MS Connection Summer 2010

MOVING TOWARD A WORLD FREE OF MS | SUMMER 2010

INSIDE THIS ISSUE

NORTHERN CALIFORNIA CHAPTER

Chapter Update PAGE 3

Life Moves On PAGE 4

Bike MS: Waves to Wine PAGE 6

MS Research Forum PAGE 11

In March of this year, after a year of political wrangling, the U.S. Congress passed major healthcare reform subsequently signed into law by President Obama. Here is a timeline identifying when major reforms of significance to persons living with MS are expected to take effect. Implementation Timeline for Major Reforms 2010 • Individuals who are unable to obtain insurance due to a pre-existing condition such as MS will have access to high-risk pools. Provisions about increased eligibility, program expansion and rate reductions are still being worked out. • Insurance companies are prohibited from placing lifetime caps on coverage costs.

• Over time, the Medicare prescription coverage gap will be closed. This will reduce out of pocket costs until fully closed in 2010 for folks on Medicare Part D. 2011• A voluntary long-term care insurance program titled the Community Living Assistance Services and Support Act (CLASS Act), is created which provides help paying for costs that will allow people to receive services in their homes or will assist with nursing home costs. • Medicare beneficiaries in the prescription coverage gap receive a 50% discount on brand-name drugs. Additional drug discounts are being introduced to close the gap fully by

2010.

HEALTH CARE REFORM USHERS IN NEW ERA FOR PEOPLE LIVING WITH MS

continued on page 10

2 JOIN THE MOVEMENT: nationalMSsociety.org

BOARD OF TRUSTEESBoard OfficersThomas M. Galizia, Chair Deloitte ConsultingAngela E. Lai, Secretary Wells Fargo Private Client ServicesDavid Larson, Treasurer Piedmont Grocery

Board MembersLaura Black, Audit Chair Needham & CompanyC. Budd Colby Colby Biomedical ConsultantsElizabeth Crabtree-Hartman, MD UCSF MS Center, Department of NeurologyAnthony DeLizza, Program Co-Chair First Light, LLCMichelle Dennedy OracleMatt Frinzi Powervision, Inc.Douglas S. Goodin, MD UCSF MS CenterDavid R. Hultman Davidson Investment AdvisorsH. Penny Knuff Fiduciary Trust International of CaliforniaDavid MauldinDoug Richardson, Program ChairJohn A. Schafer, MD Mercy Medical GroupJohn N. Staples, III Evanston PartnersDan Stokes

JStokes & Associates

Emeritus Board MembersDavid KornFillmore MarksGary Ryness The Ryness Company

MS CONNECTION SUMMER 2010

National MS SocietyNorthern California Chapter 1700 Owens Street, Suite 190 San Francisco, CA 94158

415-230-6677 | 800-344-4867

Chairman • Thomas Galizia Newsletter Editor • Jennifer Gainza

The National Multiple Sclerosis Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The National Multiple Sclerosis Society assumes no liability for the use of contents of any product or service mentioned.

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 National Multiple Sclerosis Society is dedicated to ending the devastating effects of MS.

© 2009 National MS Society, Northern California Chapter

3TOLL FREE NUMBER 1 800 344 4867

Walk MS: 2010 was a huge success! In Northern California, we surpassed our fundraising goal and raised $1.25 million dollars. We couldn’t have done it without you.

Thank you for joining the sea of orange and being part of a powerful Walk MS community by raising funds and awareness to support the more than 20,000 people living with MS in Northern California.

Together, we are moving forward and sharing hope for a future free of multiple sclerosis. By participating in Walk MS, you have joined others that care about people affected by MS - a community coming together for a shared goal.

The $1.25 million dollars raised will help

people affected by MS by funding cutting edge research, driving change through advocacy, facilitating professional education, and providing programs and services designed to help people with MS and their families move their lives forward.

Now that you’re done strolling, it’s time to get rolling! Bike MS: Waves to Wine Ride 2010 will take place on September 25th & 26th. Sign up today to volunteer or ride.

We couldn’t do it without you. Our heartfelt appreciation and gratitude goes out to everyone who

joined the movement. Thank you for helping to create a world free of MS!

With great appreciation,

The Northern California Chapter

NORTHERN CALIFORNIA CHAPTER UPDATE

WE WALK TO CREATE A WORLD FREE OF MS!


LIVING WITH MS

No MSer plan on getting this disease. Our doc looks at us, usually with a serious expression, and tells us we have MS. We immediately think of the horrible disabilities wrecking our bodies. It’s terrifying, especially for those of us that previously were completely healthy. But I’m here to tell you a few secrets that helped me to cope. Let me start at the beginning. Years ago, I worked as an Emergency Helicopter Flight Nurse. The work was challenging, exciting, and for us trauma junkies, fun. My personality lends to this kind of work-a stubborn overachiever that rarely listens to directions. I loved the fast paced world of the sickest of the sick. But there is a down side. We are witness to all sorts of horrible tragedies, and it’s hard to push those images away when we go home. One of the suggestions crisis managers advise is writing a journal. Some of the flights, especially the pediatric nightmares, were eating me alive. When the words were written, somehow the emotional pain lost its grip. Over ten years, I continued to write, sometimes about the ridiculous stuff, and was able to pour my heart out. Much to my surprise, my silly journal was published in 2001. We called it “Trauma Junkie: Memoirs of an Emergency Flight Nurse”, and it began to sell very well. Several months after the book was published, I found The Lump. As in a breast cancer lump. The entire PR campaign came to a screeching halt to be replaced with surgery, chemotherapy and treatments for my

cancer. But the book, despite losing its initial momentum, continued to sell well in the EMS world. Fast forward to 2007. I had left flight nursing to go to graduate school to become a nurse anesthetist. Anesthesia is an demanding career, and I loved it as much as flight nursing. In 2007 some weird symptoms began to appear. Out of nowhere, my arms would become very heavy for no reason. It lasted several minutes, and then disappear. I noticed one of my legs started twitching for no reason. Because of my medical background, the only thing I could come up with was a metastatic tumor to my brain, which is a lethal diagnosis. I knew what it meant, and I didn’t want to start that train. One night, as I was waking up a patient from a very long surgery, my arms suddenly couldn’t move. Having episodes of weakness was one thing, but this was different. If she hadn’t woken up smoothly, I could have jeopardized her life. An MRI quickly followed. I ran upstairs to look at the images- no golf ball tumor. I was sent to a neurologist, and within two months, I had a firm diagnosis of MS. When the symptoms didn’t abate in six months (and a few more were added), I got hit the big casino. Primary Progressive MS, right out of the chute. At first, like all of us, I was stunned. My mind took me to all sorts of terrible places, with images of being bound to a wheelchair, or

LIFE MOVES ON “TRAUMA JUNKIE: MEMOIRS OF AN EMERGENCY FLIGHT NURSE”

BY JANICE HUDSON

worse, bed. I thought of end stage MSers struggling to sit up, or even talk. I was determined to fight it, do whatever I could to slow down the progress of my disease. I joined our local MS support group which helped me laugh. We have the perfect excuse for all sorts of things- forgetting birthdays, appointments and the like. When something scary happens, they are there to listen, understand, and tell their stories. “Yea, well, I remember the time I fell at the grocery store- they thought I was drunk and almost called the police”, sort of stuff. Again, we could laugh at ourselves, and I knew I wasn’t alone. While I struggled with acceptance I remembered- if I take my fears, anger and frustration and put them on paper, all those emotions becomes less and less powerful. Thus, another journal began. It started with my worst fears, similar to my trauma journal. As I wrote, I became stronger and stronger. Writing is incredibly powerful. More importantly, it takes away the MonSter’s dominance. He may be there, but I refuse to let him define my life. Through writing, my husband, spirituality, MS group, horse, friends and family, I have found peace. I work daily to keep my body and mind healthy. My physical therapist, Brandy, (who has become a good friend away from work), has developed my program to keep me healthy, strong, limber and balanced. Horseback riding has always been my passion, and prior to the MonSter, I actively showed and trained in dressage. I no longer show, but riding is part of my physical and mental therapy. MS is the antithesis of who and what I am- a stubborn overachiever who doesn’t listen to directions.

The MonSter lives in me, but he will not take the essence of ME away. Life gives us lots of wonderful surprises. Last fall, I called my publisher to order more of my books. An uninterested clerk informed me they had sold out. Less than an hour later, Lionel Koffler, president of Firefly Books, called me. They thought I had died from breast cancer, and wanted to do a new version of my book. Long story short, a new and revised version of “Trauma Junkie: Memoirs of an Emergency Flight Nurse” is hitting the shelves this month. It just goes to show that writing can bring us peace. And sometimes wonderful things.

- Janice Hudson, April 2010 “Trauma Junkie: Memoirs of an Emergency Flight Nurse” is available now on Amazon.com

Author Janice Hudson

LIVING WITH MS



TEAM GREEN RIDES AGAIN!27th Annual Bike MS Waves to Wine Ride Strives to Raise $2 Million

ACCEPT THE CHALLENGEAN UNFORGETTABLE RIDE. AN UNBEATABLE DESTINATION. A WORLD FREE OF MS.

September 25 & 26 1 or 2 day options from 40 to 175 miles Register at: wavestowine.org or 800-344-4867

An unforgettable two-day journey from San Francisco via Highway 1 into Healdsburg. Enjoy six full meals, generous amenities, stocked rest stops every 12 to 15 miles, SAG vehicles, spirited festivities, a wine & beer garden, massage tent, and more. Volunteers are also needed - to learn more, please visit the website.

BIKE MS 2010

2010 will be the second year that Terry Barnacal and his team, Team Green, will participate in Bike MS: Waves to Wine Ride. Team Green was started two years ago when Terry and his wife stumbled upon the Waves to Wine website after dealing with the post-holiday blues. Looking for a way to get active, they decided Waves to Wine would be the perfect activity to start training for. At first, participating in Waves to Wine was purely an athletic challenge. Upon learning that the event

benefitted MS, Terry formed Team Green, inspired by a close family friend who is living with the disease. Terry started sharing with people that he was riding in Waves to Wine and slowly learned how many people in his life are affected by MS. Raising money to support people living with MS and helping them move their lives forward soon became the bigger cause for Terry and Team Green to focus on. Last year, Team Green had four team members and this year Terry is trying to grow the team. Look for Team Green at Bike MS: Waves to Wine this September and cheer them on!

Team Green


WALK MS 2010

CONGRATULATIONS TO COURTNEY WILLIAMS AND ALISON CAIN!

The day Alison Cain met Courtney Williams, she said “That’s the man I’m going to marry.” On Sunday April 25, 2010, Courtney and Alison participated in Walk MS: San Francisco and it was at the Walk MS event that Courtney proposed to Alison. The couple has been dating for 6 years. Courtney and Alison walked along Crissy Field with 1200 other Walk MS San Francisco participants. They made a quick stop for coffee at the Warming Hut and it was then that

Courtney proposed. Upon returning from the walk, Courtney and Alison’s friends and family were waiting with tears and hugs and the event’s live entertainment, Nkechi, was singing a song just for the newly engaged couple. “The engagement was even more magical because we were able to share it with our family and friends,” said Alison. Courtney was diagnosed with MS in March 2007 and that year he and Alison participated in Walk MS for the first time. In 2008, Courtney formed Team CW and every year since, the team has grown. The 2010 Team CW had the biggest turnout so far, with 14 team members walking to support Courtney. Courtney and Susan McCarty, Alison’s mom, are two of Walk MS: San Francisco’s top fundraisers. “Many people ask if I am nervous about Courtney having MS and how that can impact our relationship now and well into the future,” said Alison. “Courtney was diagnosed in his thirties, about 3 years after we started dating, and we continue to live our relationship as we always have. Courtney walks and rides his bike down the Embarcadero with our spoiled Boston Terrier, Izzie, and we always go to Crissy Field - it is a very special place for us, so the proposal and walk at Crissy Field was perfect.” Walk MS is the rallying point of the MS movement, a community coming together to raise funds and celebrate hope for the future. Courtney and Alison certainly have a lot to celebrate.


WALK MS 2010 WAS A HUGE SUCCESS! WE COULDN’T HAVE DONE IT WITHOUT YOU!

WALK MS 2010

Thank You To Our Sponsors

A BIG THANK YOU TO OUR TOP 100 FUNDRAISERS FOR WALK MS 2010!


1 Janine Vanier 73,862.00$ 51 Kristine Demafeliz 2,795.00$2 Perry Ann Jeveli 32,418.31$ 52 Rachel Matalon 2,768.00$3 Linda Pfeiffer 17,165.00$ 53 Nicole Mueller 2,691.00$4 Steve Apperson 12,150.00$ 54 Teresa Richardson 2,625.00$5 Sarah Donato 9,715.00$ 55 Harry Pollak 2,600.00$6 Lanier Coles 9,450.00$ 56 Pam Hardy 2,590.00$7 Mindy Zuckerman 7,775.00$ 57 Vicki Mastbaum 2,568.00$8 Diana Opela-Postma 7,510.00$ 58 Farrah Sunderji 2,535.00$9 Kim Mcilnay 6,170.00$ 59 Peter Westenhiser 2,525.00$

10 Susannah Meade 5,765.00$ 60 Diane Dodd 2,490.00$11 Shauna Silva 5,640.00$ 61 Molly Stampher 2,445.00$12 Stacy Datz 5,370.00$ 62 Melody Onwiler 2,440.00$13 Brian Garber 5,235.00$ 63 Carolyn Meehan 2,425.00$14 Steve Schlosser 4,985.00$ 64 Stephen MacGovern 2,425.00$15 Navid Mansourian 4,690.00$ 65 Steve Mendez 2,415.00$16 Matthew Zises 4,685.00$ 66 Laura Bowen 2,330.00$17 Marci Biagi 4,635.00$ 67 Kathy Finney 2,320.00$18 Shannon Griswold 4,546.10$ 68 Nicole Tscherneff 2,273.00$19 Pauline Stavaris 4,442.00$ 69 Eli Morowitz 2,240.00$20 Janice Ertola 4,340.00$ 70 Jenni Phipps 2,239.00$21 Carol Laucella 4,337.00$ 71 Marissa Zankich 2,235.00$22 Monica Kirkorian 4,295.00$ 72 Michael Feller 2,225.00$23 Lorri Peterson 4,134.80$ 73 Casey McCormick 2,200.00$24 Regina Miller 4,113.10$ 74 Cristina Tapia 2,200.00$25 Sheryl Turner 4,020.00$ 75 Michele Kanis 2,200.00$26 Kim Kramer 3,992.00$ 76 Sarah Nunley 2,200.00$27 Lisa Wisniewski 3,827.62$ 77 Maureen O'Connell 2,185.00$28 Ruth Yoder 3,660.00$ 78 Elisabeth Alejandre 2,104.00$29 Jaime Kemmer 3,575.00$ 79 Kim Langenbach 2,100.00$30 Indu Garga 3,501.00$ 80 Marilyn Handis 2,080.00$31 Judie Block 3,454.00$ 81 Maria Eansor 2,055.00$32 Jon Landa 3,443.00$ 82 Melody Baugh 2,050.00$33 Judith Nitchie 3,435.00$ 83 Leslie Borges 2,040.00$34 Elizabeth Quinn 3,400.00$ 84 Magen Harris 2,000.00$35 Mark Warren 3,215.00$ 85 Trenton Temple 2,000.00$36 Peter Gaeckle 3,200.00$ 86 Natalie Gebhart 1,985.00$37 Gretchen Kimmel 3,170.00$ 87 Lilia Rosenheimer 1,970.00$38 Abbe Funk 3,150.00$ 88 Roberta Allen 1,930.00$39 Helen Schultz 3,095.00$ 89 Michael Gottwald 1,891.00$40 Janice Herrmann 3,063.00$ 90 David Kasten 1,875.00$41 Matthew Frinzi 3,050.00$ 91 Valerie Raszka 1,873.00$42 Eileen Paul 3,050.00$ 92 Marlene Raderman 1,860.95$43 Susan McCarty 3,025.00$ 93 Jan Fisher 1,845.00$44 Hallie Sweetwater 3,005.00$ 94 John Mattos 1,835.00$45 Derek McDonough 2,970.00$ 95 Pt Nieberding 1,830.00$46 Eric Richard 2,956.00$ 96 Stacy Engle 1,820.00$47 Jennifer Dellegrazie 2,950.00$ 97 Janet Siegel 1,816.00$48 Jeannie MacDonald 2,896.00$ 98 Courtney Williams 1,815.00$49 Douglas Richardson 2,875.00$ 99 Robert Decottignies 1,800.00$50 John Lane 2,805.00$ 100 Jennifer Kelly 1,764.50$

HEALTHCARE REFORM

HEALTHCARE REFORM - continued from front page 2012• Nonprofit insurance co-ops are created that will compete with commercial insurers. • The Medicaid Community First Choice Option will give California the option to allow people with disabilities who are eligible for institutional care the opportunity to choose community-based services if they prefer.

2014• Insurance companies can no longer deny any person coverage because of pre-existing conditions, place caps on the amount they will spend on annual coverage costs or refuse to renew a person’s policy due to an individual’s health status. • Limits become effective on the ability of insurance companies to charge higher rates due to health status or gender.

• States will create health insurance exchanges which will provide a way for person to buy more affordable coverage. These exchanges will allow people to comparison shop for standardized health packages, and will give tax credits to help people afford coverage.

If you would like to learn more about the new health care reform laws, you can contact your member of Congress. And, please know, we here at the National MS Society are here to answer any questions you may have as well. We will be providing updates about the reforms as they are made available so that you may be able to prioritize your needs and eventually

learn more about healthcare reform and how it effects people living with MS.

HEALTHCARE REFORM


Every person touched by MS has a different story; whether you are a person with multiple sclerosis, family member, friend or volunteer for the cause, every story counts.

The Northern California Chapter is gathering personal stories from people living with MS and their families. These stories can be used for advocacy, legislation, marketing and more.

Examples of stories include:

• personal successes • difficulty obtaining/keeping health

insurance coverage• obtaining affordable heath

services, durable medical equipment

• increase in prescription drug costs• overcoming personal hardships

Please send your stories to [email protected]

Share your story

TIMOTHY WEST, MD SELECTED AS NATIONAL MS SOCIETY CLINICAL FELLOW

Timothy West, MD was selected as a 2010-2011 National MS Society Clinical Care Fellow in Multiple Sclerosis. The award is being supported by a generous donation from the Allene and Weyman Johnson, Sr. Fellowship Fund. The National Multiple Sclerosis Society offers a one year, post-residency MS clinical fellowship program designed to train board eligible/certified neurologists or physiatrists in specialized MS clinical care. Consistent with its mission to move toward a world free of multiple sclerosis, the Society supports the professional development and training of physicians in the comprehensive care of people with MS. This program provides the fellows with the opportunity to perform new patient consultations and follow-up evaluations under the supervision of an MS specialist physician. The fellows will also participate in multidisciplinary team activities, lectures, and professional meetings, leading to the acquisition of skills and knowledge necessary to provide the highest quality of care for individuals with MS.

CALIFORNIA MS RESEARCH FORUM

The Northern California, Pacific South Coast & Southern California chapters hosted 65 local research grantees at the first California MS Research Forum, held March 5-6 at the Hyatt Regency in Newport Beach, CA. The goal of the event was to bring together locally funded MS scientists from various institutes throughout California to share ideas and information in the hopes of accelerating MS research toward a cure. 20 scientists shared exciting data right from their labs and collaborations were formed. “We, as members of the California chapters of the National MS Society, are so thrilled with the outcome of the California MS Research Forum,” said Crystal Anglen, PhD, Research Advocate for the Northern California Chapter. “The feedback that was received from the researchers was overwhelmingly supportive and positive, and most felt that the Forum was highly conducive to fostering collaborations with other nearby researchers. This is incredibly important as the exchange of research methods and findings is key to untangling a complex disease like MS, and it’s exciting because these research collaborations could easily speed the development of a new disease-modifying therapy or even hasten the search for a cure for MS. I’m pleased to say that the inaugural event was so successful that the next CA MS Research Forum is already in the planning stages for 2011.”


NEWS

LIVING WITH MS

EVERYONE CAN JOIN WALK MS AND BIKE MSBY MARCELLA DURANDYou’ve got a wedding the same day? You don’t own a bike? Your MS makes it impossible to walk more than a block? You can still participate, even if you aren’t there in person. People with MS across the nation have found a variety of ways to take part in Bike MS or Walk MS events. “Virtual” riders and walkers often do everything a Bike MS or Walk MS participant does, without actually riding or walking. They may create a team, raise money and even earn fundraising prizes. They walk in their own neighborhood on a day that works for them. They ride an exercise bike in their own home to log the same 150 miles as a Bike MS rider, but at their own pace. Still others volunteer at an event—there are plenty of things that need doing, such as handing out snacks, water and medals, and cheering on riders and walkers. To register or learn more: Call us at 1-800-344-4867 to find out what virtual events we offer or visit www.MSconnection.org

Marcella Durand is an associate editor at Momentum, the national magazine.

THE NATIONAL MS SOCIETY IS ON FACEBOOK

Want more contact with other people living with MS? The National MS Society is on Facebook (where you’ll find discussion threads, links and more). Go to facebook.com/MSnortherncal.

Living in a facility is no barrier

For the last six years, residents at Quality Living, Inc., in Omaha, Neb., have conducted their own MS event by walking around the QLI campus on routes suited to their level of ability. “Some routes are shorter than others and we provide assistance for those who need it,” Campus Leader Mashanda Graham said. “No one feels left out.”

Friends and family come out for this event, which includes a T-shirt design contest and breakfast with “the local pancake man.”

“It’s just a fun event,” Graham said. But more than that, it keeps residents involved. “It’s a way to support our residents with MS, and they enjoy it so much we keep doing it,” she added.

Walk MS participants at Quality Living, Inc., Omaha, Nebraska

bike tocreate a worldfree of MS


LIVING WITH MS


ART AND MSBY PATRICIA BOYLE

I have had MS for over 30 years though I was not diagnosed until 1984. This was before the years of MRIs and CT scans and the only way a patient was

diagnosed was by eliminating everything else.

I was hit with a series of unexplained high fevers when I was 26. Then, they went away and nothing further occurred until I got a cold. I ended up with a limp which again went away until I became pregnant (for the 4th time) with our son. I lost the feeling in my feet and was sent to a neurologist. Because I am small, 5’ 2” and about 100 lbs., the first doctor felt it was pregnancy related. When it began to get worse, I went to another neurologist and by now I had a fair idea that something serious was wrong.

This second neurologist said it may be pregnancy related but he wasn’t sure. When I asked why, he said he had seen the same thing in men. I knew this was his way of telling me something was wrong but no doctor likes giving a diagnosis for an incurable disease to a young woman when she is pregnant and there is neither a cure nor any treatment.

Over the next three years I had another miscarriage and my symptoms grew worse. My limp became permanent and I never

regained the feeling in my feet. I had seen a number of neurologists and finally went to a sports medicine doctor who was part of the San Francisco 49ers organization. He asked me to bring all the tests results I had and all my xrays. As soon as he read the results of my lumbar punctures, and saw the amount of proteins in my spinal fluid and the look of my xrays, then he told me there was no doubt that I had MS. I was 33.

As I was driving home, all I could think of was thank God I didn’t have ALS and that there was nothing wrong with my child. When I got my family together, my husband and I told them what was wrong. While everyone was devastated, we set about deciding how we would handle the situation. I decided to continue to work and not tell anyone until I could work no longer. I did tell my closest friends because I needed a core support system around me. I must say, I was not overwhelmed by the diagnosis since I did have a successful marriage, a close family and a very large circle of life-long friends.

In 1989, I had to stop working and, shortly there-after, needed a hand-controlled vehicle. In order to continue feeling useful, I began volunteering; first as a hospice caregiver and then for a family services agency for the poor of our county. I found that as long as I kept busy doing important work, MS didn’t affect my life to any great extent. It wasn’t until I could no longer drive that I realized I was going to have to do something that didn’t require leaving home on my own.

I installed a chair lift so I could get into my home. I then renovated my home so it was accessible for wheelchair access. My

LIVING WITH MS


ART AND MSCONTINUED FROM PAGE 13 kitchen and bathroom allow me to work and shower from my chair. The rest of my home is wheelchair accessible. But, the best was yet to come.

I started painting when an artist friend gave me her canvases, paints, brushes and everything else I would need to get started. I received my first commission for $1,500 and continued to paint every day.

Overall, MS has changed my life significantly but has not made my life unhappy. I now have a talent I didn’t know I had. Staying home lets me do some of the things I do best; cooking, painting, counseling other MS patients, writing, etc. No one gets through life unscathed. My cross to bear is MS but it could be so much worse. I have a happy marriage, a wonderful son, loving friends and family. I have been told I am inspirational because I live a full and happy life even with this insidious disease. I don’t know if that is true but I do know that if you wake up in the morning, you have to do something with your day.

Being disabled doesn’t mean you are unable to do extraordinary things. Many able-bodied people have incredible gifts that they never use or worse, abuse. Living from a wheelchair is as much living as standing is. I have done both. Would I prefer not to have MS? Yes. But, the life I lead today is only possible because I have MS and, in the end, it may be the best thing to ever happen to me.

*Patricia’s next art show will run December 3 - 30, 2010 at the Foster City

Gallery. To view her artwork, learn more about the artist and upcoming shows, please visit www.artbypatriciaraffertyboyle.com

ADA CELEBRATES 20 YEARS The Americans with Disabilities Act (ADA), signed into law in July 1990, promised to change the landscape for citizens with disabilities. “But the ADA’s promise will be reached only if we remain committed to full implementation,” said David Chatel, the Society’s executive vice president of Advocacy.

“We can best celebrate our progress by reaffirming our principles of equality and inclusion,” said Joyce Nelson, the National MS Society’s president and CEO.

Learn more! Visit nationalMSsociety.org/ADA.

Looking for a way to make a difference? The Helping Hands Program—a grassroots fundraising effort—needs volunteers. All you need to do is call 866-675-4787 and say that you’re interested in the Helping Hands Program and give the code name “Kit.” You will find out how to write a note to friends, loved ones and co-workers, asking them to join the MS movement by making a contribution. The movement to end MS grows with every letter mailed! And funds raised make an immediate impact in this chapter. Call today!

RESEARCH

IN MS, RELATIONSHIP MATTERS

When you know how to take charge as a couple, MS doesn’t have to rule your relationship.MS doesn’t make relationships easier, but it can make them matter even more. The Society’s amazing Relationship Matters program for couples living with MS has been making a powerful difference. As one participant put it, “After 22 years I thought we were pretty good (but) I learned a lot of new ideas.”Classes are offered in person, online and via teleconferences, so couples may choose the format that best suits their lifestyle and comfort zones. All offer interactive curricula on challenges related to MS. Registration is ongoing. Just call 1-800-344-4867 or e-mail [email protected]. Funding for this program is provided by U.S. Dept.of Health and Human Services, Administration for Children and Families, Grant: 90FE0090

WHEN THE DIAGNOSIS IS PRIMARY PROGRESSIVECall 1-800-344-4867 for your free copy of Primary Progressive Multiple Sclerosis: What You Need to Know.

In this 156-page-book, experts Dr. Jack G. Burks, Dr. Nancy J. Holland and Dr. Diana M. Schneider address symptom management, treatment options, rehabilitation, technology and adaptations, quality-of-life issues, care-partner resources and much more.

The book, jointly sponsored by the Society and the Multiple Sclerosis Association of America, comes with a companion DVD, featuring five people who are living with primary-progressive MS. Their comments also appear throughout the book, grounding the advice in real-life situations.

The book and DVD were developed following recommendations from a Society task force on the needs of people affected by this type of MS. Publication and free copies to people with primary-progressive MS have been made possible by a generous educational grant from Genentech.

For more facts and strategies, visit our online webcast series at nationalMSsociety.org/ppmsweb.

NEWLY DIAGNOSED

Photo courtesy of Christian Brown

A Relationship Matters class in action


RESEARCH

STAY INFORMED ON CCSVI

There’s been a lot in the news lately about CCSVI, a blood flow drainage abnormality in the brain and spinal cord that some studies indicate may be linked to the damage wrought by MS.

The Society is pursuing this potential MS lead by undertaking the funding of new research in CCSVI (chronic cerebrospinal venous insufficiency) in MS and has invited investigators worldwide to apply for grants on the topic. Over $2.4 million has been committed to support seven initial CCSVI grants to determine the role of CCSVI in the MS disease process. We are working with our sister MS Societies around the world to assure that our research strategies are coordinated. New CCSVI research projects are expected to begin July 1, 2010.

Track the story

To stay up-to-date on the latest developments on CCSVI research, visit nationalMSsociety.org/CCSVI.

ORAL DRUGS MAKE PROGRESS• Oral drugs for MS are getting even closer to the doctor’s office, with one, Ampyra, now available by prescription.

Here’s the scoop:

• The FDA approved Ampyra (dalfampridine, Acorda Therapeutics) in January for its ability to improve walking in people with MS. People with MS and their healthcare providers can call 888-881-1918 for information on Ampyra, including patient assistance programs and insurance coverage. (The drug is costly: wholesale price is estimated to be $1,056 for a 30-day supply.) Watch Dr. Patricia Coyle talk about what Amypra does, how it works and possible side effects at nationalMSsociety.org/ampyra.

• Gilenia (formerly called FTY720 or fingolimod) in an exciting development has been granted a priority review by the FDA. This means it could take as little as six months to determine if this will become the first oral disease-modifying drug for MS. Read the studies thus far at nationalMSsociety.org/gilenia

• With positive results in the latest studies, Cladribine, another oral disease-modifying drug, is in the process of applying for marketing approval. Visit nationalMSsociety.org/news and type “cladribine” in the search field to learn more.

Get the latest news on oral drugs sent directly to your inbox. Visit nationalMSsociety.org/signup to create a user profile and start getting the MS eNEWS!

Society leaders meet with CCSVI researcher Dr. Paulo Zamboni (second from left) at a NYU briefing chaired by Dr. Joseph Herbert (second from right).


VOLUNTEER


GOVERNMENT RELATIONS COMMITTEE PIONEER PASSES AWAY

Jerry Wolf was one of the all-time distinguished volunteers in the history of the Northern California Chapter. Prior to volunteering with the Chapter in 1987, he had distinguished himself as one of the

pioneers of the Independent Living Movement in the 1970’s. He maintained his activism on behalf of persons with disabilities until his death on February 11th of this year.

Since Jerry’s passing, a well-spring of fond remembrances has showered the Northern California Chapter and greater Bay Area’s disability community. Jerry accomplished so much while operating with a soft spoken, gentle demeanor. In 1978 Jerry spearheaded the Housing Program at the Center for Independent Living in Berkeley. Here he dealt with the formidable hurdles in placing folks with disabilities in accessible housing. Through obtaining grants and advocating for access laws Jerry and CIL made progress with this most difficult issue. Then, in the early 80’s Jerry

made his mark working with Access California where he led a project called the Tenant Access Program which issued grants to make rental property accessible to people with disabilities.

Jerry received several awards for his volunteerism with the Northern California Chapter where he led our Government Relations Committee from 1989 to 2000. Here Jerry and the committee advocated for access to public facilities and Jerry personally was a force in Oakland, Berkeley and El Cerrito in terms of securing agreements from several restaurants in complying with the Americans with Disabilities Act.

Jerry also served as a Peer Support Volunteer at the Chapter for over 15 years where he was unfailingly reliable. As Ralph Cyr, one or our current stellar peer support volunteers put it, “Jerry was genuinely caring and committed to helping others come to terms with their diagnosis. He always had a smile and a good word for others.”

In 1991, Jerry met his wife Linda while volunteering with the MS Society. They often enjoyed eating out in the very Oakland and Berkeley restaurants he helped make accessible for others. While Jerry will be remembered for his positive demeanor and kind heartedness, his legacy is a lifetime of work improving access laws and making his community accessible for persons with disabilities.

MONEY MATTERS

CONSIDERING LIFE INSURANCE? A BROKER CAN HELPBY KIM CALDERIt’s nearly impossible to qualify for disability or long-term care insurance after being diagnosed with MS. But life insurance is another matter.

Comparison shopping is a must

The premium for a person with MS will be higher, but the policies are out there. Shopping for the best, most affordable policy can be a time-consuming and complex challenge. A good insurance broker will not only do the research and educate a buyer about appropriate products, but will help with the application process and negotiations.

Licensed independent insurance brokers are professional advisors with expertise in the insurance marketplace. Some focus exclusively on one insurance company’s products and act as sales agents, or “captive” brokers, negotiating, or “brokering,” sales for that company alone. Others develop expertise in specific types of policies, or “niche markets,” for certain types of clients, such as retirees, newlyweds or even people with chronic diseases.

An “impaired risk” broker?

An impaired risk specialist is particularly knowledgeable about what is available for people with health conditions or other risk factors. Some impaired risk brokers are even considered super-specialists, as they

specialize in a few specific impairments, such as MS.

If you choose to work with a broker, select one with whom you feel comfortable and prepare to be very candid about your disease and circumstances. A good broker can help you determine if your expectations are realistic, your goals are clear and your timing is right.

Never hesitate to ask a broker for professional references, and check them out.

If someone refers you to one broker in particular, ask why. What did your referral source like about how this broker worked?

The bottom line

It is ultimately your responsibility to understand the terms of your insurance policy, and to make best use of it. Take advantage of the time when your broker is gathering your information and exploring your options to ask lots of questions.

It is not always possible to know what your final rate will be until you apply, but you do have the choice whether or not to accept or keep a life insurance policy during the “free look” period after it is issued.

Kim Calder is director of Insurance Initiatives for the Society.


WAYS TO GIVE

LET US COUNT THE WAYSThere are many ways that you can make a significant gift today or plan a gift for the future and join the movement to create a world free of MS.

Give a gift today

Give online. Set up a tribute or memorial fund to honor someone special; become a monthly sustaining donor; give a one-time gift using your credit card. Your gifts will support local and/or national programs and services and ensure that MS research continues to develop better treatments to stop the disease process. Click the “Donate” button at nationalMSsociety.org.

Mail your gift. Your check or stock gift may go to the general fund or be restricted to the research or the service program of your choice. Restrict your Golden Circle membership or campaign gift by indicating your preferences when mailing it to the Golden Circle Program Manager at this chapter. Gifts of securities are always welcome; step-by-step instructions for DTC stock transfers are available at nationalMSsociety.org/donatestock.

Plan a gift for the future

Bequests. You can create a legacy by naming the Society in your will, charitable remainder trust, charitable lead trust or living trust. Your bequest will provide important support to the Society in the future and may be exempt from federal estate taxes. For complete estate and gift planning resources visit nationalMSsociety.org, click on “Donate” and then “Planned Giving.”

Charitable gift annuity. Provide lifetime income for yourself or someone you love while supporting the Society’s mission with a charitable gift annuity. Learn how you can

contract to transfer assets to the Society in exchange for payments for life to one or two annuitants at nationalMSsociety.org/annuities.

Life insurance gifts. Designating the National MS Society as owner and beneficiary of an insurance policy is an easy way to make a gift that costs you little while creating your legacy of support to the Society.

FREE BIKE MS TRAINING

Whether you’re training for your first event or are a seasoned veteran, a training plan will help put more pizzazz in your pedaling.

Bike MS participants get a free TrainingPeaks account and a free training plan by Joe Friel, expert trainer and author of The Cyclist’s Training Bible. The plan includes:

• Expert advice and daily instruction from Joe Friel

• Maps and routes to view, share or create your own

• Nutrition tracking to monitor your diet and much more.

Go to BikeMS.org and click on “Training” for more information and to sign up.

Want to talk to a person?For more information on any of these options or additional gift opportunities, please call our national gift planning specialist Carrie Radant at 1-800-923-7727 or e-mail [email protected].


NON-PROFITORGANIZATION

U.S. POSTAGEPAID

San Francisco, CAPermit #160

Northern California Chapter1700 Owens Street, Suite 190San Francisco, CA 94158

MS Connection Summer 2010

Documents

Transcript of MS Connection Summer 2010