Summer 2015
Northern California Chapter
MS Connection Newsletter
INSIDE 04 THIS ISSUE
research
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programs & services
New research in northern california
golden circle
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MS connection: Summer 2015
letter from the president
a world free of ms
The Society’s promise around research is clear: stop disease progression, restore what’s been lost, and end ms forever. addressing the challenges of everyone affected by ms requires a similar focus and promise.
Connect with us online: www.nationalMSsociety.org/CAN Like us: facebook.com/MSnortherncal
It is hard to believe that 2015 is already halfway over. We completed another successful season of Walk MS, with 13 events throughout Northern California. This year we set our fundraising goal at $1.6 million and we are excited to say that we have met this goal! My sincere gratitude goes out to everyone who participated in a walk and donated time and/or money. Because of you, we are able to continue providing life-changing programs and services to the 12,500 individuals living with MS in Northern California. Your contributions also help fund groundbreaking research and clinical trials. BalanceWear (page 7) is just one example of a treatment that was funded by the National MS Society and is currently being prescribed to patients with MS and other diseases with similar symptoms. Research is being funded constantly, and some examples of studies that are currently underway are on page 4. Although Walk MS 2015 is over, there are still plenty of ways to connect and make an impact. Cycle across the beautiful California landscape during Bike MS: Waves to Wine in September, get down and dirty at Muckfest MS in October, attend a DIY event near you, like Crush MS, or host your own DIY event! However you choose to get involved, know that your contributions to the mission are bringing us one step closer to a world free of MS. Warm regards,
Follow us: twitter.com/MSnortherncal
Janelle Del Carlo, Chapter President
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scholarships
congratulations, scholars!
The Northern California Chapter has announced this year’s recipients of its annual Scholarship Program: Annika Ariel from Santa Rosa, Shannon Lessard from Livermore, and Diana Nielsen from Gonzales. Annika Ariel Stanford University | Social Justice Serving as the primary caregiver to her mother, who lives with MS, has inspired Annika to pursue a degree that will help her change the world for people with disabilities. Shannon Lessard University of Portland | Nursing Shannon was diagnosed with MS in 2008. Her desire to pursue a nursing degree focusd on pediatrics stems from her challenges with her own diagnosis and desire to help others with similar experiences.
National Multiple Sclerosis Society Northern California Chapter 1700 Owens Street, Suite 190 San Francisco, CA 94158 1-800-344-4867 Chair: Jay Thayer Chapter President: Janelle Del Carlo Editor: Emily Hazlett Designer: Nare Ovsepian Copywriter: Jenna Tucker © 2015 National MS Society, Northern California Chapter; Published Quarterly—Summer 2015
Diana Nielsen UCLA | Biochemistry Diana’s father lives with MS and understands first-hand the challenges that occur when a family member lives with the disease. Diana hopes to study medicine and one day revolutionize the way people think about and interact with their health practitioners. This year, more than $1.2 million in awards were presented to individuals who live with MS or have a parent who does. MS shouldn’t stand in the way of an education, and the National MS Society’s scholarship program gives students an opportunity to pursue their educational goals. Information about scholarships for 2016-2017 will be available on October 1, 2015. n 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 2015
research
Understanding progressive MS In a recent issue of Lancet Neurology, top researchers and patient advocates review the latest research on progressive multiple sclerosis, outlining recent advances and urging the MS research community to focus on finding solutions for people who are affected by this form of the disease. Following are highlights from these papers:
What causes progression? Drs. Don Mahad (University of Edinburgh), Bruce Trapp (Cleveland Clinic) and Hans Lassmann (Medical University of Vienna) review an ever-increasing understanding of the kind of nervous system damage that leads to progressive disability in people with MS. These include oxidative injury (a process wherein “free radicals,� normal byproducts of bodily processes, cause nerve tissue injury) and injury to the mitochondria (energy-producing bodies within nerve cells). These injuries, generally thought to be launched by MS attacks, are then amplified by age-related changes in brain activation. As much progress as has been made, however, there is a need for laboratory models that truly represent the chronic stages of injury in MS to move this research forward.
How to treat symptoms? Drs. Anthony Feinstein (University of Toronto), Jenny Freeman (Plymouth University) and
Albert Lo (Brown University) review clinical trials of treatments or rehabilitation focusing on MS symptoms. Their main finding is that too few studies involve people with progressive MS only, and that more studies are sorely needed to determine effectiveness in this population. Research on treatments for symptoms also takes on greater significance in the absence of diseasemodifying therapies for progressive stages of MS. The authors suggest that testing several interventions at once may launch research in this area forward.
Lessons learned Drs. Daniel Ontaneda (Cleveland Clinic), Robert Fox (Cleveland Clinic), and Jeremy Chataway (Queen Square, University College London) review the frustrating history of negative results from phase III treatment trials in people with progressive MS. Their comprehensive review offers lessons learned and concrete strategies for turning these lessons to positive outcomes. These include the need for better clinical measures of effectiveness, including cognitive testing and patient-reported outcomes; recommendations for better trial designs and conducting trials for at least 36 months; and using advanced
nationalmssociety.org/can | 1-800-344-4867
To learn more about the Progressive MS Alliance, visit www.progressiveMSalliange.org imaging tools and spinal fluid biomarkers to track treatment benefits.
Overcoming barriers Dr. Timothy Coetzee (National MS Society), Dr. Paola Zaratin (Italian MS Foundation) and MS blogger Trevis Gleason comment that increased focus is necessary in three areas: research collaboration; regulatory innovations (regulatory authorities have less experience with progressive forms of MS and may expect trials that are too onerous to perform); and sustained and increased research funding. The launch of the international Progressive MS Alliance, which just released its second request for research proposals to foster international collaboration, bodes well for better progress toward these goals.
A much-needed focus Dr. Alan Thompson (University College London) states, “Every time a new treatment for relapsing-remitting MS comes on the market, it serves to remind people with progressive MS that they are still waiting.� Dr. Thompson says that the most fundamental issue in developing new treatments is the need
05 to understand the events that lead to the development of progressive MS. A close second is the need for innovative trial design. He also encourages new approaches to rehabilitation. He notes that the Progressive MS Alliance, for which he serves as Chair of the Scientific Steering Committee, is focusing on this daunting challenge with a mission to develop effective treatments and symptom management. The series of articles point to some significant progress made in addressing the challenges of progressive MS. However, it also points to the urgent need to solve these challenges. The Progressive MS Alliance is putting the framework and funding in place to help drive this research forward, with the sole objective of improving the lives of people with progressive MS. n
Is there a link between gut bacteria and MS progression? Headed by lead investigator Sergio Baranzini, PhD (UCSF), the MS Microbiome Consortium received a new collaborative MS research award this spring. The consortium will use a comprehensive analysis of gut bacteria in people with MS to determine factors that may drive progression and develop probiotic strategies for stopping progression. The MS Microbiome Consortium was created in 2013 by investigators with world-class expertise in genomics, clinical care and research, microbiology, and neuroscience.
06 Living with ms
Love lessons
Strengthen your commitment to each other and help keep your love strong with the insight and wisdom of couples who have met the challenges of multiple sclerosis with grace, courage and devotion. • Participate in entertaining discussions and activities aimed
at enriching your relationship • Learn new ways to communicate effectively and connect more meaningfully with your partner • Meet other couples who are also living with multiple sclerosis • Enjoy a fabulous selection of boutique wines from the Napa Valley, along with delicious appetizers and desserts! Presented by Ronda Giangreco, author of A Dose of Devotion: How Couples Living With Multiple Sclerosis Keep Their Love Strong
MS connection: Summer 2015
Tuesday, July 14th 6:30pm - 8:30pm Ed Roberts Campus 3075 Adeline St, Berkeley Wednesday, August 12th 6:30pm - 8:30pm Mercy MS Achievement Center 7777 Greenback Ln, Suite 108, Citrus Heights Tuesday, August 18th 6:30pm - 8:30pm National MS Society Office 2589 Scott Blvd, Santa Clara Thursday, September 24h 6:30pm - 8:30pm Finley Community Center 2060 W. College Ave, Santa Rosa
8 Hours to a Lifetime of Satisfaction Saturday & Sunday, August 29th - August 30th | Murphys Suites, 134 Highway 4, Murphys
Having a healthy relationship is hard work even in the best of times. MS can make it even harder. This program can help you strengthen your partnership and minimize the impact of MS on your life. The workshop is open to any couple in a committed relationship, regardless of marital status. Through interactive group activities, you’ll learn and apply skills to deal with common relationship challenges. This overnight destination weekend includes your overnight hotel stay on Saturday night. Cost is $75 per couple. What will we learn? - To address communication and problem solving issues all couples may face - To look specifically at how MS can impact communication in a relationship, - Strategies couples use to address challenges
To register for these programs, visit www.nationalMSsociety.org/can or call 800-344-4867.
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nationalmssociety.org/can | 1-800-344-4867
research happening in northern california
a balancing act
It’s no secret that MS affects movement. Messages between the brain and body get interrupted and can cause symptoms like vertigo, faintness, and gait problems. But a new, non-invasive treatment for balance issues has recently started to make headway. For many, this innovative therapy has immediately improved balance and continues to do so overtime. It might seem too good to be true, but for many, BalanceWear (BW) has been a life changer.
Many clinicians across the United States have added BalanceWear to their treatment options for people with MS and other degenerative diseases. Andrew Lesher is a physical therapist in private practice in Philadephia who has prescribed BalanceWear to hundreds of patients and has seen amazing results. For example, one patient was able to increase his ability to sit unsupported, going from 5 seconds to 40 minutes thanks to his continued use of BalanceWear.
While treating a patient in 2001, Cindy Gibson-Horn PT discovered that strategically placed weights helped to ameliorate balance problems, ultimately improving mobility. Shortly after, Cindy, Dr. Gail Widener of Samuel Merritt University, and Dr. Diane Allen at San Francisco State University began a line of research originally funded by the California Physical Therapy Association and Samuel Merritt University. As research continued, so did funding with money coming in from the National MS Society and a grant awarded by the National Institutes of Health (NIH). The research resulted in an evaluation assessment called Balance-Based Torso-Weighting® (BBTW).
Mr. Lesher’s recommendation for BalanceWear does not just come from a medical practioner’s viewpoint. While he has been prescribing the treatment for two years, he has also been using it to manage his own MS symptoms for over three years. During a conference, Mr. Lesher attended a continuing education session being led by Gibson-Horn. After the class, he was fitted with an evaluation BalanceWear vest, and while it was on he was able to walk without the assistance of his cane.
This assessment allows clinicians to see if BalanceWear is a viable option for someone. If improvement is seen, the patient is then fitted for their own customized BalanceWear vest, where weights are placed according to specific directional balance losses.
“Before I met Cindy, I had to stop playing basketball because I just wasn’t safe,” Mr. Lesher said. “Now I can play again, even though my symptoms with MS have gotten worse. My 14 year old son won’t let me step on a court without my vest. It’s incredible that a product like this exists and has given me a part of my life back that I thought was gone forever.”
(continued on next page)
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MS connection: Summer 2015
Another BalanceWear patient who has seen improvement is Mary Spencer. She was one of the first MS patients to try out the vest. She said, “I thought it would be heavy, but it feels good. I am stabilized. It makes a huge difference for me and I can actually get up and move!” She wears her BalanceWear mostly on what she calls her “bad days” and during fitness classes.
Left to right: Cindy GibsonHorn & Mary Spencer
While results are not the same for everyone, BalanceWear continues to improve the quality of life for many people living with MS. For more information on BalanceWear, including the published research, and a list of clinicians in your area that offer the therapy, visit www.motiontherapeutics.com. n
listen & learn Gender differences in MS
Tuesday, July 21, 4:00pm PST Thursday, July 23, 7:00pm PST MS affects men and women differently. Join Dr. Barbara Giesser and Dr. Rhonda Voskuhl of UCLA for a one hour conference to learn some of the ways that MS varies among each gender, as well as why these differences occur and why they are important.
preparing for ms doctor visits
Tuesday, September 15, 4:00pm PST Thursday, September 17, 7:00pm PST It is important to make the most of your visits with your doctor. In this teleconference, Kathy Costello, MSCN, Associate Vice President of Clinical Care, National MS Society offers tips to help you prepare for upcoming appointments. Learn how to make your visits more successful and how to build a true partnership with your provider. RSVP today at www.nationalMSsociety.org/ telelearning or call 800-344-4867.
Muckfest MS San Francisco saturday, october 10, 2015
register today: muckfestms.org
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nationalmssociety.org/can | 1-800-344-4867
Walk MS
Walking from coast to coast by Jarrod & Justin Scalzo
This year marks the 20th anniversary that our mother, Bilinda Kranich Scalzo, passed away after a long battle with multiple sclerosis and the complications accrued. She was diagnosed at 19 years old, but was determined to live her life and most importantly, create a family in her hometown of Hamden, CT. She met our father, John, in high school and they married soon after. Together, they had four children – Marissa, Jason, Jarrod, and Justin.
Left to right: Justin, Marissa, Jason, & Jarrod walk MS raised over
and has raised more than
in northern california, surpassing our goal!
to date nationwide
$1,617,588
$36 million
highest fundraising nvididual perry ann jeveli
$106,409
It is easy to mourn the loss of a mother, especially having lost her at such young ages -- we were 11 and 6 respectively -- but we truly believe she is not really gone. We feel her presence all around us. We sense her love through our father and see her spirit in our nephew, Tyler, and nieces, Emma and Avery. As a family, we want to celebrate her life and honor the gifts of love, people, and opportunity that we credit largely to her influence. To honor her legacy, we are participating in events from coast-tocoast including Walk MS in San Francisco and Boston, as well as the MS Motorcycle Ride in Connecticut. Since deciding to participate in Walk MS 2015, we have connected with many people living with MS today. We would not be our mother’s sons if we did not dedicate our walk to their honor as well. We walk for them, we walk for her, and we walk to celebrate life. n
walk ms: NOrthern California 7,596 participants 4,440 new participants
highest fundraising team pear’s pack
$120,124
751 teams
thank you!
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MS connection: Summer 2015
bike ms
bill’s virtual ride by Bill Maciej
When I was first diagnosed with MS in 1988, my doctor told me there would be a cure within 10 years. Twenty seven years later we have disease modifying medications and therapies for some forms of MS, but still no cure. I am a quadriplegic with primary progressive MS, and little headway has been made for patients like me. However, in the last year my life has expanded a lot due to the MS Achievement Center and the Motomed
that they have there. The Motomed assists me in moving my legs and allows me to bike 8-9 miles at a time. This year, I’m virtually “riding” 175 miles from San Francisco to Sonoma for Bike MS: Waves to Wine on Team Dignity Health Neurological Institute, and I’m raising funds to support programs for those of us living with MS, as well as research to finally find the cure my doctor told me about nearly three decades ago. n
Register today for Bike MS: Waves to Wine! September 26 & 27, 2015 // 1 or 2 Days // 20 to 175 miles // San Francisco to Sonoma County At Bike MS: Waves to Wine you will begin your journey in San Francisco by crossing the Golden Gate bridge, wind along historic Highway 1 to Stinson Beach, then pedal through the scenic vineyards and farmlands of Sonoma County. Waves to Wine has all the best that Northern California offers - waves AND wine!
With route options ranging from 20 to 175 miles, Waves to Wine is appealing to a variety of fitness levels. This fully supported ride includes six meals, stocked rest stops, support vehicles, optional camping, and a festival area featuring a wine and beer garden. Participate as an individual or on a team. You can also ride “virtually” or volunteer!
register today! visit www.wavestowine.org or call 855-372-1331
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nationalmssociety.org/can | 1-800-344-4867
Golden Circle
giving back
Dean and Carmen Lauerman are the epitome of engaged and we couldn’t be more proud to have them be a part of our elite Golden Circle. The couple has been involved with the National MS Society, Northern California Chapter for more than a decade and has been a part of many aspects of the Society’s efforts. Not knowing anything about MS, Dean was surprised by his own diagnosis in 2003. These days, Dean and his wife Carmen are the ones surprising us with their incredible involvement, never-ending knowledge about MS, and generous financial contributions. After Dean’s diagnosis, the couple made a commitment. He said, “For a lot of people, once they realize they have something like MS in their lives, they want to learn more about it and then find out how they can get involved.” And so their involvement began at Challenge Walk MS in 2004 as volunteers. When they discovered the Chapter’s Bike MS: Waves to Wine, they were all in! The first year they participated, they showed such a commitment to growing the event and had so many outstanding ideas that they were elected to the Support and Gear Committee. They’ve been
highly involved in this role ever since, and Bike MS gets bigger and better every year with their support and guidance. Beyond events, the two also value the Society’s programs and services, believing that “the Society does a great job getting information out to people.” And Dean has even experienced the power of MS research first-hand during his participation in a clinical research trial. The Lauermans have been involved with the Society in so many ways. Their volunteerism has helped us grow our largest annual fundraiser and their generosity in making their own significant gifts has contributed to the organization’s success. “It’s a good thing to make giving a priority, especially when you see what that money does for research and for helping other people with MS,” said Carmen. They express that they have what they need, and the rest is just icing that can (and does) go to the Society in order to help others with MS live their best lives. “Italy’s always going to be there,” said Carmen. “That $100 bottle of wine is always going to be there…we know what it’s like to live with MS and we want to make life better for others with the disease. It makes us feel good.” n
For more information on supporting Golden Circle or to make a gift online, please contact Laura Milewski at 415.230.6678 ext. 73007.
1700 Owens Street, Suite 190 San Francisco, CA 94158
2015 summer celebration
NORCAL EQUESTRIAN CHALLENGE RIDE FOR MS 2015 October 3, 2015 Folsom Lake, Granite Bay Join us for a noncompetitive horseback riding event to raise money and awareness for MS research and programs. Each rider can choose a challenge trail for up to 25 miles with multiple route options available.
www.ec4MS.org
AUGUST 8TH | 3PM - 6PM THE REID FAMILY VINEYARD 1020 BORRETTE LAND, NAPA, CA Enjoy great wine, food, & music from dozens of Napa Valley wineries while raising funds in the fight against MS. www.crushMS.org/events