye, Aye Captain,” was born and we haven’t looked back since. We’ve had returning members with and without MS, children whose parents have MS, and friends wanting to support loved ones with MS, all focused on finding a cure for this often-devastating disease. I participate in this walk because I AM ABLE. I want to inspire my daughters, Elin, 13 and Emily, 11 to be determined, to work hard, and to make a difference. I’m so proud of them for not only completing the Challenge with me but also educating themselves and their peers about MS while raising funds to find a cure. Seeing the younger generation get involved bolsters my hope that a cure really is around the corner. If walking 50 miles in three days seems daunting right now but you want to be involved, consider volunteering at a rest stop. Walkers need cheerful people to help refuel and inspire them to keep on trekking.
Erin on top-right in orange shirt
Whether as a walker or a volunteer, please join us September 25-27. I guarantee you won’t regret it! - Erin Lohner Ways to be involved in Challenge Walk MS: • • • • • •
Walk (must be at least 10 years old) Form a team Become a Crew Member Become a Super Crew Member Become a Volunteer Join our Extra Mile Challenge Planning Committee
Join challenge Walk MS today! Visit myMSchallenge.com or call (800) 486-6762.
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MS connection: SPRING 2015
SUPPORTING THE MISSION
2014 VOLUNTEERS OF THE YEAR!
During our Annual Meeting of Members breakfast in January, we honored extraordinary volunteers who go the extra mile. We couldn’t do it without the incredible support of these individuals and community partners. Spirit of Giving MS Activist of the Chapter Star Volunteers Connection Group Award Year of the Year Leaders of the Year John Butcher Angie Matthias Kathy Currie, Ted Kathy Kelby & Currie & Liz Tieman Rob Lammers MS Dinner Auction Strategic Volunteer of the Year Philanthropy Bike MS Corporate Foundation Corporate Partner Phyllis Groves Partner of the Year of the Year of the Year Ace Relocation Systems, Grossmont Office Volunteer of Pacific Wealth Inc. Healthcare District the Year Management Bike MS Cycling Golf MS Invitational Jack Owens Student Partner of the Year Volunteer of the Year Organizational Organization of the Stage 21 Cycling Ernie Martinez Alliance Award Year John Rodee Bike MS Volunteers of Healthcare Partner Student Nutrition the Year of the Year Organization, Organizational Kristi & Keith Dr. Liz Spier, San Diego State Impact Award Sherwood Kaiser Permanente University Betty’s Builders & Bubbles & Brunch Legislator of the Year Clark Construction Student Volunteer of Volunteer of the Year Susan Davis the Year Outstanding Cindy Locke Isabelle Norconk Partnership Award Lifetime Challenge Walk MS Commitment Award Torrey Pines Bank Walk MS Sponsor Volunteer of the Year Jeanne & Bob of the Year Passion for the Lynn Nelson Woodard Langer Juice Mission Award Marianne Dilworth Company City Partner Media Partner of the Year of the Year Walk MS Volunteers Researcher of the City of Dana Point Dee Dean, East of the Year Year County Herald Dr. Barbara Ranscht Katie Dahl & Lory Community Excellence Sheldon Award Receptos
nationalmssociety.org | 1-800-344-4867
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SUPPORTING THE MISSION
MISSION POSSIBLE
The Mission Possible Club is committed to the cause, care, and cure for MS. They have given or raised $10,000 or more in 2014 to impact the lives of people living with MS. We would like to thank the following members: Henry Austin Mahr Trust - $85,709 Dick & Lynn Gordon - $73,400 John & Jodi Most - $66,542 Sam & Betty Brusco - $62,680 Judy Zankle Fund - $60,000 Al & Casey Basso - $52,102.86 McGrory Family Fund - $50,350 Diana Twadell - $44,895 Douglas Peterson - $42,225.45 Bill & Kristi Bisch - $41,420 Paul & Amy Dechary - $37,339 Anne Allen - $33,775 Keith Padien - $32,075 Chris & Joyce Serocke - $30,034 Roger & Barbara Maurais - $25,400 Anonymous - $25,000 Doug Barnhart - $25,000 Dawn Beattie - $24,873 Troy, Heidi & Maclaine Parish - $24,261 Rona Kay - $24,250 Ken Tudhope - $20,920.01 Paul & Mary Smigliani - $20,920 Cindy Roper - $20,009 Sunwest Bank - $20,000 Matthew & Tiffany Birkett - $19,799 Mark Fischer - $19,185 Dan & Saroya Williamson - $18,440 Phil & Arlene Bresnick - $18,253 Brian Grey - $17,830 Tom & Cynthia Perazzo - $17,276 Justin Reckers - $17,015 Jay & Tina McCabe - $16,421 Jack & Terry Babbitt - $15,985.50 Pam Fair & Glen Sullivan - $15,795 Glenn Arnold - $15,257 Alan Grossberg - $15,177 Don & Ellen Goodwin - $15,100 Grossmont Healthcare District - $15,000 Alan Peterson - $15,000
Michael Newton - $15,000 Jeff & Sheila Parker - $14,330 John McDonough - $14,311 Kirk Evans - $13,900 Suzanne Shepela - $13,870 Laurie Weber - $13,670 Robert Moore - $13,475 Arthur Rosten - $13,25 Doug & Denise Regnier - $13,171 Bob & Jeanne Woodard - $13,085 Nancy Howden - $13,000 Mark Malbon - $12,840 Javier & Doris Morgan - $12,825 Jim Ponder - $12,625 Jeff Walsworth - $12,000 Mark Neilson - $11,295 Escondido Sunrise Rotary Club - $11,200 Tim Bockhold - $11,180 Christopher Steiger - $10,935 Bob Ott - $10,800 William Arzt - $10,735 Jim & Ellen Beshears - $10,697 Tim & Leah Salmon - $10,675 Tracie Garacochea - $10,645.50 Alice Diaz & Vincent Harden - $10,600 Steve Malloy - $10,464 Dan Fischer - $10,420 Richard & Michelle Israel and Sabine Menzhausen - $10,395 Dr. Jody Corey-Bloom - $10,250 Matthew Fein - $10,165 The Josephine Herbert Gleis Foundation - $10,000 Sempra Energy Foundation - $10,000 Jeffrey Walsworth Family Trust - $10,000 Change a Life Foundation - $10,000 Marvin & Marcia Tilker - $10,000 Kimberly Roush - $10,000 Lynn & Diane Nelson - $10,000 Don & Linda Bailey - $10,000
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THIRTY-tHREE YEARS OF BIKE MS
On a picturesque sunny Southern California day, the Bike MS Bay to Bay Tour celebrated its 32nd year this past October, with 2,036 cyclists of all levels raising $2.35 million! We are especially proud of and would like to recognize our corporate partners and top teams, as well as highlight the 2015 Bike MS 150 Club with their incredible achievement of breaking the $1 million mark and creating the inaugural 150 Club Million Dollar Challenge.
Top Teams
Mission Possible Award Level ($100,000+) Howard’s Team - $160,659.21 Team Wescom - $140,138.94 Team Basso - $129,485.86 Team Disney - $124,110.76
MS connection: SPRING 2015 KTLA 5 & Fox 5 San Diego - $31,589.00 Deloitte - $30,726.92 Team Crash - $30,236.00 Good Carma - $28,885.00 Team Tiki Ha Ha- $26,507.92 teaMSeaside - $25,277.50 Silver Award Level ($15,000-$24,999) Team SHOEBACCA - $24,027.00 Pratt & Whitney Power Spinners - $23,955.00 JANUS et Cie Velo - $22,823.00 Scripps Riders for a Cure - $22,380.00 Annie’s Gang - $21,766.00 Terry’s Team - $20,925.55 OutSpokin’ For A Cure - $19,459.00 Roland Stones - $18,427.00 McCarthy Hammerheads - $17,430.00 SchoolsFirst - $16,937.00 Rehab United - $16,285.10 Wells Fargo - $15,742.00 Cymer - $15,385.00 Hogan’s Heroes - $15,033.00
PRESENTING SPONSORS
Diamond Award Level ($50,000 - $99,999) Still Kicking For Gordo - $78,525.00 KPMG ALL STARS - $75,135.41 MOST: Team Top of the Hill - $63,789.61 Team Hansen’s - $62,608.65 Team Intuit - $52,817.77
PLATINUM SPONSOR
Gold Award Level ($25,000-$49,999) LPL Financial - $47,085.34 HD Supply - $39,187.81 Power Peddlers - $38,522.00 Mitsubishi Motors - $38,434.00 Bill’s Biker Backers - $33,071.00 Team Beckman Coulter - $32,062.19
DIAMOND SPONSORS
17
nationalmssociety.org | 1-800-344-4867
bike SM
CHALLENGE
CHARTER
CHAMPIONS CIRCLE 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 24
Al Basso John Most Douglas Peterson Paul Dechary Rona Kay Ken Tudhope Jack Babbitt Glenn Arnold Kirk Evans Arthur Rosten Jim Ponder Jay McCabe Mark Malbon Mark Neilson Jeff Parker Tim Bockhold Christopher Steiger William Arzt Bob Ott Tim Salmon Steve Malloy Bob Moore Dan Fischer Matthew Fein Kimberly Roush
$51,302 $40,044 $35,713 $33,000 $24,250 $20,100 $15,450 $15,257 $13,900 $13,253 $12,625 $12,221 $12,000 $11,295 $11,275 $11,080 $10,870 $10,735 $10,700 $10,605 $10,464 $10,455 $10,220 $10,000 $10,000
Bryon Barnes Bill Sanderson Richard Buice Robert Pettman David Brooks Danna Kipnis Mike Wolff Hugh Neuharth Debbi Kemp Martin Taylor Peter Goemans Skypp Cabanas Michael Verachtert Kerry Fisher Mary Anna Parker Michele Morrison Andrew Stout Roger Waterman Staci Beech Timothy Griffin Mark Whittemore Tracie Garacochea Michael Flynn Roland Hoffman Tim Dolan Lucia Saitta Daniel Means Phil Ohme Jason Smulski Jim Caraccio Keith Sherwood Darren Williams David Slaton Peter Droog Thomas Lilly Caren Landrum Jay Carr Joel Greiner Scott Garber Allison Saloy Tony Montenegro Alex Hamlow Mark Mahoney
$9,265 $8,005 $7,950 $7,443 $7,296 $6,777 $6,415 $6,365 $6,195 $6,075 $5,920 $5,892 $5,810 $5,800 $5,780 $5,775 $5,685 $5,670 $5,640 $5,545 $5,500 $5,382 $5,375 $5,343 $5,300 $5,201 $5,160 $5,140 $5,135 $5,051 $5,050 $5,050 $5,030 $5,012 $5,005 $5,004 $5,000 $4,845 $4,816 $4,785 $4,775 $4,730 $4,610
67 68 69 70 71 72 73 74 75 75 75 76 77 78 79 80 81 82 83 84 85 86 87 88 89 90 91 92 93 94 95 96 97 98 99 100
CLUB
This commemorates the historic achievement of the 2015 Bike MS 150 Club
MEMBERS
25 26 27 28 29 30 31 32 33 34 35 36 37 38 39 40 41 42 43 44 45 46 47 48 49 50 51 52 53 54 55 55 56 57 58 59 60 61 62 63 64 65 66
150
MILLION DOLLAR
members in breaking the $1 Million level in fundraising. This singular group of riders raised nearly one-half of all funds in 2014 among over 2,000 riders through their extraordinary commitment and contributions.
Kevin Gaffney David Wright Daniel Abrams Ken McKinley Bruce Strauss Annamaria Ferree Jaimie Spears Jeff Smith Randy Cowan Charles Nugent Christopher Torres John Boyer Robert Fleming Doan Hohmeyer Colleen Brown Franklyn Gottbetter Scott Scheer Terri Gaydon Daniel Moore Charles Smith Mark Patterson Kristin Zandbergen Jeff Walsworth Sean Callan Lyle Sandlin Jamie Sutherland Mark Firger Erin Mira Erin Steele Jaime Gruttadauria Rick Herschberg Jim Horstman Mitch Rickard Don Kolehmainen Kevin Healy Ryan Parker
$4,580 $4,545 $4,520 $4,515 $4,467 $4,435 $4,430 $4,410 $4,360 $4,360 $4,360 $4,340 $4,285 $4,265 $4,252 $4,219 $4,180 $4,140 $4,100 $4,085 $4,075 $4,030 $4,000 $3,985 $3,965 $3,900 $3,893 $3,892 $3,888 $3,870 $3,828 $3,815 $3,800 $3,760 $3,741 $3,690
101 102 103 104 105 106 107 108 109 109 109 110 111 112 113 114 115 116 117 117 118 119 120 121 122 122 123 124 125 126
Terrence Krieger Craig Rubenstein John Pierce Andrew Markham Bob Marmor Hee-Won Lim Katherine Wilson Thomas Bloomer Josh Berg Aaron Gordon Karen Klein Anne Coleman Ray Freiwirth Nicole Sweeney Heather McDowell William Fischbeck Bill Goltermann Jerry Giovaniello Bill Hirsch Ron Schneirson Marty Kessell Wayne Carvalho Peter Albini Dok Choe Jim Fort Mitch Gerber Chris Bergstrom Hemanth Brindavan Mary Storm Jay Labourene
$3,688 $3,656 $3,650 $3,635 $3,625 $3,585 $3,560 $3,520 $3,500 $3,500 $3,500 $3,490 $3,480 $3,465 $3,450 $3,445 $3,424 $3,415 $3,409 $3,409 $3,405 $3,380 $3,370 $3,360 $3,350 $3,350 $3,345 $3,337 $3,330 $3,326
127 128 129 130 131 132 133 133 134 135 136 137 138 138 139 140 141 142 143 144 145 146 147 148 148 149 150
Robert Torres Michael Woltz Bill Nolte Ian Fetterman Robert Belyea Elizabeth Giovaniello Tom McDowell Ron Wilsie William Orland Kevin Du Mont Christopher Paskach Donna Benson Adam Sokolic Stephanie Winkler Tim Zandbergen Eric Spillman Andrew Bisch Sean McDyer Andrew Bray Joe Monier Mike Malinick Andrew Garcia Karen Fort Darren Rivera Mckenzie Steiner Michael Jenkins Sheila Parker
$1,011,325
OCTOBER 18 & 19, 2014
Ways to be involved in Bike MS: • • • • •
Ride (must be at least 12 years old) Form a team (must be 4 or more team members) Become a Volunteer Captain Become a Volunteer Join our Bike MS Planning Committee
Are you a Walk MS Team Captain or a Walk MS team member? Many Bike MS teams attended and volunteered at our Walk MS events to show support. Let’s show our riders that Walk MS supports Bike MS by volunteering for the event (pre-event, day-of and post-event options available).
$3,322 $3,320 $3,290 $3,280 $3,272 $3,260 $3,250 $3,250 $3,245 $3,230 $3,226 $3,217 $3,205 $3,205 $3,200 $3,193 $3,170 $3,150 $3,135 $3,108 $3,100 $3,090 $3,085 $3,070 $3,070 $3,065 $3,055
Join Bike MS today! 25 miles over one day or 100, 125, or 150 miles over two days Visit biketofinishMS.com or call (800) 486-6762 to register as a rider or volunteer, or to make a donation!
18
MS connection: SPRING 2015
RESEARCH
Designing solutions Dr. Christopher Luzzio doesn’t just use assistive technology to help people with multiple sclerosis – he designs and builds it, too.
Creating a bridge Dr. Luzzio works as an MS clinician at University of Wisconsin (UW) Hospital and Clinics in Madison, but he also teaches at the University of Wisconsin College of Engineering. This is because of his background in bioengineering—specifically, mechanical engineering. “I’ve always been a tinkerer,” he says, “taking apart machines and fixing them or figuring out how they work and building new ones.” Dr. Luzzio adds, “Bioengineering is applying engineering practice to solve problems in medicine or biology.” An example of this type of work would be the development of an artificial limb. At the UW College of Engineering, he mentors and teaches students how to design and fabricate assistive devices. He also meets weekly with senior design students in a class led by associate professor, Dr. Heidi-Lynn Ploeg.
Dr. Christopher Luzzio in the workroom “Necessity is the mother of invention,” Dr. Luzzio said. “When I see a need for a device to help one of my patients with MS, I present the challenge to our engineering design students.” The students then design a device, build a prototype and test it. The students get real-world experience, working directly with people living with MS to develop potential solutions for the challenges they are facing. “I find it rewarding to help educate young engineers,” Dr. Luzzio says. “My presence has helped bridge their engineering education, medicine and community service.”
nationalmssociety.org | 1-800-344-4867
19 Other projects that Dr. Luzzio and his students have worked on include creating supports for weakened arms, various exercise machines and a wheelchair designed to help a person with severe leg weakness get back into the chair more easily after a fall. This semester, students will work on a retractable mini-drawbridge to go over a sliding door entryway, which will allow easier wheelchair access. One of Dr. Luzzio’s favorite projects was designing and building a prosthetic arm control system to help with fine motor skills. “What’s exciting is seeing a need, creating a solution for that need, and then making it into reality,” Dr. Luzzio says. “Unlike basic science investigations for MS that may require years to reach results, these activities lead quickly to an obtainable useful product that will help a person.”
Dr. Luzzio uses a sensor attached to his finger to turn the pages of an e-reader.
Useful solutions Drs. Luzzio and Ploeg are members of UW-CREATe (Center for Rehabilitation Engineering and Assistive Technology), an organization that finds independence and mobility solutions for people with disabilities. Dr. Luzzio’s latest project helped a woman with MS use an e-reader more efficiently by mounting it on a stand that includes a sensor connected to her finger. When she moves her finger, metal arms contact the screen and advance the page, which had been difficult for her to do without assistance.
Drs. Luzzio (right) and Ploeg (left) and their students with a retractable drawbridge for accessibility obstacles.
20
MS connection: SPRING 2015
ADVOCACY
I ADVOCATE FOR CHANGE BECAUSE... My life was all about the sciences. I studied chemistry as an undergraduate at UCLA and attended UC Berkeley for graduate school. While at Berkeley, everything changed. I was studying the effects of MS on the visual system when I went blind in my left eye. I got the phone call from the neurologist confirming what I already knew…I had MS. I went home and studied for my vision test, blind in one eye and wiping away tears. Following two more episodes of optic neuritis in my left eye, my vision came back! I stopped having symptoms for a while, so I went into denial and kept MS a secret from my family, friends, and colleagues. By 2011, the MS had progressed to the point where I could no longer drive. I went from a very social existence, to one of isolation. During that time, I found the ancient writings by Rumi, 13th century poet and philosopher. I began to understand the purpose of suffering. I found a new way of understanding life and started to look at the world with a different set of eyes. Rumi’s writings helped me so much that it inspired me to write my book Rumi’s Fables, which also serves as my fundraiser for the Society. I became more active in the community, sharing and using my story to make an impact. MS was no longer my secret and I am now proud to call myself an MS Activist. Recently, I visited congresswoman Loretta Sanchez to discuss insurance coverage of assistive devices, durable medical equipment and the need for funding
Negar Niazi with Congresswoman Sanchez
more research. I urge you to share your story and help raise awareness about MS. The cure is in the pipeline and the more active and vocal the volunteers, the faster a cure will come. - Negar Niazi
TAKE ACTION TODAY If you are interested in becoming an MS Activist or would like to share your personal story, contact Aarushi Malhotra at aarushi.malhotra@nmss.org or call (714) 689-9613. Follow us on Twitter @CA_MSactivists
21
nationalmssociety.org | 1-800-344-4867
chapter news
Dissoulution notice As part of the Society’s efforts to become a more unified organization, the National Charting Our Future Task Force recommended that the Society begin the process of becoming a single entity, and that the separately incorporated chapters dissolve their corporate status. In the Annual Meeting held on January 31, 2015 a vote was held and approved on the dissolution of the separately incorporated entity for the Pacific South Coast Chapter. Commencement of the proceeding for voluntary winding up will begin immediately now that member and board approval has been obtained. This change will not impact how we serve the needs of individuals affected by MS within our chapter territory. The chapter itself will continue to exist and operate in exactly the same way. The dissolution simply addresses the corporate status of the chapter.
The following language is contained in the Board of Trustees’ Resolution dated November 21, 2014: BE IT RESOLVED, that the Board approves dissolution of the separately incorporated entity called the National Multiple Sclerosis Society, Pacific South Coast Chapter. The Board approves recommending to members the dissolution and after required notice, if a majority of members present vote in favor of dissolution, the Board will act in a timely fashion to formally dissolve the Pacific South Coast Chapter by ensuring the required documentation is filed with state authorities and by transferring separately held assets, to the extent there are any, to the National Multiple Sclerosis Society. The Pacific South Coast Chapter will continue to serve individuals affected by multiple sclerosis as a chapter of the National Multiple Sclerosis Society.
Save the Date!
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urday, November 21, 2015 W E S C O OR O L NAD BA O Y RE SORT MSdinnerauction.com
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August 29, 2015 11am Balboa Bay Club Newport Beach www.BubblesandBrunch.org
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Questions about an oral treatment option? Join a live interactive webcast that lets you talk with a medical expert and a person living with MS from the comfort of your home.
Join us online every:
Tuesday at 7:00 pm ET (4:00 pm PT) and Thursday at 10:00 pm ET (7:00 pm PT) Reserve your spot: MS-Web-Events.com
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mark your
calendars May
April 10: 11: 19: 24: 25: 29:
Water Walk MS: Orange County Walk MS: Irvine sponsored by Fish & Tsang LLP Walk MS: Carlsbad sponsored by San Diego County Credit Union Water Walk MS: San Diego Walk MS: San Diego sponsored by San Diego County Credit Union Boys’ Night Out
4: 9: 16: 27:
MS Golf Invitational sponsored by Torrey Pines Bank Moving Forward: Program for the Newly Diagnosed Day at the Bay - Mission Bay World MS Day
June 6:
Day at the Bay - Dana Point