WINTER 2014 PACIFIC SOUTH COAST CHAPTER
MS CONNECTION NEWSLETTER GET INVOLVED IN ANY NUMBER OF WAYS!
INSIDE 03 THIS ISSUE
MATCHING GIFTS CAN DOUBLE YOUR DONATION
07
12
19
MARK YOUR CALENDARS FOR UPCOMING EVENTS
TALKING ABOUT STEM CELLS: PART 1
CHALLENGE WALK MS: A COMMUNITY OF SPIRIT & STRENGTH
2
MS CONNECTION: WINTER 2014
dine out. 3.5.15
FOODIES AGAINST MS
SAVE THE DATE TO EAT OUT FOR MS! On Thursday, March 5, wear orange and choose a restaurant of your craving from our list at http://tinyurl.com/MSfoodies. Bring the restaurant’s flier to dine out and support a world free of MS!
CONNECT WITH US ONLINE: MSpacific.org Like us: facebook.com/MSpacific Watch us: youtube.com/MSpacific On the Cover: You can get involved in so many ways at the chapter! Keep reading this quarter’s edition to learn more about how you can use your talents and passions to help further our mission.
LETTER FROM THE BOARD CHAIR
MAKING EVERY CONNECTION COUNT Dear friends, A new year is nearly upon us and with it comes unlimited opportunities to make more people aware of our mission. As we head into the season of thanks and holiday cheer, let us continue to grow the support and awareness that makes our voice and our work stronger. On behalf of the board and staff, I want to thank everyone -- our donors, event participants, sponsors, volunteers, and advocates -- who played a part in making 2014 such a success. We look forward to continuing to provide the many diverse activities that keep our extraordinary momentum going. That momentum is not randomly achieved; it is fostered by engagement that stems from making every connection count. We have an abundance of generous people in our community who want to make a difference. Now is the time to let them know how every gift and every connection is taking us closer to stopping MS, reversing MS’s effects, and ending MS forever. In this issue, you will read about all the different ways you can get involved at the chapter. Whether you want to give of your time as a volunteer leader (page 20), fundraise as a Walk MS participant (page 11), or engage with our national teleconference series (page 7), there is something for every interest. No matter how you choose to get involved, remember there are moments in each and every day to connect and share our story. Now is the time to get involved and make every connection count. As our connections multiply, so does our ability to make progress, moving all of us even closer to living in a world free of MS. Sincerely, Cynthia Perazzo Board Chair
3
NATIONALMSSOCIETY.ORG | 1-800-344-4867
FUNDING THE MISSION
MORE WAYS TO GIVE! HERE’S HOW YOU CAN DOUBLE YOUR DONATION.
There are numerous other ways you can support our mission to help make an even bigger difference for people living with MS in our community. Many companies offer matching gift programs to encourage employees to contribute to charitable organizations. Some provide matching funds to support employee volunteer hours. Most of these programs match contributions dollar for dollar, and some will even double or triple the amount of your gift! How exciting to know gifts you have made or will make can be matched through your company’s matching gift program. Get started today by simply contacting your human resources representative at your company to find out if your company offers
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: Jessica Ishikawa Volunteer Associate Editor: Leslie Roach © 2014 National Multiple Sclerosis Society, Pacific South Coast Chapter
a matching gift program. The process is easy! Once you provide our staff with your matching gift paperwork, we will send confirmation to your employer. Another way to double a donation, if you are fundraising, is to ask your donors to visit nationalMSsociety.org/ EmployerMatch or contact their company’s HR department to learn about their matching gifts policies and procedures. Make a gift today and make an even greater impact towards bringing us closer to a world free of MS. Contact Merri Hulet at (760) 448-8419 or merri.hulet@nmss.org for more information on matching gift programs.
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.
4
MS CONNECTION: WINTER 2014
AGENTS OF CHANGE ACCEPT THEIR MISSION TO END MS FOREVER Nearly 700 people accepted the mission and served as “Agents of Change� at the 28th Annual MS Dinner Auction sponsored by Pacific Wealth Management on November 22 at the Loews Coronado Bay Resort. Over $500,000 was raised to support our mission! This ritzy affair included a delicious four-course dinner, posh entertainment, stylish dancing and swank 007attire. Over 700 auction packages were featured including luxury cruises, trips to London and Paris, domestic vacations to Hawaii and Florida, unique experiences, entertainment packages, a beautiful collection of jewelry by Leo Hamel Fine Jewelers, lavish wine experiences, memorabilia and so much more. An inspiring video was shown during the evening featuring long-time member and supporter, Bill Bisch (pictured below with wife, Kristi), and his life with multiple sclerosis. The video, which
From left: Tom Perazzo, Cynthia Perazzo, Heidi Parish, and Troy Parish
can be viewed at http://goo.gl/W51t9R, also highlighted the remarkable MS research occurring at UC Irvine, and one of the UCI researchers, Dr. Craig Walsh, was also present at the event. The audience was moved by this presentation as they honored Bill and the researchers with a standing ovation followed by pledges to continue to support those affected by the disease and the research to find a cure. Thank you to all those that attended and supported this incredible evening. You were wonderful Agents of Change. Are you interested in getting involved with this event in 2015? Consider joining the Auction committee, sponsoring the event, or purchasing a table. For more information, contact Heather at heather.dean@nmss.org. Visit MSdinnerauction.com to see more pictures from the event.
PHOTO CREDIT: LUCI DUMAS FINE PHOTOGRAPHY
FUNDING THE MISSION
5
NATIONALMSSOCIETY.ORG | 1-800-344-4867
MONEY MATTERS
MANAGING YOUR MONEY WITH MS Gloria Dady had envisioned spending the rest of her working life taking care of people. She never expected that, in her 50s, multiple sclerosis would force her to start drawing on her retirement nest egg. It was unsettling — until she reached out for help from the National MS Society. Through the Society’s partnership with the Society of Financial Service Professionals, people affected by MS can get free financial counseling from trained professionals through the Financial Education Partners (FEP) program. Doug Head, CLU, ChFC, a financial advisor with Edward Jones in Tukwila, Wash., is one such volunteer. Head helps people plan for a life with MS by talking about basic budgeting, different ways to save, how to maximize health insurance benefits and more. But he lends more than his number-crunching know-how. He and other FEP volunteers also offer hope that any financial challenge can be tackled with patience and planning. “Dealing with the challenges of MS often leaves people feeling that their finances have gotten away from them,” Head says. “The first thing I ask is, ‘What are your two or three major financial concerns?’ This helps us focus on what’s really important to them.”
Gloria Dady with her grandchildren
Dady appreciated talking to a finance professional who could explain everything clearly and compassionately. Head discussed strategies to lower her tax payments and keep her retirement savings intact, even as she drew on it for income. Over the past four years, Head has offered free financial advice to more than 100 people who have been referred to him by the Society. “The people I’ve met are wonderful,” Head says. “I’ve been inspired by their journeys.”
Financial planning for a life with MS can be difficult. We provide financial counseling through the National Financial Education Partners Program to registered members of our chapter. This program is designed to help you prepare and plan for the financial impact of MS related issues. If you are interested in connecting with a local financial advisor, call 1-800-344-4867 and press “1”.
6
MS CONNECTION: WINTER 2014
ADVOCACY
THE MANY FORMS OF SUPPORT BY RALPH MONTEFUSCO
When my wife Michele was diagnosed with multiple sclerosis in October 2006, we faced a steep learning curve about the disease. Once we realized that the diagnosis wasn’t a death sentence, we established a structure around treating her MS and accommodating her symptoms. Michele and I have been married for 30 years. Not being a medical person or an especially warm and fuzzy type, I tried to find a way to provide support. I settled on using my experience as an activist to advocate on behalf of people with MS right here in Vermont as the co-chair of Burlington’s Committee on Accessibility and the chair of the Society’s government relations committee. I changed my life in other ways, as well. For the past 10 years, I worked as a consultant for a series of projects. Since I am a few years older than Michelle, our long-term plan was for me to retire first, while she continued working for several more years. However, it became apparent that support, just like MS, takes many forms. As time passed, I handled more tasks of our day-to-day life, and we decided that I would retire earlier than we had planned in order to take over our household and financial responsibilities.
Ralph Montefusco and Michele Patenaude
While this admittedly resulted in a hit to our income, it also freed both of us. I am no longer on the road a lot, working late and spending large chunks of time on the phone and computer. Although I have a lot to do right here at home, it doesn’t have to be squeezed in around any clients’ needs. Meanwhile, Michele doesn’t have to struggle to find the energy and time to devote to the daily, essential tasks of our life. We would both prefer that MS wasn’t with us, but at least for now our quality of life has improved. The future will certainly hold more changes, but our partnership will remain the most significant means for us to adjust to whatever happens. Ralph Montefusco and Michele Patenaude live in Burlington, VT. Provided by the Greater New England Chapter.
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).
MARK YOUR CALENDAR
LOCAL EVENTS FUELING IMPACT: ANNUAL MEETING OF MEMBERS Saturday, January 31 Laguna Cliffs Marriott 25135 Park Lantern Dana Point, CA 92629 See page 16 for more information.
MOVING FORWARD: PROGRAM FOR THE NEWLY DIAGNOSED Saturday, February 7 8:30am–12:00pm Hilton San Diego Mission Valley If you have been diagnosed with MS in the last three years, this is a program designed for you. Learn about treatment options, the emotional and physical aspects of MS from community experts in the respective fields. This is also a great opportunity to meet others living with a new diagnosis.
SAVE THE DATE! THE 15TH ANNUAL MS SYMPOSIUM Saturday, March 21 Hilton-San Diego Mission Valley 901 Camino Del Rio South San Diego, CA 92108 Dr. Jody Corey-Bloom and other leading experts in the area of MS will share the latest information about symptom management, MS treatment and more. Invitations will be mailed in February.
7
CONNECT TO THE INFORMATION YOU NEED: TELELEARNING SERIES The Telelearning series provides information and guidance on current matters essential to living one’s best life with MS. The program will offer different topics throughout the year. Each free telelearning will feature topic-area expert(s) by phone with online presentations and Q&A session. Presenters are subject to change. • MS Research - Your Questions Answered Tuesday, January 20, 2015 4-5pm Thursday, January 22, 2015 7-8pm • MS and Employment (Part 1 of a 4-part series) - Legal Basics: Know Your Rights Thursday, February 12, 2015 5-6pm • MS and Employment (Part 2 of a 4-part series) - Cognitive Symptoms and Fatigue in the Workplace Thursday, February 26, 2015 5-6pm • MS and Employment (Part 3 of a 4-part series) - Supports to Help You Find Employment Thursday, March 12, 2015 5-6pm PT • MS and Employment (Part 4 of a 4-part series) - The Essential Guide to Flexible and Home-Based Jobs Thursday, March 26, 2015 5-6pm • Managing MS Bladder and Bowel Symptoms Tuesday, March 17, 2015 4 -5pm PT Thursday, March 19, 2015 7-8pm PT
8
MS CONNECTION: WINTER 2014
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 3rd Wednesday, 1:30 - 3:30pm 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: Working with MS 1st Tuesday, 6:00 - 8:00pm Laurie Cable 714-969-8298 lderble@aol.com Karen Patterson 714-377-4006 Irvine: Walkers & Rollers 2nd Wednesday, 10am - 12pm Bonnie Richmond 949-677-4272 sambon@pacbell.net 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 Karen Harlas 949-498-9583 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 Mike Milne 949-215-8502 mcmilne@cox.net 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
9
NATIONALMSSOCIETY.ORG | 1-800-344-4867
SAN DIEGO
Chula Vista St. Marks Lutheran Church 850 Hilltop Dr. 3rd Wednesday, 11am - 1pm Adriana Flores 619-656-8098 font.ra@gmail.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 Escondido Joslyn Senior Center, Room 5 210 Park Avenue 3rd Wednesday, 1 - 3pm Michele Easterling 760-805-6390 m.easterling68@gmail.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: I Can’t Remember Group National MS Society 12121 Scripps Summit Drive 1st & 3rd Wednesday, 11am 12:30pm Carol Rohan 858-755-2440 csrohan@crohan.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 San Diego: Men’s Group Kaiser Education Center San Diego 10990 San Diego Mission Road 1st Tuesday, 6:00pm Mike Kolender 858-274-7114 Marcus Brown 619-248-2667 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: PRISCILLA WOLZ
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 Support Group for People Experiencing Progressing MS Symptoms 2nd Tuesday of Every Month 10:00am - 12:00pm Facilitator: Debbie Hornstein, MSW Neighborhood Community Center 1845 Park Avenue Costa Mesa, CA 92627 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
Priscilla Wolz lives with MS. She has been a co-leader of a group in Huntington Beach for over 20 years. Priscilla started the group with the objective of helping others and finding support from others. She uses the group as a platform to provide new information to people living with MS, and aid them in feeling empowered and more self-confident in coping with challenges. Additionally, Priscilla’s compassion and emotional support is a huge benefit to the members. Her group brings people together who share common life experiences for support, education and mutual aid.
10
MS CONNECTION: WINTER 2014
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
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 Thurs. 1:30-2:30pm Fee based Class. For more info please call 760-720-0619 or email ms@juliachenyoga.com Fullerton: Indoor Aquatics North Orange County YMCA 2000 Youth Way Mon, Wed & Fri, 9 - 10am $6 per session 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
11
NATIONALMSSOCIETY.ORG | 1-800-344-4867
FUNDING THE MISSION
WALK MS 2015 REGISTRATION IS OPEN!
SPONSORED BY
SUNDAY, APRIL 19, 2015
LEGOLAND® California Resort, Carlsbad
SATURDAY, APRIL 25, 2015
NTC Park at Liberty Station, San Diego
SATURDAY, APRIL 11, 2015 University of California, Irvine
Join us in welcoming new title sponsor Fish & Tsang LLP (F&T) to Walk MS Irvine. Fish & Tsang is a premier intellectual property law firm and the firm’s involvement marks the first year an Orange County-based organization has held a title sponsorship. We are thrilled to have them on board and look forward to seeing team F&T at the 2015 Walk!. Visit MSwalkOC.com to register, volunteer or donate.
Not only is San Diego County Credit Union our Title sponsor for the San Diego & Carlsbad events they are also our Coolest Team! Team SDCCU took a stand against MS at Walk MS 2014 with 168 team members bringing in $14,334! Visit MSwalk.com to register, volunteer or donate.
12
MS CONNECTION: WINTER 2014
RESEARCH
TALKING ABOUT STEM CELLS: PART 1 The National Multiple Sclerosis Society recently sat down with Dr. Richard Burt, Chief, Division of Immunotherapy at Northwestern University’s Feinberg School of Medicine in Chicago, Ill., to talk about hematopoietic stem-cell transplantation as a possible treatment for relapsing-remitting MS. An established international researcher, Dr. Burt pioneered the use of hematopoietic stem cells to treat autoimmune diseases. Could you explain the procedure that you’re testing? We are testing a procedure called hematopoietic stem-cell transplantation (HSCT). In HSCT, we use standard immune-suppressant drugs in a very short exposure and high dose to knock down the immune system, and then we give the patients back their own immune stem cells that we collected before the procedure. How does it work? In multiple sclerosis, the immune inflammation that destroys myelin requires two signals to get started: The first is exposure to myelin or something that looks like myelin, and the second is a danger signal that tells the body
there is a need for an immune attack. If either of these two signals is missing, you will not get the inflammation that causes MS. In HSCT, we are resetting the immune system. Think of it like a reboot of your computer, wiping the hard drive clean and starting over. The immune system learns all over again which things to fight (pathogens like bacteria and viruses) and which things to leave alone (myelin). We think what happens in HSCT is that the immune response is exposed to myelin in the absence of the danger signal and as a consequence is rendered harmless (tolerant), unable to do any more damage. What type of MS is most likely to benefit from HSCT? What we’re doing is stopping the inflammation that you need to treat when the disease is in its inflammatory stage, which occurs in relapsing-
13
NATIONALMSSOCIETY.ORG | 1-800-344-4867
remitting MS. We don’t think this treatment will benefit people with late progressive forms of MS.
of São Paulo, Brazil, and the University of Uppsala in Stockholm, Sweden, and the University of Sheffield in the UK.
OUR EARLY DATA SUGGESTS THAT HSCT DOES SOMETHING THAT SECOND-LINE THERAPY HAS NEVER DONE: IT REVERSES DISABILITY AND SIGNIFICANTLY IMPROVES QUALITY OF LIFE.
Are there any risks?
Are you still recruiting people for your trial? The trial is open and ongoing. We are looking at people who have failed a first-line therapy and who have opted for stem-cell transplantation over a second-line treatment. Our goal of the trial is to establish in a randomized trial that this is the proper role for HSCT. Our early data suggests that HSCT does something that second-line therapy has never done: it reverses disability and significantly improves quality of life. (Visit www.nationalMSsociety.org/ clinicaltrials for more information about how to participate in clinical studies.) There are different centers performing HSCT around the world. Is the treatment standardized in any way? I hope that when our clinical trial data is published, it will help standardize HSCT. We are coordinating the trial at a few other centers around the world, including the University
All procedures come with risk, but you can minimize them if you follow proper procedures. For example, in HSCT, there is a risk for infertility, although many trial participants have gone on to become pregnant. As a precaution, we encourage people who are concerned about infertility to consider options such as sperm or egg storage prior to the procedure. Late complications of this procedure unique to MS that may arise in a small subset of participants are hypo- or hyperthyroidism, or more rarely, a drop in platelets that may require transient medical treatment. Most people get blood transfusions during this treatment, so there is a small risk of infection with HIV or hepatitis. In my lifetime, I’ve probably transplanted about 1,500 patients and none have had any problem. Originally published on www.MSconnection. org/blog. Join the conversation about stem cell treatments at www.MSconnection.org.
14
MS CONNECTION: WINTER 2014
LIVING WITH MS
RESOURCES FOR THE HOLIDAYS The holidays can be a festive time to celebrate with your loved ones but to some with limited income, the holidays can be filled with stress. If you or someone you care about is in need of help around the holidays, reach out to your local 2-1-1 resource and information center to get connected to holiday assistance programs available in your area. Services including holiday meals, gift baskets and even toys for children may be available to individuals and families in need.
2-1-1 is a resource and information center that connects people with community, health and disaster services through a free, 24/7 phone service and online database. It’s a valuable community resource for the holidays and beyond. See below for an office that serves you. San Diego County 858-300-1300 211sandiego.org
Orange County 949-646-4357 211oc.org
SAVE THE DATE
FUELING IMPACT: ANNUAL MEETING OF MEMBERS Saturday, January 31 Laguna Cliffs Marriott 25135 Park Lantern Dana Point, CA 92629
As a member of the chapter, you are invited to participate in our Annual Meeting of Members. This year, our focus is on “Fueling Impact,” which encourages us to celebrate and grow our personal and collective impact as leaders in the MS movement, and highlights our responsibility to inspire and empower others to leverage and extend their passion, skills and connections even further. We will recognize outstanding volunteers, elect our Board of Trustees, review our annual report, and hear about stem cell research and therapies from Dr. Larry Goldstein. Learn more, register, or submit your proxy vote at http://annualmeeting.MSpacific.org.
15
NATIONALMSSOCIETY.ORG | 1-800-344-4867
FUNDING THE MISSION
NEARLY $2.2 MILLION FOR BIKE MS! Over 2,000 cyclists and 500 volunteers joined us on October 18 & 19 for the Bike MS Bay to Bay Tour, presented by Hansen Beverage Company, KTLA 5 and Fox 5 San Diego. Participants have raised more than $2 million so far and are well on their way toward reaching our $2.2 million goal! You can help us achieve this incredible goal by donating at biketofinishMS.com!
THIS IS WHY WE RIDE: MEET SELMA ADAM
Every year, we honor someone living with MS who participates in Bike MS as the Lloyd von Sprecken Most Inspirational Rider. This award was created in honor of Lloyd and his family’s determination to create a world free of MS. Lloyd, who lives with MS, and his son Todd rode a tandem to be a part of the event. They support many causes now, but we still remember those years watching Lloyd’s team encircle the tandem bike as it made its way up Torrey Pines Hill, each team member taking a turn to push it forward. This year, there were more than 60 brave souls who have MS and who rode 25, 100 or 150 miles to fight this disease.
Selma Adam (left) with Melissa Friedman
This year’s Most Inspirational Rider did that and more. Selma Adam couldn’t even ride a bike when she first joined Team Wescom to participate in the 2013 ride. She started physically preparing herself, nonetheless, with training wheels -- yes, training wheels! -- to make sure she could complete the ride, which she did. She took that commitment to the next level this year by becoming a team leader hosting her own training rides for others new to cycling. Not to lessen the huge inspiration that Selma’s physical achievements represent, her team captain shares that her greatest contribution to the team is her infectious enthusiasm and overthe-top positive attitude. Selma has yet to meet a rider on the road that she doesn’t cheerfully greet with a warm “hello” and “have a great ride!” This incredible mother of 5 is a true inspiration and her story has inspired the fundraising and recruitment of her team. In 2014, Team Wescom recruited 123 cyclists and they’ve raised over $137,000 so far!
16
MS CONNECTION: WINTER 2014
FUNDING THE MISSION
CHOOSE YOUR OWN ADVENTURE WITH DIY FUNDRAISING In 2014, Do It Yourself (DIY) Fundraising raised over $150,000 to support MS research and chapter programs. DIY is the opportunity for individuals and corporations in the community to support the Society through unique and creative fundraising methods. It allows anyone to support a world free of MS! All you need to do is use your imagination! This past year, we had several individuals host their own events in the community for the Society. These ranged from tennis tournaments to paddle outs, to swimming by Alcatraz to golf tournaments, all in the name of MS. Here are just a few examples of how one little idea can brew into something big to support people affected by MS: • The 4th Annual Betty’s Builders Golf Tournament is a visionary event supported by former board members and the Orange County construction industry. This event was held at the Journey at Pechanga and raised over $62,000 for the Society. • Several corporations join the movement and create employee DIY campaigns such as casual dress tickets, bake sales and raffles. Conrad Companies each December sells casual dress tickets to their employees
People “Paddle Out for MS” at the DIY event held in Ocean Beach
and donates the proceeds to the Society. This last year, they contributed over $2,300 for the cause. • The chapter was also selected as the beneficiary of other existing community events. We were chosen as beneficiary of golf events, walks, and neighborhood tastings. As the result of a personal champion for MS on their staff, the Society was chosen as the beneficiary of the SoftChoice Cares Golf Event held in September resulting in over $7,500. These are just a few of the remarkable examples of how those passionate about finding a cure for MS can help support the Society. Whether championing for the Society to be the beneficiary of a current event, asking a company to start a fundraiser, or creating a new event based on your interests, there is a way for everyone to join the movement. To learn more about DIY and start your event today, visit MSpacific.org or contact Heather at heather.dean@nmss.org or (760) 448-8417.
NATIONALMSSOCIETY.ORG | 1-800-344-4867
17
FUNDING THE MISSION
DONATE TODAY FOR A YEAR-END TAX DEDUCTION! Over the past year, the chapter has helped thousands of individuals affected by multiple sclerosis. This assistance and support would not be possible without the generosity of people like you. Think about how much each dollar helps those in need: • $5,000 helps support over 100 individuals with transportation vouchers, including Jerry, who takes the bus home each night from his care facility to have dinner with his wife. • $2,500 let us help Janise, who is her husband’s care provider. She works full time to support their family and was feeling the pressure of their expenses in addition to caring for her husband. With one of our many community partners, we were able to get a professional care agency to provide in-home respite care to give Janise the time she needed to take care of herself. • $1000 earns you membership in the Golden Circle Club. This prestigious club gets exclusive access to research news, salon events, lab tours, and more.
• $500 allowed us to provide a portable air conditioner to Melinda who was experiencing MS exacerbations during the summer heat waves. Melinda is just one of 15 members who received this assistance this year. • $250 let us provide a ramp for Pamela, so she could safely access her home on her own. • $100 allows us to provide something as simple as a family meal for Thanksgiving. We helped Joanne, a busy single mother of 2 who lives with the impact of MS, provide her family a pre-cooked meal. This allowed her to conserve her limited energy so she could enjoy the holiday with her family. Please allow us to continue our support of these individuals and families affected by MS. Consider making a year-end, tax-deductible gift by visiting donate.MSpacific.org or contacting Erich at erich.foeckler@nmss.org or (760) 448-8412. Every dollar helps us support our incredible mission.
18
MS CONNECTION: WINTER 2014
THANK YOU
INCREDIBLE FOUNDATION SUPPORT IN 2014
Many thanks to the following foundations & trusts who provided $89,000 in grants in 2014. With their support, we are able to help the 51,500 people affected by MS in Orange, San Diego and Imperial Counties, and the Hawaiian Islands. • Change A Life Foundation - $10,000 (Transportation Program) Covidien - $4,500 (Wellness Programs in Irvine, Costa Mesa, and Carlsbad) • Cushman Foundation - $3,500 (Wellness Programs in San Diego County) • Disneyland VoluntEARS Fund - $5,000 (2014 Holiday Turkey Program) • Employees Community Fund of Boeing California - $7,500 (Respite Care Program) • Friends of Hawaii Charities - $3,000 (Financial Assistance Program for Hawaii residents with MS) • O.L. Halsell Foundation - $5,000 (The Carol & Bob Webster Memorial Scholarship Fund) • Insperity - $1,000 (Financial Assistance Program) • Maurice J. Masserini Charitable Trust - $5,000 (2014 Day at the Bay Program)
• Morgan Stanley - $1,500 (Financial Assistance Program) • McGrory Family Foundation - $5,000 (Financial Assistance Program for San Diego County) • San Diego Gas & Electric - $10,000 (San Diego Aquatics Programs) • Dr. Seuss Foundation - $2,500 (2013 Sycuan Annual Holiday Party) • Vidinha Charitable Trust - $4,800 (Transportation for Kauai residents with MS) • Walter J. & Betty C. Zable Foundation - $5,000 (The Carol & Bob Webster Memorial Scholarship Fund) • The Zankel Fund - $25,000 (Respite Care)
SAVE THE DATE
GOLF MS INVITATIONAL 2015 The National MS Society and honorary chair, Doug Barnhart, Chairman of Barnhart-Reese Construction Inc., invite you to the 21st Annual MS Golf Invitational on Monday, May 4, 2015 at the La Jolla Country Club. Enjoy an afternoon of golf along with premier tee gifts, lunch, hosted reception, player awards, live auction, and a gourmet dinner. Don’t miss this rare opportunity to play on one of Southern California’s most exclusive private courses. For more information or to reserve your foursome visit GolfMS.org.
Doug Barnhart
Interested in getting more involved? Consider joining the Golf committee or sponsoring the event. For more information contact Heather at (760) 448-8417 or heather.dean@nmss.org.
19
NATIONALMSSOCIETY.ORG | 1-800-344-4867
FUNDING THE MISSION
CONNECT AT CHALLENGE WALK MS: A COMMUNITY OF SPIRIT & STRENGTH Over 175 Walkers joined us this past September at Challenge Walk MS. This amazing group raised over $600,000 for MS while creating awareness over their 3-day, 50-mile journey. Congratulations to our teams raising over $25,000 this year! • Hurt SO Good! - $65,612.98 • Aye, Aye Captain - $45,672.05 • NorCal Streetwalkers w/ Good Carma - $38,372 • Team Momentum - $37,723.81 • Pardee Homes - $27,805.84 Check out our Elite Feet Top Fundraisers, each raising over $10,000 each! 1. Anne Allen $32,900 2. Brian Grey $13,295 3. Jeanne Woodard $10,385 Thank you to our 2014 sponsors:
BRAND DEVELOPMENT ADVERTISING
MEET ANNE ALLEN Anne (pictured with her team in the center in the orange hat) was our #1 Top Fundraiser, and she was also inducted into the 2014 National MS Society Volunteer Hall of Fame for her incredible contributions over the years. Diagnosed with MS in 2006, Anne Allen registered for her first three-day 50-mile Challenge Walk MS in 2008 at the suggestion of physical therapist and friend, Sylvia. “Sylvia saw an advertisement and said, ‘why don’t we do this?’ and I was like, ‘OK.’” It is this same laidback attitude with which Anne navigates her journey with primary-progressive MS. As a self-described realist, she admits, “I know my MS is very progressive, but that’s okay. This disease only defines you if you let it, and it’s important to me that I do what I can… to find a cure and new treatments.” Anne completed her seventh Challenge Walk MS in September, and her team, Hurt So Good! also participates in Walk MS and Bike MS. To date, she has raised nearly $700,000 including $75,000 for a local respite care program to help provide temporary relief to family caregivers.
Challenge Walk MS is a personal challenge of spirit and strength that brings people together who want to make a big difference in the lives of people living with MS. Join us in 2015 from September 25-27. Learn more, register to walk or volunteer, or donate at myMSchallenge.com or 800-486-6762.
20
MS CONNECTION: WINTER 2014
SUPPORTING THIS MISSION
VOLUNTEERS MAKE IT HAPPEN! We simply could not do it without the help of thousands of volunteers each year! Within that special group are individuals who go above and beyond in the giving of their time to volunteer. This past November, we honored four outstanding volunteer leaders whose service earned them recognition at our National Conference in Fort Worth, Texas. Congratulations to our incredible National Volunteer Award Winners!
NATIONAL ADVOCACY HONOREE: RACHEL CHAMPAN Upon her diagnosis of MS in 2004, Rachel immediately connected with the Society in order to educate herself and her family about the disease. She realizes the importance of “speaking up” and “speaking out” while building relationships with those who can make a difference, and educating them on the issues that are important to people with MS, their families and their communities. Through visits, personal connection and persistent follow-up, Rachel has received support from state and federal legislators on important policies. Rachel and her family raise awareness on MS-related issues impacting minorities and underrepresented groups; her husband, Kevin, often joins her on advocacy visits, and one of her three grown children, Ashley, works
in government relations for the Society in Virginia.
NATIONAL FUNDING THE MISSION HONOREE: ANNE ALLEN Read about Anne’s incredible contribution on page 19.
NATIONAL HEALTH PROFESSIONAL HONOREE: JODY COREY-BLOOM, MD Dr. Jody Corey-Bloom has been treating people with MS for more than twenty years; including the most difficult cases and those without means. She strives to elevate understanding of MS in the community, including 14 years of leadership of the local MS Research Symposium for people with MS and neurologists, as well as outreach to local neurologists. Dr. Corey-Bloom has been the principal investigator on more 40 clinical trials for the treatment of various neurodegenerative disorders, has served as editor of Adult Neurology, and is currently professor of neurosciences at the University of California, San Diego, where she served as long-time director of the MS Center; she is co-chair of the Pacific South Coast Clinical Advisory Committee, and an active member of the Board of Trustees.
21
NATIONALMSSOCIETY.ORG | 1-800-344-4867
NATIONAL HEALTH PROFESSIONAL HONOREE: LIZBETH NAJM, LVN From speaking at events about the importance of carepartner self-care, to easing isolation of individuals living with progressed MS through “angel” visits, to single-handedly building, coordinating and sourcing supplies for the 12-member nurse support team for the three-day Challenge Walk MS, Lizbeth Najm is dedicated to the MS movement. For 26 years, Liz has volunteered with the Society in honor of her father who lived with MS for more than two decades. She is a trustee on the Pacific South Coast board, top fundraiser and captain of team “Leggin for Larry” which has raised more than $100,000 over the years. In addition to the Challenge Walk MS nurse team, affectionately known as the “Blister Busters,” Liz coordinates medical care at nearly every local MS event. Liz works as a surgical nurse and operating room materials coordinator at Whittier Hospital Medical Center. Want to get involved as a volunteer? Contact Linda at linda.ingram@nmss.org or (760) 448-8416. Or, you can fill out our online application at http://volunteer.MSpacific.org.
PA I D A D VE R T I S E M E N T COPAXONE® (glatiramer acetate injection) 40 mg Join us to be informed and empowered Date: Time: Speaker: Location:
Date: Time: Speaker: Location:
Date: Time: Speaker: Location:
January 13,2015 6:30 PM Dr. Benjamin Frishberg The Neurology Center of Southern California The Old Spaghetti Factory 111 N Twin Oaks Valley Rd, San Marcos, CA 92069 Tuesday, January 27, 2015 6:30 PM Dr. Benjamin Frishberg The Neurology Center of Southern California Capri Blu 4S Commons Town Center, 10436 Craftsman Way #120, San Diego, CA 92127 Tuesday, February 10, 2015 6:30 PM Dr. Benjamin Frishberg The Neurology Center of Southern California Phil's BBQ Event Center 3750 Sports Arena Blvd, San Diego, CA 92110
RSVP by calling 1-800-887-8100 or visiting www.CopaxonePatientEvents.com
COPAXONE® is a registered trademark of Teva Pharmaceutical Industries Ltd. © 2014 Teva Neuroscience, Inc. COP-42105
22
PA I D A D VE R T I S E M E N T
PAID ADVERTISEMENT
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
Thursday at 10:00
ET (4:00 pm
pm
ET (7:00
PT) and pm
PT)
Reserve your spot: MS-Web-Events.com
Novartis Pharmaceuticals Corporation East Hanover, New Jersey 07936-1080
Š 2014 Novartis
Printed in USA
7/14
T-XMG-1305858
23
PAI D ADV E R TI S E M E NT
Pregnant and have Multiple Sclerosis? A few questions you may have... Will MS affect my developing baby? Is my MS medication o.k. to take during pregnancy or while breastfeeding? MotherToBaby counselors provide up-to-date, evidence-based information for no charge about: • Prescription and over-the-counter medications. • Infections and diseases, like MS, and more... Help us help you learn even more about MS during pregnancy. The Autoimmune Diseases in Pregnancy Research Study needs pregnant volunteers today to help provide answers for tomorrow. To get your questions answered about MS medications during pregnancy or to learn about volunteering for an observational study, call toll-FREE (877) 311-8972 or visit PregnancyStudies.org. 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).
Find us on: @MotherToBaby
January 17, 2015 Saturday Morning 9:00 AM Pacific
TR277673
Hotel del Coronado 1500 Orange Ave Coronado, CA 92118
Revere Kinkel, M.D.
Director, MS Program, UCSD
Lilyana Amezcua, M.D.
Co-Director, USC MS Comprehensive Care Center & Research Group
12121 Scripps Summit Drive, Suite 190 San Diego, CA 92131
MARK YOUR
CALENDARS JANUARY 20: 22: 31:
Telelearning: MS Research Telelearning: MS Research Annual Meeting of Members
FEBRUARY 7: 12: 26:
Moving Forward: Program for the Newly Diagnosed Telelearning: MS Employment Part 1 Telelearning: MS Employment Part 2
MARCH 2-8: 12: 17: 19: 19: 26:
MS Awareness Week Telelearning: MS Employment Part 3 Telelearning: Managing MS Bladder & Bowel Symptoms Telelearning: Managing MS Bladder & Bowel Symptoms MS Symposium Telelearning: MS Employment Part 4
APRIL 11: 19: 25:
Walk MS Irvine Walk MS Carlsbad Walk MS San Diego
To learn more about any of these events, or to register, visit http://calendar.MSpacific.org.