Summer 2014 Pacific South Coast Chapter
MS Connection Newsletter
ARE YOU READY FOR A GREATER CHALLENGE? Bike MS (Page 5) & Challenge WALK MS (PAGE 4) CAN TAKE YOU THERE.
INSIDE 03 THIS ISSUE
DOUBLE YOUR GIFT TO THE SOCIETY
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mark your calendars for upcoming events
TIPS TO BEAT THE SUMMER HEAT
Neuroprotection and MS
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MS connection: Summer 2014
letter FROM THE CHAPTER PRESIDENT Welcome new board members Troy Parish and Ally McGrory! Troy is serving in honor of his wife, Heidi. Ally has chosen the National MS Society to serve her community! Are you or someone you know interested in learning more about our Board of Trustees? Contact Kerri Benecke at kerri.beneke@nmss.org or (760) 44-8414.
SUMMERTIME IS HERE! Dear Friends, It is once again time to embrace a new season, although it seems as if summer has been in Southern California for months now! We’re lucky to live in a place that allows us to get outdoors and do the things we love—gardening, cycling, walking and other fun activities! Here is what you can expect in this Summer MSConnection edition: • Hear about our upcoming events like Challenge Walk MS including a spotlight on team “Heart & Sole Sisters.” (Page 4) • Bike MS is back! Register today for yet another successful fundraiser. (Page 5) • Save the Date! Upcoming programs this summer include Moving Forward: Program for the Newly Diagnosed and the Orange County Research Symposium. (Page 7)
Connect with us online: MSpacific.org Like us: facebook.com/MSpacific Watch us: youtube.com/MSpacific On the Cover: Bike MS participants enjoy beautiful coastal views as they pedal to create a world free of MS. Challenge Walk MS participants enjoy an inspirational weekend raising money and awareness.
• New Event Alert: Join us at the inaugural Bubbles and Brunch to End MS in August. (Page 13) • Learn tips and tricks to minimize the effects of the heat and stay cool! (Page 14) • Thank you to our sponsors & fundraisers for helping the chapter achieve a successful Walk MS (Page 18) & Golf MS (Page 13)! However you get involved this summer, we thank you! Sincerely,
Richard V. Israel Chapter President
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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 not only want to 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.
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 Associate Editor: Leslie Roach © 2014 National Multiple Sclerosis Society, Pacific South Coast Chapter
Simply ask your human resource department if your company has a matching gift program and follow it. 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 www. 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!
Information provided by the Society is based upon professional advice, published experience and expert opinion. Information provided in response to questions does not constitute therapeutic recommendations or prescriptions. The National Multiple Sclerosis Society recommends that all questions and information be discussed with a personal physician. The Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The Society assumes no liability for the use or contents of any product or service mentioned.
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MS connection: Summer 2014
CHALLENGE WALK MS
THE HEART AND SOUL OF THE HEART & SOLE SISTERS By Virginia Marshall There’s more than one way to join the fun of Challenge Walk MS! No matter how you choose to join, we promise you won’t regret doing your part to help people living with MS. Southern
ICalifornia started 2014 participating in Challenge Walk MS in 2003. At the time, I was just looking for the personal challenge; I had no connection to multiple sclerosis. I called my sister, JoAnn to see if she would join me. JoAnn had a friend who had recently been diagnosed with MS, which sealed the deal. We were off and training! The first year was exciting; walking from Carlsbad to San Diego was definitely something to be proud of. By year two, we had seven girlfriends that accepted the challenge. As I continued to fundraise, I found that I was connected to MS in many ways – a girlfriend’s mom, another’s sister, a daughter and many more. I began to hear about what the MS Society was doing for these individuals by providing classes, support groups and needed equipment. My fundraising was and is making a difference. Since 2003, Sole Sisters (now Heart & Sole Sisters) has raised in excess of $150,000. I have personally logged 750 Challenge Walk miles. In 2010, my daughter, Kimi, joined the
team. In 2011, I signed up for the Charleston Challenge Walk in South Carolina and have been doing two walks a year ever since. Last September, at age 14, my younger daughter, Whitney came on board. Whitney has completed two Challenge Walks in less than a year, and she is truly an inspiration. When asked why she walks, Whitney says, “I walk for those who can’t.” Heart & Sole Sisters is committed to walking until we can put an end to this disease. When that day comes, we will continue to walk to celebrate those “who can.” Join team Heart & Sole Sisters and others on this three-day, fifty-mile journey along the Southern California coast September 5-7 for a weekend you’ll never forget.
To learn more or register as a walker or volunteer, call 800-486-6762, visit myMSchallenge.com, or email MSchallenge@mspacific.org.
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nationalmssociety.org | 1-800-344-4867
Bike MS
I RIDE WITH MS People who ride in Bike MS may do so to support family members, friends, or coworkers who have been diagnosed with MS. But, there are also legions of participants who live—and ride— with the disease, despite challenges such as fatigue or weakness. Toni was diagnosed with MS in 2004 and formed her team, “Mighty Striders,” in 2012 and has been fundraising and participating since. Determined not to let her MS bring her down, Toni pushes herself to try new things and accomplish goals on her bucket list, including running six half marathons and riding three century bike rides. “Bike MS makes me feel better and more like I’m doing something to help eliminate MS eventually,” said Toni. But MS is not just a personal challenge; Toni’s daughter also lives with the disease. “My symptoms are different than my daughter’s but I feel like I need to do everything I can to be an encouragement for her,” said Toni, who will be participating in “I Ride with MS,” a special Society program that celebrates Bike MS participants who are also living with multiple sclerosis. Genzyme and MS One to One, and Primal Wear are proud supporters
Bike MS Bay to Bay Tour (Irvine to San Diego) October 18-19, 2014 biketofinishMS.com Bike MS Go Big or Go Home (Kona, Hawaii) August 2-3, 2014 bikeMShawaii.org of the “I Ride with MS” program, available through all 100 Bike MS events nationwide. Cycling is not the only way to get involved! Diane was diagnosed with progressive MS in 1995 and uses a wheelchair full-time. But that doesn’t stop her from being a Virtual Rider and Team Captain. “I’m not the one doing the leg work, but I’m doing the brain work,” said Diane. “Besides raising money for this event, I’m helping spread awareness on what MS is and its multilayered effects on people diagnosed with it.” This will be Diane’s first Bike MS event. Mile after mile, Bike MS is a ride like no other. Together we build lifelong connections, achieve individual and collective milestones, and help those living with MS move their lives forward. Every mile we ride and every dollar we raise make a difference to the 51,500 people affected by MS in Orange, San Diego, and Imperial counties, and the Hawaiian islands.
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MS connection: Summer 2014
Public Policy Conference
Become An MS Activist By Angie Brenner Matthias
In June 2011, I was diagnosed with MS at age 27. In January 2013, after three consecutive exacerbations, I reached a breaking point. Just a few months later, I reclaimed my empowerment and became an MS Activist. This is my story and I intend to use it. What about yours? If you live with MS, know someone who does or simply feel passionate about ending it, then you have the power to drive change. That potential lies in your stories. As a lifelong writer, my appreciation for storytelling is inherent. And as a member of the MS community I’m mindful that our words are powerful. Particularly when spoken to elected officials, lawmakers and other influential figures that can help move us closer to a world free of MS (and make it more livable in the meantime).
Earlier this year, I had the opportunity to visit Washington, D.C. for the Society’s annual Public Policy Conference and then Sacramento for the MS-CAN Capitol Action Day. Along with other passionate colleagues, I visited congresspersons, senators and assembly members. We told our stories in the context of driving legislative and budgeting initiatives that will further research, improve healthcare and increase awareness of MS. I even appeared in a press conference back home in San Diego. If you have a story, use it. The time for action is now: become an MS Activist. Learn more about becoming an MS Activist by contacting Aarushi Malhotra at aarushi.malhotra@nmss.org or (714) 689-9613. Or visit us at MSpacific.org and select “Advocate for Change” on the left navigation.
When I joined the chapter’s Government Relations Committee (GRC) last spring, I had no formal experience with politics, policy or patient advocacy. What I did have were a lot of questions like: Why isn’t healthcare coverage easier and more affordable for individuals living with MS? And why aren’t our government agencies funding more research? If you’ve ever asked questions like mine, you’re already well on your way to becoming an MS Activist.
Angie Matthias, Congresswoman Susan Davis and chapter EVP, Karen Hooper
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nationalmssociety.org | 1-800-344-4867
Mark your calendar
local events Orange County Research Symposium Saturday, July 12 8:30am – 12:30pm Irvine, CA Listen to Dr. William Hornstein and a panel of wellness professionals discuss how to live well with multiple sclerosis. To register, call 1-800-344-4867 and press “1” or visit http://calendar.mspacific.org and click on July 12, 2014.
Moving Forward: Program for the Newly Diagnosed Saturday, August 16 8:30am – 12:00pm San Diego, CA If you have been diagnosed with MS in the last three years, this is a program designed just 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. To register, please call 1-800-344-4867 (1-800-FIGHT-MS) and press “1” or visit http://calendar.mspacific.org and click on August 16, 2014.
Professionally-led Group for Parents with MS
Parenting during a child’s adolescence can be challenging. MS is a chronic and disabling illness that can add to the many stressors of parenting. Parents with MS need the extra support to help succeed in their roles as parents. If you are a parent living with MS, we welcome you to participate in a six-week long professionally led group this summer. Starting in July, in both Orange County and San Diego County, this group will educate parents on the common difficulties of parenting with MS. Limited space is available. For more information, contact Aarushi at (714) 6899613 or aarushi.malhotra@nmss.org.
8 SELF-HELP GROUPS 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
MS connection: Summer 2014 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
Brea 1st Friday, 10am - 12pm Jim Langdon 714-392-2052 langdon.james1942@gmail.com Lisa Seifert 714-826-6393 mcbryde99@hotmail.com
Huntington Beach: Working with MS 1st Tuesday, 6:30 - 8:30pm Laurie Cable 714-969-8298 lderble@aol.com Karen Patterson 714-377-4006
Corona Del Mar: Minimal Symptoms/Newly Diagnosed 3rd Wednesday 1:30 - 3:30pm Sherri Brash 714-846-2064 SherriB@socal.rr.com
Irvine: Walkers & Rollers 2nd Wednesday 10am - 12pm Jack Santos 949-786-3421 jackandlinda1948@gmail.com Bonnie Richmond 949-677-4272 sambon@pacbell.net
Santa Ana: Man to Man 1st Wednesday 10am-12pm Mike Milne 949-215-8502 mcmilne@cox.net Jack Santos 949-786-3421 jackandlinda1948@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
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 - 8pm 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 Stanton 1st Tuesday 12:30 - 2:30pm Rosa Ferreras 714-758-0829 rosam58@me.com Yorba Linda: Family & Friends Welcome 2nd Monday & 4th Friday, 10am - 12pm Kathy Kelby 714-525-0686 kkacacia@aol.com Rob Lammers 714-528-8404 robert.retired@hotmail.com
SAN DIEGO
Carlsbad: Newly Diagnosed 1st & 3rd Saturday, 12 - 1pm carlsbadselfhelpms@gmail.com 760-448-8403 Chula Vista: En Español Llame para más información. Fernando Palomino 619-691-7964 Chula Vista St. Marks Lutheran Church 850 Hilltop Dr. 3rd Wednesday, 11am - 1pm Yosel Tarnofsky 619-516-0411 yosel.tarnofsky@yahoo.com
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nationalmssociety.org | 1-800-344-4867 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 Beth Bradsher 760-747-9096 sbbrad@cox.net Michele Easterling 760-805-6390 m.easterling68@gmail.com Escondido: Christian Group HopeKeepers Escondido 4th Saturday, 11am - 1pm Cross Connection Escondido 1675 Seven Oakes Rd. Room 4 Jim Johnston 760-746-4279 hopekeeperjim@gmail.com Oceanside Oceanside Library 3861 Mission Avenue 1st Thursday, 12 - 2pm Juanita Hamilton 760-754-1911 juanita.h@cox.net Poway Weingart Center 13094 Civic Centre Drive 1st Thursday, 6:30pm Peggy Green 858-748-4009 pegjean@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 Support Group for People csrohan@crohan.com Experiencing Progressing San Diego (Clairemont/La Jolla) MS Symptoms Denny’s Restaurant 2nd Tuesday of Every Month 4280 Clairemont Mesa Blvd. 10:00am - 12:00pm 1st Thursday, 9:30 - 11:30am Facilitator: Alicia Ring Debbie Hornstein, MSW 858-456-8766/ 858-229-6600 Neighborhood aring24@san.rr.com Community Center 1845 Park Avenue San Diego: Men’s Group Costa Mesa, CA 92627 Kaiser Education Center 714-689-9613 San Diego
professionally-led support groups in Orange & San Diego Counties
10990 San Diego Mission Road 1st Tuesday, 5:30pm Mike Kolender 858-274-7114 mdkolender@aol.com Marcus Brown 619-248-2667 marcusib@yahoo.com
San Diego (Mid-City) Kaiser Education Center San Diego 10990 San Diego Mission Road 4th Monday, 2 - 4pm Stephanie Russell 619-224-6156 garyptloma@cox.net Spring Valley New Seasons Church 2300 Bancroft Drive 2nd Saturday, 12:30 - 2pm Angela Kretschmar 619-303-7806 gela0726@gmail.com
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 Caregiver Support Group 3rd Thursday of Every Month 6:30-8:00pm Facilitator: Seraphina Galante, MSW, Family Consultant Southern Caregiver Resource Center 3675 Ruffin Road, Suite 230 San Diego, CA 92123 (858) 268-4432, ext. 112
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to attend any of the listed classes, a waiver is required. please contact (800) 344-4867 to request a waiver today.
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
Chula Vista: Outdoor Loma Verde Pool 1420 Loma Lane Thursdays, 12 - 1pm
Fullerton Friends in Christ Lutheran Church 2311 E. Chapman Avenue Wednesdays, 10:30 - 11:30am
El Cajon: Outdoor/Indoor St. Madeline Sophie’s Center 2119 East Madison Avenue Mon, Wed & Fri, 11:30am - 12:30pm
Huntington Beach Yoga Works 301 Main Street Wednesdays, 1:00 - 2:00pm
in your neighborhood
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
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.
Irvine: Indoor Arthritis Foundation Approved Class Waterworks Aquatics 25 Waterworks Way Tues & Thurs, 10:30 - 11:15am
San Diego: Pilates Comprehensive Therapy Service Inc. 5677 Oberlin Dr. Suite 106 Mandy Johnston 858-457-8419 $10 per class San Diego: Yoga Marquis Pilates 10425 Tierrasanta Blvd., Suite 102 San Diego, CA 92124 Tuesday, 7:15-8:15pm Fee based class. For more information, please call 858-499-0044.
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nationalmssociety.org | 1-800-344-4867
Volunteers MAKE IT HAPPEN
VOLUNTEER AT MORE THAN ONE EVENT By Kelley Ezzard
Three days. Fifty miles. A world free of MS. In summer 2013, we did not anticipate the power behind those simple words. To our surprise, joining the crew for Challenge Walk MS 2013 led to the start of what can only be called a growing family. The Challenge Walk experience was unlike anything we could have expected. We walked away from those three days wanting to give back so much more. Just one month later, we became captains of the San Elijo Hills rest stop for Bike MS 2013 and we look forward to participating in any way we can, for many years to come! Today, we serve as Extra Mile Committee sub-chairs for Challenge Walk 2014 and will be taking the challenge ourselves by walking for the first time. You could say we are hooked on finding a cure for MS and what better way to do so than in the company of extraordinary individuals.
Thank You to Our Fantastic Interns! Jeressa Balagot Interning at the National MS Society has been a wonderful experience that has given me invaluable insight about the developmental aspects that go into creating successful events. I was able to learn and work in a positive team environment and was surrounded with devoted individuals who truly care about making a difference. I had the opportunity to develop personal bonds with the people I have encountered and gained valuable skills, which have allowed me to learn about my personal attributes and future goals. Jonalyn Rico I am a senior at SDSU. My experience here at the National MS Society has been a memorable and great learning experience. I’m very appreciative to be given the opportunity to intern here because it allowed me to work with compassionate people who want to find a cure for MS and work with staff and volunteers who donate their time to help those in need. Being a part of the events and seeing thousands of volunteers and sponsors made this experience priceless and has encouraged me to continue my volunteer efforts after my internship is completed.
SUMMER INTERNSHIPS! We are looking for Interns to join our Fundraising Events Team this summer! Learn how mass-market events are managed at a large, nationally respected non-profit organization and become part of the overall movement to end MS! Our Development Interns will work with the Fundraising Engagement Team to increase corporate team participation at fundraising events. Key responsibilities include researching current corporate teams to identify donation history, identify new corporate contacts to increase corporate team participation, ensuring proper utilization of Matching Gifts Programs of corporate teams, and much more! To find out more information on our summer internship program, please contact Linda Ingram at linda.ingram@nmss.org or (760) 448-8416.
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MS connection: Summer 2014
IN MEMORIAM
REMEMBERING DR. CHIPPENDALE “I am of the opinion that my life belongs to the whole community, and as long as I live it is my privilege to do for it whatever I can. I want to be thoroughly used up when I die, for the harder I work the more I live. I rejoice in life for its own sake. Life is no “brief candle” for me. It is a sort of splendid torch which I have got hold of for the moment, and I want to make it burn as brightly as possible before handing it on to future generations.” - George Bernard Shaw Dr. Thomas Chippendale and Tricia Chandler, MS Ambassador
By Tricia Chandler For nearly 20 years, Dr. Thomas Chippendale was my partner in managing my MS. I would not be the person I am today had it not been for his support, compassion and knowledge. He had a gentle soul, a kind heart and a calmness about him that made him not just a wonderful physician, but friend. After an eight month battle with lung cancer, one of the most significant people in my world passed away April 2, 2014. I had the privilege of spending time with him as he went through his treatments with dignity and hope. When I asked him if he had any regrets as he looked back on his life he said this: “I’ve loved and been loved. I’ve had the honor of being a healer. I’ve raised three children
into independent adults. My only regret is that I could have been kinder.” His family, friends, colleagues and patients would agree that he was nothing but kind to everyone he encountered. The poem above was printed on the program at his celebration of life. The words describe exactly the way Dr. Chippendale felt about living and dying. You are gone but will never be forgotten. Thank you for being such a wonderful example of a human being. Dr. Chippendale was a prominent healthcare partner of the Society. He served as a member of the chapter’s Clinical Advisory Committee for nearly two decades, working to create a world free of MS.
nationalmssociety.org | 1-800-344-4867
FUNDING THE MISSION
GOLF MS HITS THE MARK! The 20th Annual MS Golf Invitational sponsored by Torrey Pines Bank took a drive at MS on May 5 at La Jolla Country Club raising $140,000! President and CEO of the San Diego Chamber of Commerce, Jerry Sanders served as the Honorary Chair and gave a moving speech about his connection to MS and his passion for the San Diego community. LPGA Tour Pro, Heather Drew who lives with MS, was also at the event to share about her experience with MS. Everyone in attendance enjoyed a great day on the course with fun contests, a fabulous auction, a cocktail reception, gourmet dinner, and so much more! It truly was a great day of golfing to create a world free of MS. If you are interested in learning more about our event in 2015, please contact Heather Dean at (760) 448-8417 or heather.dean@nmss.org.
Chapter President, Rich Israel with Heather Drew, Craig Cornell and Mark Drucker
13 paddLE FOR A CURE: diy eVENT HITS THE WATER AGAIN! We are proud to announce that the 2nd Annual Wave Goodbye to MS Paddle for a Cure will be held on Saturday, October 11 at Crown Point Shores. Last year this “Do It Yourself ” fundraising event hosted by two long time surfers and MS advocates, Steve Bettis and Mitch Murphy, raised over $21,000 to support our mission and this year they have plans to raise even more! Don’t miss out on this fun festival including live entertainment, an auction drawing and so much more. To learn more or register for this event, visit wavegoodbye.org.
Ever thought about hosting your own event to support the Society? There are all kinds of ways to help raise funds for the Society including a bake sell, poker night, tennis tournament, golf outing, dinner party and much more. Learn more about DIY events at MSpacific.org or contact Krystal at krystal.thompson@nmss.org or (760) 448-8434.
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MS connection: Summer 2014
LIVING WITH MS
beat the heat Summer is here and while this means spending more time outdoors for some, it may mean overheating and rising energy bills for others. But don’t feel defeated! Learning to minimize the effects of the heat is the key. Here are some ways you can beat the heat: Drink plenty of fluids. • Water is the fluid of choice. • Drinking cool water can help keep you cool. • Avoid caffeine as this acts as a diuretic. Use fans, air conditioning, even hand-held spray bottles. • Air-conditioners can be tax-deductible with a document from your physician. • Contact your local gas and electric company to ask about programs that may help decrease the cost of your monthly bills, such as the Medical Baseline Allocation Program and the Low-Income Home Energy Assistance Program (LIHEAP). Wear cooling garments such as vests, headbands and neckbands. • Companies like Polar Products offer cooling products such as vests, hats, neck wraps, etc. Visit their website at polarprod ucts.com or call 1-800-763-8423. • A simple damp towel can be helpful, if you do not have one of these products. • Traditional wide brimmed hats and light- colored loose clothing can also help.
Exercise in a cool environment. • If you are exercising outside, pick the cooler times of the day, usually early morning or evening. • If exercising inside, using air conditioning or a fan can help maintain body temperature at an appropriate level. • Exercising in cool water (recommended temperature 80-84 degrees) is an excellent way to combat heat during physical activity. For more information on our aquatics program, visit the “Health and Wellness Class” page in this newsletter. For more information on these resources contact us at (800) 344-4867.
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nationalmssociety.org | 1-800-344-4867
SUPPORTING THE MISSION
CONGRATS 2014 Scholarship Recipients
The National MS Society Scholarship Program helps students affected by multiple sclerosis pursue a college or technical school education. This year we are awarding $36,000 to19 local senior high school scholars.
HERE ARE SOME OF OUR 2014 Carol & Bob Webster Memorial Scholarship Fund Recipients! Claire Gallagher Westminster, CA Marina High School
Catherine Kaiser San Diego, CA Westview High School
Alissa Pacarro Honolulu, HI Saint Francis High School
Reuven Goodwin San Diego, CA Southern California Yeshiva High School
Erika Lopez-Carillo San Diego, CA Point Loma High School
Tabitha Schultz San Diego, CA Luther Preparatory School
Brandon Green Laguna Hills, CA Saddleback Christian School
Max Lynd Lake Forest, CA El Toro High School
Patrick Thompson San Diego, CA Del Norte High School
Cecelia Hidalgo Orange, CA Foothill High School
Kymia Majouri San Diego, CA Cathedral Catholic High School
Andrew Vargas La Habra Heights, CA La Habra High School
Keli Jackson Kailu Kona, HI Hawaii Preparatory Academy
Julia McGonigal Carlsbad, Ca High Tech High North County
Leah Wilschetz El Cajon, CA Valhalla High School
Makena Kaaialii Honolulu, HI Henry J. Kaiser High School
Cory Moore El Cajon, CA Granite Hills High School
These deserving scholars were evaluated on financial need, academic record, leadership and volunteer activities,
a statement of educational and career goals, and letters of recommendation. Scholars were also asked to provide a personal statement describing the impact MS has had on their life. In speaking about how MS has changed his father’s life, one of our scholars stated, “MS has had a huge impact on my life as well and has helped me become the young man I am today. MS has taught me many life lessons while also challenging my family and me to stay strong during hard times. It has affected our lives both socially and financially.” Special thanks to VIMS, OL Halsell, the Walter and Betty Zable Foundation and other private donors for supporting this program. If you would like to fund a scholarship for deserving students impacted by MS, please contact us at 1-800-486-6762. To learn more about our national scholarships, visit nationalMSsociety.org/scholarship.
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MS connection: Summer 2014
SUPPORTING THE MISSION
VIMS HONORED AT SPIRIT OF VOLUNTEERISM AWARDS Volunteers in Multiple Sclerosis (VIMS) has provided a 25-year legacy to help those affected by MS in Southern California pursue their educational dreams.
VIMS members and chapter staff at the awards ceremony
At the OneOC Spirit of Volunteerism Awards, we honored VIMS for founding the Bob and Carol Webster Memorial Scholarship Fund that assists those affected by MS attend college. Often times, families affected by MS endure heavy medical costs and often struggle to pay for education.
Many thanks to VIMS for helping the chapter raise awareness about MS and sent dozens of scholars to college (see page 15 for a list of our 2014 recipients).
Unique WayS to Show SupporT! Are you having a wedding this year and do not know what to give your guests as favors? Consider making a donation to the Society in their honor. This can be a very personal touch to add to your big day and show your support of a wonderful cause. Do you have a birthday approaching and are not sure what you want? Have your friends and family make a donation to the Society in your name. Everyone loves giving meaningful gifts and what is more meaningful than the gift of helping others?
Wondering how to make your anniversary special this year? Make a personal gift and encourage others to support your love and commitment by contributing to those affected by MS. These are just a few ideas how you can utilize tributes to support the mission to create a world free of MS. For additional information or to begin your own tribute page visit MSpacific.org.
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nationalmssociety.org | 1-800-344-4867
FUNDING THE MISSION
MISSION POSSIBLE Several years ago, the Pacific South Coast chapter created a club to honor and recognize individuals who have gone over and above their commitment to funding the Society’s mission: To create a world free of multiple sclerosis. The Mission Possible Club is committed to the cause, care, and cure for MS, recognizing annual gifts and/or fundraising totaling $10,000 or more in the course of a calendar year. This distinguished group of individuals has contributed and fundraised hundreds of thousands of dollars each year to accelerate cutting-edge MS research and expand the chapter’s local programming for people with MS. This year alone, the Mission Possible Club raised over $1 million. The Mission Possible Club has become a symbol of excellence and one of incredible achievement. We recognize these outstanding individuals with benefits that include exclusive lab tours, VIP experiences at Walk MS and Bike MS, and more! To learn more about joining or to see additional benefits, visit http://tinyurl.com/MS-missionpossible. Many thanks to these amazing individuals, corporations, and foundations who are committed to creating a world free of MS.
2014 MISSION POSSIBLE Anne Allen Ralph Ames Glenn Arnold Jack & Terry Babbitt Bryon Barnes Art Barter Al & Casey Basso Dawn Beattie Steve Bettis Matthew & Tiffany Birkett Bill & Kristi Bisch Phil & Arlene Bresnick Sam & Betty Brusco Ron & Guadalupe Cohn Emily Cole Jody Corey-Bloom Paul Dechary Dave & Gail DeCruz Glen Sullivan & Pam Fair Greg & Annamaria Ferree Dan Fischer Lisa Fujimoto Don Goodwin Dick & Lynn Gordon The Josephine Herbert Gleis Foundation
Brian Grey Alan Grossberg Grossmont Healthcare District Hausman Family Foundation James Heaton Wayne Hickey Rona Kay Kathy Kirk Wiliam Klein Monique Lafleur Joshua Lesser Mahr Family Trust Victoria Mastrocola Lois Mastrocola Roger & Barbara Maurais Jay & Tina McCabe Ken McKinley John & Mary Lou Micheaels Robert Moore Javier & Doris Morgan John & Jodi Most Mark Neilson Marjorie Noyes Christina Padien Lillian Pagano Troy & Heidi Parish
Doug Peterson Alan Peterson Justin Reckers Doug & Denise Regnier Cindy Roper Arthur Rosten Tim Salmon Anthony Scaramucci Chris Serocke Paul & Mary Smigliani Christopher Steiger Jamie Sutherland Kenneth Tudhope Diana Twadell Alexi & Linda Varanko Vencil Family Trust Jeff Walsworth Robert & Carol Webster Dan & Saroya Williamson Bob & Jeanne Woodard Zankel Family Foundation
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MS connection: Summer 2014
research
Neuroprotection and MS After the Society’s webcast, Promising MS Research to Repair, Protect and Restore the Nervous System (www.nationalMSsociety. org/webcasts), we sat down with Dr. Rhonda Voskuhl, MS program director at the University of California, Los Angeles, to discuss the work her lab is doing in the area of neuroprotection. Could you explain how neuroprotective therapies would be different from the therapies we have now?
The therapies we have now were designed based on our understanding of the immune attack that occurs in multiple sclerosis, where immune cells attack the brain and spinal cord. They have been successful in that they reduce relapses by half or more, but they don’t halt permanent disability accumulation. Neuroprotective therapies would target cells in the brain and spinal cord, namely neurons, oligodendrocytes and astrocytes (important cells in the brain) to build up their resistance to or protection from an immune attack. The neuroprotective therapies may have minimal effect on relapses, but would likely have a great impact on permanent disability accumulation – and they may even cause some reversal or improvement in disability.
In both genders, sex hormones can directly affect brain cells. We’ve studied several mechanisms involved in neurodegeneration (nerve destruction), as well as cells related to that process. We also have focused a lot on sex hormones. Estrogen (in females) and testosterone (in males) can be very neuroprotective and directly affect brain cells. We’ve completed several preclinical studies as well as two clinical trials in sex hormones, and we have two additional ongoing trials, with another trial planned. We’d love to hear more about the research exploring sex hormones in men.
Eventually, there may be a common theme between women and men in the sense that testosterone is naturally converted to estrogen in the brain. Therefore, if you treat women with estrogen and men with testosterone, you could end up in the same place – binding to estrogen receptors in brain cells to cause protective effects. Specifically related to testosterone in men, we’ve done extensive preclinical work and
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have seen much improvement in both walking and cognitive outcomes, which included neuroprotective mechanisms. In a small pilot clinical trial, we gave testosterone to men with MS and found a 67 percent reduction in the whole brain atrophy rate, as well as an improvement in their cognitive testing. In a paper published this year in Neuroimage Clinical, our collaborator Dr. Allan Mackenzie-Graham found that the slowing of brain atrophy in this trial was due to both a halting of cerebral cortical gray matter atrophy and also some gray matter gain or restoration during testosterone treatment. We are now hoping to follow that study with a larger study we just submitted to the National Institutes of Health. With up to 25 sites across the U.S., this would be a much larger study of 110 men with MS and will be placebo controlled. We will be looking for improvements in outcomes that are very important for disability and cognition in men with MS.
19 We are still enrolling participants in this trial with sites at University of California, Los Angeles, Colorado, New Mexico and University of Pennsylvania. This study is very similar to the study of testosterone in men – however it will have cognition as the primary outcome. We also have another study exploring estrogen’s potential effect on relapses in women with MS. Preclinical data has shown that, in addition to being neuroprotective, estriol is also anti-inflammatory. On the other hand, testosterone appears to be only modestly anti-inflammatory, but appears to be more dramatically neuroprotective. What excites you most about this area of research?
Are you seeing similar results related to cognition in women with estrogen supplementation?
We know that pregnancy is good for MS, and that estrogen is high during pregnancy. We also know that men don’t get MS as often, and when they do, it is often later in life when their testosterone has begun to drop. So we’re taking something that we know is clinically significant and relevant to people with MS, and then trying to figure that out. It’s a different approach that starts with people with MS and then asks, “What phenomena are going on here that we don’t understand? Can we figure it out? And can we capitalize on it?” It will involve many molecules and many mechanisms because it’s a dramatic clinical effect that we’re trying to understand. And I think that’s why treatments using this approach will work – they’ll work through many mechanisms rather than one.
We have an ongoing trial of estriol, the safest of the estrogens, which is present during pregnancy.
Originally published on www.MSconnection. org/blog.
Testosterone may have several other positive sideeffects in men with MS – it’s known to improve muscle mass and muscle strength, improve bone density, decrease fatigue, and improve cognition in older men going through andropause. In addition, this trial will provide valuable information about the safety of testosterone supplementation for men with MS.
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connection:Summer SPRING 2014 2014 MSMSconnection:
FUNDING THE MISSION
Walk MS RAISES $1.5 MILLION!
During the month of April, more than 11,000 participants and volunteers raised $1,500,000 at Walk MS! Funds raised at Walk MS provide assistance to individuals affected by MS right here in our own community. Thank you to everyone who came out and helped make this year’s Walk MS a success! A special thank you to all of our Walk MS sponsors who either supported the event with cash to underwrite expenses or donated goods and services which allowed the Society to contribute more towards creating a world free of MS. Be a part of the fun in 2015 by visiting MSwalk.com. Title Sponsor
Platinum Sponsors
Presenting Sponsors
DIAMOND SPONSOR
Gold Sponsors
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nationalmssociety.org | 1-800-344-4867
CONNECT WITH THE CARE YOU NEED EvERY CONNECTION COUNTs
Brian, diagnosed in 2012 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)
nationalMSsociety.org/CalServices
AGENTS of change MISSION:ELIMINATE MS November 22, 2014 Loews Coronado Bay Resort REGISTER ONLINE AT: MSDINNERAUCTION.COM
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MS connection: Summer 2014
Friday, June 20, 2014 at 6:30 PM Pacific Fogo de Chão 668 6th Ave San Diego CA 92101 Regina Berkovich MD Prof of Neurology at USC Revere Kinkel MD Director of MS Center at UCSD
TR257350
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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
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nationalmssociety.org | 1-800-344-4867
NEW EVENT!
bubbles & bruncH TO END MS
Join us at the inaugural “Bubbles & Brunch” to End MS Fundraiser! The National MS Society is pleased to announce the upcoming inaugural “Bubbles & Brunch” Connecting for a Cure Fundraiser will be hosted this summer on Saturday, August 23, 2014 at the beautiful Balboa Bay Club. Guests will enjoy a mimosa-laced reception overlooking Newport Bay while indulging in exclusive auction items. The event will include a delicious brunch and touching personal stories from those affected by Multiple Sclerosis. Jodi Most, Bubbles & Brunch Committee Member and long-time supporter of the Society, believes “this brunch is the perfect opportunity for women in Orange County who care about MS to gather for an elegant affair that furthers our cause. Who isn’t having a good time with a glass of champagne inhand, bidding on luxury items, meeting likeminded ladies, all while enjoying a spectacular harbor setting?”
This inspirational morning supports the Society’s mission and creates connections amongst those who care deeply about this cause. Don’t miss out on this incredible new event!
Seats are limited. Purchase your tickets now for this intimate gathering of ladies connecting for a cure at connectingforacure.org.
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 July
12:
Fountain Valley MS Clinic Research Symposium
August 2-3: 16: 23:
Bike MS Go Big or Go Home, Kona, Hawaii Moving Forward: Program for the Newly Diagnosed Bubbles & Brunch to End MS
September 5-7:
Challenge Walk MS
October
18-19: Bike MS Bay to Bay Tour Visit http://calendar.MSpacific.org to view upcoming events and register to attend!
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. Contact Erich Foeckler at 760-448-8412 or erich.foeckler@nmss.org to join today!