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Hampton Roads CHAPTER
MOVING TOWARD A WORLD FREE OF MS Spring 2011
Hampton Roads Chapter
MS Awareness Week: March 14-20, 2011 What does MS mean to you? Share your story and raise awareness! People all over the nation are coming together to raise awareness about multiple sclerosis during our sixth annual Multiple Sclerosis Awareness Week, catapulting our movement toward a world free of MS. There are so many ways for you to learn more, take action, and share your story about living with MS.
MS = lost memories
INSIDE THIS ISSUE:
“It’s hard for me to keep track of things going on in my life. I choose to face this disease with strength, dignity, and lots of sticky notes.” ~ Fotini, diagnosed in 2007
MS Awareness Week Page 4
Check out page 6 for more information about MS Awareness Week and the ways you can get involved!
Join the Movement® Create a World Free of MS.
Challenge Walk MS Page 8
Living with MS Page 12
Financial Assistance Page 19
757-490-9627 1-800-FIGHTMS Publication of the National Multiple Sclerosis Society Hampton Roads Chapter 760 Lynnhaven Parkway, Suite 201 Virginia Beach, VA 23452 Chapter Chairman Jim Dyche Chapter President Sharon L. Grossman Newsletter Editor Robyn M. Hirsch 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 of contents or any product or service mentioned. The mission of the National Multiple Sclerosis Society is to end the devastating effects of Multiple Sclerosis. If you or someone you know has MS: Studies show that early and ongoing treatment with an FDA-approved therapy can reduce future disease activity and improve quality of life for many people with multiple sclerosis. Talk to your health care professional or contact the National MS Society at www.nationalmssociety.org or 1-800-3444867 to learn about ways to help manage multiple sclerosis and about current research that may one day reveal a cure. © 2011 National Multiple Sclerosis Society, Hampton Roads Chapter 2 | JOIN THE MOVEMENT: nationalMSsociety.org
CommunitY Calendar Programs in this section are not organized by the National Multiple Sclerosis Society. Multiple Sclerosis Educational Group The Multiple Sclerosis Educational Group is your opportunity to exchange information and coping strategies and get the latest on MS research and treatment in a comfortable and confidential environment. This program is designed for multiple sclerosis patients, caregivers, and families. 4th Tuesday of the Month at 5:30 pm Neurosciences Conference Room Riverside Medical Office Building 12200 Warwick Blvd. Newport News, VA 23601 The group is offered by Riverside Center for Neurosciences and meets on an ongoing basis. For more information call (757) 875-7880.
MS Information and Encouragement Group 3rd Thursday of the Month at 7 pm* Sandbridge Community Chapel Community Center Building 3041 Sandpiper Road Virginia Beach, VA 23456 *In April, group will meet 2nd Thursday of the month. For more information, please contact Mike Finch at mikefinch747@yahoo.com or by phone at 757-721-3105 (please leave message)--email preferred.
Events
Benefitting the Hampton Roads Chapter The Hampton Roads Chapter would like to thank all who attended the Moscow Ballet’s performance of the Great Russian Nutcracker. In our second year, we hosted 150 attendees and raised $23,000! We were disappointed that the dangerous weather conditions caused us to cancel the Ruth’s Chris Pre-Show Reception. While this was a difficult decision, we believe it was in the best interest of our donors. We heard from some of our ticket holders- who decided to brave the snow-that the show was fabulous! Despite the weather, the Hampton Roads Chapter was able to spread the word and raise awareness through playbill inserts. Between two shows, nearly 1,300 people were invited to “Join the Movement®”!
Please join us in a round of applause for the sponsors who made the event possible:
Gold Sponsor: Forbidden City
Bronze Sponsor:
Atlantic Bay Mortgage Group Beach Ford Clark Nexsen Architecture and Engineering Ruth’s Chris Steak House TJ Maxx Williams Mullen
Special Thanks To: Sandler Center
TOLL FREE NUMBER 1 800 344 4867
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i
Multiple Sclerosis Awareness Week March 14-20, 2011
Share your story and raise awareness! Here are some exciting ways to get involved!! == Flag Down MS In an effort to BE BOLD the Hampton Roads Chapter would like for you to join us as we put together a visual MS = display to spread awareness about MS. We want to show everyone how many members of our community live with thief this unpredictable disease. “Multiple sclerosis has stolen too many things from me, What does 2,711 look like? TOO MANY. but it cannot take away my spirit, strength or dignity.” We will gather at Thalia Lynn Baptist Church (next to Princess Anne High School in Virginia Beach) to decorate ~ Rick, diagnosed in 1991 this prominent spot with one orange flag for everyone who lives with MS in the Hampton Roads Chapter territory. Please come on out and publicly show your support for the MS Movement. When: Monday, March 14 from 4-6 pm Location: Thalia Lynn Baptist Church 4392 Virginia Beach Boulevard Virginia Beach, VA 23462 For more information, contact Shannon Rice at the Chapter at 757-490-9627. Don’t forget to wear your orange!
== Fun Ways to Spread the Word and Raise Awareness • Invite your friends and family to become a fan of the National MS Society, Hampton Roads Chapter on Facebook or Twitter • Conduct a Facebook campaign asking your friends to dedicate their status or profile picture to the cause • Gather a group of friends outside of a prominent place and splash the area with orange pom-poms and signs announcing MS Awareness Week • ...Or think of your own creative MS Awareness activity (Don’t forget to share your great ideas with us; post your ideas on our facebook page.) 4 | JOIN THE MOVEMENT: nationalMSsociety.org
What Does MS mean to you?
MS = __________________________ == Digital Downloads http://nationalMSsociety.org/get-involved/events/MS-awareness-week/index.aspx • Use one of the MS badges as your profile picture on Facebook, MySpace and more. • Include one of our E-Mail Signature Images in all your emails leading up to and during MS Awareness Week • Do you have a web site? Download and post an MS Awareness Week web banner on your site and then forward it to everyone you know who has a website. Ask them to post the banner during MS Awareness Week. (Remember to have the URL click back to www.nationalMSsociety.org) • Use one of our MS Awareness Week wallpapers • Donate your status updates on Facebook, MySpace, and Twitter to MS Awareness Week!
MS =
== Make It Your Mission to Splash Hampton Roads with ORANGE during MS Awareness Week!!
MS = distrustful beast
• Wear our signature orange throughout the week “Every day is different with multiple sclerosis. I never know if my body • Conduct a “Wear Orange” day at your work or and mind will prevent me from living the life I want to live. I’ll never stop school rolling on.” ~ Jason, diagnosed in 2002 • Eat Orange food – pack your lunch, your kid’s lunches, your dining room table with carrots, sweet potatoes, Clementine’s, and of course oranges • Use orange fonts on your computer (don’t forget to download and use an MS Awareness Week Email Signature)
== Learn about “How to Manage Challenging MS Symptoms on the Job” Multiple sclerosis can have a significant impact on every aspect of life, including the world of work. As part of our Employment Teleconference Series, we are pleased to present you with this very important topic during MS Awareness Week. March 16 from 7-8 pm: Practical Tips for Managing Challenging MS Symptoms on the Job To register, call the Chapter at 757-490-9627 or visit our website at www.fightMS.com. TOLL FREE NUMBER 1 800 344 4867
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== Be part of bike MS, walk MS or challenge walk MS! In conjunction with MS Awareness Week, Team Week for the Bike MS, Walk MS and Challenge MS is March 13-20. We will have prizes for the teams that have the highest percentage of participant recruitment. To help you recruit, registration during Team Week for Bike MS is $30 plus accommodations (the regular registration price is $45!); for Challenge Walk MS is $30 plus accommodations (regularly $45); and of course, Walk MS is FREE! If you are interested in starting a team, please visit www.fightMS.com. The first person to register the team becomes the Team Captain. It only takes four or more people to make a team, so recruit friends to join you from your workplace, school, religious organization, or other group. You don’t have to join a team to participate in our events! You can ride or walk with a friend! And we’re always looking for volunteers! For more information, check out the enclosed brochures or call the Chapter at 757-490-9627.
WHAT WILL YOU DO TO ENGAGE, CONNECT, INSPIRE, AND RAISE AWARENESS?
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MS = skating on thin ice “When I coach my son’s hockey team, it’s hard for me to put one skate in front of the other. But, I persevere because MS won’t stop me from being a dad and taking care of my family.” ~ Eric, diagnosed in 2004
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Announcements
Walk MS Springs Forward to April! Imagine... Winter is finally over and you’re ready to get outside in the fresh air! Walk MS gives you that perfect opportunity. Join us for our 22nd Anniversary as we walk to create a world free of MS! We’re walking at two fabulous locations: Mariners’ Museum Walk in Newport News When: Saturday, April 9 Registration and check-in begin at 8 a.m. Walk Start Time: 9 a.m. We’ll begin at the museum entrance winding our way through a tree-lined trail and along Lake Maury. You’ll return to a tasty treat and spring-filled activities! Mt. Trashmore Walk in Virginia Beach When: Sunday, April 10 Registration and check-in begin at 1 p.m. Walk Start Time: 2 p.m.
World MS Day: May 25, 2011 Join the global movement. End MS! On May 25 the world unites once more in the MS movement to highlight the international affects of multiple sclerosis. Organized by the Multiple Sclerosis International Federation (MSIF), with the help of MS Societies, the focus of World MS Day is on the needs of people with multiple sclerosis, the economic impact of MS, and the urgent need for more research to eradicate the disease. We encourage all those affected by MS worldwide to think globally and act locally, coming together to take positive action in the MS movement to end the disease. Visit www.worldmsday.org for more information on World MS Day, as well as digital downloads to help spread the word.
Take a relaxing stroll around Lake Trashmore and be welcomed back with the aroma of tasty Chinese food! Thanks to Forbidden City, you’ll enjoy a Chinese Feast at the end of this walk! The funds you raise provide many programs and services to those living with MS and their families in the Hampton Roads Community. We need your help! Register today and recruit others to walk with you! Then, START FUNDRAISING! The more we raise, the more we can help our neighbors who are struggling with MS. Register at www.fightMS.com or call 757-490-9627. TOLL FREE NUMBER 1 800 344 4867
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Challenge Walk MS
Historic Williamsburg Challenge Walk MS September 10 & 11, 2011 Crowne Plaza Fort Magruder There are only 10 Challenge Walks in the entire country and the Hampton Roads Challenge Walk MS walks right down the historic Duke of Gloucester Street in Colonial Williamsburg! Challenge Walk MS is a 30-mile, 2-day walk raising essential funds for education, direct support, advocacy, and research for people living with the challenge of MS. It’s not about being athletic, it’s about showing compassion. It is truly about accomplishing in two days what many never accomplish in a lifetime, much less attempt. Join us as the Hampton Roads Chapter organizes our 3nd Annual Challenge Walk MS in the historic triangle of Williamsburg, Yorktown and Jamestown, Virginia. Our host hotel is the Crowne Plaza Williamsburg at Fort Magruder, our start location will be Surrender Field in Yorktown and our routes will be through the Yorktown battlefields and the restored area of Colonial Williamsburg - beautiful and historic venues that will draw walkers from all over the country. We need your help in a myriad of ways. continues on page 9
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Events continued from page 8
WALK You can accept the Challenge to walk and this will be the greatest adventure you will ever take! Over two days, you will walk farther than you could have imagined and have fun doing it. Folks who walk together become friends for a lifetime and achieve more than you ever thought possible all the while raising money to move us toward a world free of multiple sclerosis.
PROCURE We will be hosting hundreds of walkers from around Virginia and across the nation. The eyes of the National MS Society will be upon us and we need YOUR help to insure the very best in southern hospitality for our guests. We’ll need help in securing donations of all of the various and sundry supplies and support needed to hold such a significant event. We want welcome baskets in each room, rest stops stocked with healthy snacks, fruits, and energy drinks. We’ll need port-a-johns, route markers and other support materials. Imagine taking care of more than 300 guests for 2 days and 30 miles and you can begin to understand our needs. Perhaps you have access to or ideas about how to get the donations we need.
VOLUNTEER As with all of our Chapter events, volunteers make it happen. The Challenge Walk MS has several types of partners …. Crew Members, Super Crew Members and volunteers. Crew members make a commitment to help before, during and after the event and take a leadership role. Super-crew members are extra special - on top of their help, they also take on the challenge of raising money. Volunteers take a shift or two during the weekend – perhaps manning a rest stop or registration. Whichever you may choose, all jobs are important to the success of the event and the Chapter!
Go Vertical for MS! We’re thrilled to announce that we’re holding our first “Go Vertical for MS” Stair Climb at the Westin Town Center in Virginia Beach on September 24, 2011! The Hampton Roads Chapter is one of four chapters to coordinate a Stair Climb fundraising event. The coolest part? Participants will climb in the tallest structure between Philadelphia and Charlotte! Standing over 500 feet high, the Westin Virginia Beach Town Center is the ideal venue for this extreme contest. Climbers may use any combination of walking, running and resting to traverse 36 flights of stairs. Teams and individual participants can use the Stair Climb as a personal challenge or as a competition against other climbers or the clock. Climbers will be timed and we’ll coordinate staggered starts based on skill level and teams. “Go Vertical for MS” is a thrilling and unique fundraising event for the National Multiple Sclerosis Society that embodies the Society’s campaign to Join the Movement®. It’s an opportunity for enthusiastic and motivated stair climbers within the city of Virginia Beach and the surrounding Hampton Roads community to come together and bring us closer to a world free of MS. Online registration is now open at fightMS.com! Registration is $25 per person. Questions? Please contact Michelle Went at 757-490-9627 or by email at michelle.went@nmss.org.
Those who accept one of these Challenges believe that one long journey will ultimately shorten the road to free the world of multiple sclerosis. Won’t you? For more information and to register check out the enclosed brochure, visit our online Challenge Walk MS Headquarters at www.fightMS.com or call 757-490-9627. TOLL FREE NUMBER 1 800 344 4867
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Ways to Give
LET US COUNT THE WAYS There 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 fightMS.com. 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 Sharon Grossman at the 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 fightMS.com, 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. 10 | JOIN THE MOVEMENT: nationalMSsociety.org
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.
Want to talk to a person? For more information on any of these options or additional gift opportunities, please contact Sharon Grossman at the Chapter at 757-490-9627 or Sharon.grossman@nmss.org or our national gift planning specialist Carrie Radant at 1-800-923-7727 or e-mail her at giftplanning@nmss.org.
Advocacy
2011 Virginia Legislative Day Seven MS Activists from Hampton Roads gathered with advocacy volunteers from across Virginia on January 23-24 for the 2011 Virginia Legislative Day! Led by the four Virginia chapters of the National MS Society (Blue Ridge, Central Virginia, Hampton Roads, and National Capital), the Virginia Citizen Action Network (VA CAN), which is a collaboration of people who want to do something about MS now, represented the more than 10,000 people living with MS throughout the state. Activists arrived in Richmond for an intense day of issues training on Sunday. And then on Monday, they headed to the Capitol to share their powerful stories with legislators and to urge them to support legislation relevant to people living with MS and their families. Specific pieces of legislation included: Expanding the public procurement provision to include person with disability-owned businesses (HB 1671) Increasing the maximum amount of credit that may be allowed from the Livable Home Tax Credit from $2,000 to $5,000 and makes real estate developers eligible to receive the credit (HB 1950) Studying the impacts of cost sharing, coinsurance, and specialty tier pricing for prescription medications (HJ 579) Requiring electric utility companies to postpone termination of service to a residential customer if the customer notifies the utility that termination of eclectic service endangers the health of the customer or member of the customer’s household (SB 741) Directing the State Corporation Commission to establish limitations on the authority of electric utilities to terminate electric service to the residence of a customer who has a serious medical condition or resides with a family member with a serious medical condition (SB 1165)
In addition, MS Activists advocated for crucial budget restorations to Medicaid (environmental modifications and assistive technology, payments for home and community-based services, and respite care), as well as restoration of funding to long-term employment support services, extended employment services, personal care services after employment, and Centers for Independent Living. Furthermore, we held our second Virtual Advocacy Day so that the entire community could be involved in the MOVEMENT to access better support services for those with MS. We thank all of you who made the pledge to: • Email your representatives the same week as advocacy day to reinforce our message • Change your Facebook status during advocacy day to let everyone know what we were doing in Richmond • Update your personal blogs with information about our priority issues • Follow our Twitter account (vaMScan) for live updates If you would like to learn more about how you can be more involved in advocacy or become an MS Activist, visit the “Take Action” section of our website (www.fightMS.com) or email advocacyVA@nmss.org.
All the Hampton Roads Chapter Volunteers and Staff with Movement Ambassador and Delegate Jeion Ward TOLL FREE NUMBER 1 800 344 4867
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LIVING WITH MS
living with MS by ron hagelganz
Lisa’s record-setting lift of 132.2 pounds.
My wife, Lisa, likes to lift heavy objects. Not everyone’s cup of tea, but powerlifting is what she loves to do. In fact, in 2001, she set a world record in the World Association of Benchers and Deadlifters, the WABDL, in both bench press (with 176.2 pounds) and deadlift (319.5), where she squats to lift the weighted bar off the floor, holds it and puts it down again with good control. Then came a car accident, brain surgery, and in 2006 a diagnosis of MS. She now uses a walker to get around, but Lisa never gave up her dream of lifting again. Last year she asked her neurologist if lifting could do her any harm. He gave her the go-ahead, and we got a day pass to the local YMCA. I got her on a bench, loaded up some plates and she did it! Next I found a nice used bench with weights and brought it home so Lisa could start training again. Because of the MS, deadlifting is out, but bench press is OK, as long as she’s having a good day. She was excited that she could do it, even with her restricted walking, and very happy to be doing something she could be good at again. Then Lisa found that the WABDL has a disabled 12 | JOIN THE MOVEMENT: nationalMSsociety.org
division. That meant she could actually compete! So in March 2010, at age 55, nine years to the month after her last competition, my nervous, prayerful and very thankful wife competed in the WABDL Goodson Honda National Championships in Portland, Ore. She set a new state record in bench press with her very first lift, and continued to reset the record in her next three lifts, finishing with 132.2 pounds. The next-best state record in the disabled division is 82.5 pounds, so she’s doing really well. And you know, I think she’s just getting started! In fact, it wouldn’t surprise me to one day see her beat her pre-MS record. I know she’s prouder of just being able to lift than of any of her old records. Not bad for an ol’ gal with MS, huh?
Adaptive Sports There are many sports and competitions that have been adapted for people with disabilities. Visit nationalMSsociety.org and type “adapted sports” in the search box, or call us to learn more. Lisa and Ron Hagelganz live in Vancouver, Wash.
Support and Advertising Opportunities This space available for you or your business or company!! Help the Hampton Roads Chapter share important information about research, programs, services and events by supporting the MSConnection and/or the MS Update Newsletters. You may “sponsor” the entire issue, or take out a full, half or quarter page ad. Promote your business or honor or memorialize someone special…the opportunities are endless! Contact Robyn M. Hirsch at 757-490-9627 or robyn.hirsch@nmss.org to learn more.
Education
Learn about MS – anytime Want to Learn More?
Dr. Aaron Miller discusses Gilenya, the first FDA-approved oral therapy for MS.
Sign up at nationalMSsociety.org/ mslearnonline to receive an e-mail whenever a new webcast debuts. Educational Video Categories Include: • Basic Facts of MS • Treatments • Symptom Management • Healthy Living • Progressive MS • Research • Family Life and Relationships • Employment and Insurance • En Español In a hurry? Visit Daily Minutes. In 60 seconds you’ll get some basics on Who Gets MS, What is Myelin, What is Relapsing-Remitting MS– and more. Type Learn Online into the search box on our home page.
For 10 years, MS Learn Online has provided educational webcasts, featuring health professionals from all over North America, accessible at nationalMSsociety.org/ mslearnonline any time, day or night. A recent feature presentation is “Getting a Good Night’s Sleep with MS,” in which Rock Heyman, MD, chief of the division of Neuroimmunology and director of the MS Center, the University of Pittsburgh, explains why people with MS seem to be more prone to sleep disorders. He has some tips for dealing with the problem. Another new presentation is on Gilenya, the first oral disease-modifying therapy to be FDAThe North American approved. Aaron Miller, MD, professor of neurology at Mount Sinai and medical director at the Corinne Education Program Our annual North Goldsmith Dickinson Center for Multiple Sclerosis American Education in New York City, discusses Gilenya in two sessions Program includes a video covering how it works, who might benefit, pros, cons and potential side effects. There are more than and book focusing on an 50 other Learn Online videos available. Transcripts MS topic. The current (.pdf format) and podcasts (.mp3 audio format) are NAEP material, called available for most programs. Who? Why? How? — Searching for the Correspondents who interview the MS experts Cause of MS, includes not only have a professional background in discussions with leading broadcasting, they have MS themselves. “So what medical researchers on the causes of MS and they want to know is often what other people how these efforts may lead to treatments and with MS want to know,” said Julie Gibson, special projects consultant for the Society. even finding a cure. Call us for a copy. TOLL FREE NUMBER 1 800 344 4867
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Programs
mark your calendar! 2011 LINKS Teleconference serIES 8 Opportunities to Learn More about MS from the Comfort of Your Home The Hampton Roads Chapter is pleased to present a series of teleconferences for clients with MS and their families entitled “LINKS.” Whether you just received a diagnosis of MS or have been living with it for a long time--the goal of this series is to “link” you with information and tips on how to maintain your quality of life in the years ahead. The series is made up of eight teleconferences held Wednesday nights (7-8pm) from April 6 through May 25, 2011. Each call will be conducted using a toll-free number, so you can call from the comfort of your home. 4/6: Parenting with MS–Making a Place for MS and Keeping MS in its place! As a parent you may struggle with how to talk to your children about MS and the ways it may affect your family. This teleconference will focus on how to talk with your children in age appropriate ways about MS, as well as address managing the unpredictability of MS as a family and the strengths and skills of resilient families. Discussion will also touch on children as caregivers and the programs and services offered by the National MS Society to assist families.
4/20: Intimacy and MS When one person in a couple is affected by MS, the other person lives with it as well. To keep your relationship healthy and balanced, it’s important to make sure that both of you stay on the giving and receiving end of the relationship, in spite of whatever changes MS may bring. This teleconference will focus on how MS affects sexual function, improving intimacy in relationships, and strategies for communication about issues and ways to manage the effects of MS on sexual function.
4/13: Recreation with Changing Needs and MS Recreation and leisure activities play a vital role in physical health, psychological health, and social needs. Recreational activities lead to a better quality of life and sense of life satisfaction. Specifically for those living with MS, studies have shown that exercise, relaxation, and stress management have positive benefits. Listen to this call and learn how engaging in recreational activities can result in positive improvements in three key areas--symptom, physical and mental health management.
4/27: Vision and MS A vision problem is the first symptom of MS for many people. The sudden onset of double vision, poor contrast, eye pain, or heavy blurring is frankly terrifying-and the knowledge that vision may be compromised can make people with MS anxious about the future. This call will discuss how vision is affected by MS, as well as possible treatment options. Resources and equipment that may be used for people living with vision difficulties will also be examined.
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Programs
5/4: Driving with MS –How to Stay Behind the Wheel For many people, the ability to operate their own vehicle equals freedom. Hear from DMV Licensed Commercial Driving Training School Instructor and Certified Driver Rehabilitation Specialist John Vaughter as he discusses how to keep your driving independence despite physical changes you may be experiencing due to MS. John’s extensive experience will be able to help you navigate the world of automobile modifications and driving evaluations. 5/11: Alphabet Soup–Disability Programs and What They Mean for You Navigating the many programs and benefits out there that are often shortened to three to four letter acronyms can be challenging. Join us on this call and learn about the wage replacement programs available to individuals who are medically unable to continue working full time, and how these different programs relate to one another. This discussion will include a comparison of private programs, such as Long Term (LTD) and Short Term (STD) Disability, as well as public programs, such as Social Security Disability (SSDI) and Unemployment Compensation (UEC). 5/18: Making the Most of Your 15 Minutes with Your Neurologist Time spent with your healthcare provider is precious and there are things you can do to make sure you are maximizing the time you spend in the doctor’s office. Learn what you should do before even stepping foot into the examining room, what kinds of questions you should ask when there, and how to make sure your doctor is really hearing your concerns. You must be proactive in getting the answers and care you want.
5/25: MS Research Update Research in MS is progressing at a remarkable rate, with more potential therapies in the pipeline than at any other time in history. The National MS Society is a driving force of MS research, supporting and stimulating world-class research into ways to prevent, better treat and cure this unpredictable disease. Join us for a call on World MS Day, and learn how far we’ve come, where we’re going, and what the Society and others are doing to move toward a world free of MS. For more information or to register, visit www.fightMS.com or call 757-490-9627.
There’s a new way to connect! Your Hampton Roads Chapter is on Facebook. Search National Multiple Sclerosis Society, Hampton Roads Chapter and become a fan. Stop by to get information on upcoming events, connect with others, and share your story. Every voice counts and we need to hear yours. Through Facebook your voice will reach others that may never get the chance to learn about MS and how they can help us move closer to finding a cure. By joining, your friends will see your activity and passion for our cause. Every post you make will be seen by all of your friends increasing their awareness of the important work being done in the search for a cure.
Make a Difference. Make Your Voice Heard. Become a Fan Today!
TOLL FREE NUMBER 1 800 344 4867
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RESEARCH
The world of MS research This past October, more than 5,500 neurologists and other investigators from around the world covered almost every aspect of current MS research in some 900 scientific presentations and posters at the annual ECTRIMS (European Committee for Treatment and Research in Multiple Sclerosis) conference in Gothenberg, Sweden.
Some research highlights
In a separate session, Dr. Antonio Uccelli of the University of Genoa described attempts to stop MS progression using infusions of an individual’s own bone marrow or blood stem cells (mesenchymal cells). Dr. Uccelli is now collaborating on a study that he hopes will show that these cells are beneficial.
Restoring function
Several research teams reported progress in A newly completed two-year, phase III trial of improving quality of life and specific symptoms, teriflunomide, an oral compound that inhibits including fatigue and mobility issues, through specific immune cells, in 1,088 people with group physical therapy, and supervised aerobics, relapsing MS, found positive results. Dr. Paul yoga and resistance training classes. Another study O’Connor of the University of Toronto reported suggested that memory training can improve brain that two different doses of function. Many reports focused Two different doses of teriflunomide significantly on CCSVI (chronic cerebrospinal teriflunomide significantly reduced the rate of MS venous insufficiency), with mixed relapses by up to 31.5% reduced the rate of MS or conflicting results. Lab studies compared to placebo, identified additional molecules relapses by up to 31.5% and that the higher that may block the ability of compared to placebo, and dose reduced the risk of myelin-making cells to repair disability progression by the higher dose reduced the damage caused by MS; selectively 29.8%. It also reduced the turning them off could be useful risk of disability progression risk of new MS lesions and for encouraging myelin repair by 29.8%. reduced disease activity. in people with MS. Additional clinical trials Risk factors are under way. Dr. Trond Riise of the University of Bergen Other medications also show promise at various reviewed the growing list of factors that may trial stages. An oral compound called firategrast contribute to an individual’s susceptibility to caused a significant decrease in the rate of new developing MS, and pointed to current studies MRI-detected lesions in a six-month trial in that may lead to a better understanding of the relapsing-remitting MS. Ocrelizumab, which interactions and variations of these multiple risk targets and kills immune B cells, reduced new factors. lesions by at least 89% over placebo in a 24-week trial. For a more complete report on the conference, search “ECTRIMS” at nationalMSsociety.org.
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MONEY MATTERS
The first steps to smart money management by rEBECCA A. Clay
Financial planning is crucial for people with MS and their families: As the disease continues, expenses tend to grow which may bring difficult financial choices. Early planning can help.
Get started: Call us Begin by calling 757-490-9627 to connect with an MS Navigator™. This highly trained professional can refer you to service providers who can help you address issues like health insurance, employment and taxes.
Next: Read up One key resource the Navigator will recommend is a brochure called Adapting: Financial Planning for a Life with Multiple Sclerosis. Full of worksheets, tips, and references, the 72page publication is an overview of your financial options. The Navigator can mail you a free copy, or you can download it at nationalMSsociety. org/financialplanning.
Finally: Talk to a professional You may need more specific information, which means consulting one-on-one with a financial planning professional. Through the Society’s partnership with the Society of Financial Service Professionals (SFSP), the Financial Education Partners Program provides free personal counseling. In this program, you receive advice during a telephone session with a volunteer from SFSP’s membership. These volunteers are certified public accountants, attorneys, or other professionals.
The more honest and open you are the more your advisor can help. Sessions are completely confidential, and the volunteers are not there to sell you anything but to share their financial knowledge. Be aware that the program cannot help with crisis needs, such as foreclosure assistance. It is not a funding source and offers no programs for indigent care. The idea is to help you forge a workable plan to prevent crises from occurring in the future. While the advisor can’t serve as a long-term advisor, he or she can get you started toward whatever your financial goals might be. Rebecca A. Clay is an award-winning writer in Washington, DC. She specializes in health issues.
Free tax preparation services The IRS will help you prepare tax returns. The online Interactive Tax Assistant answers questions about deductions, eligibility for credit and more. For those who qualify, the IRS’s Volunteer Income Tax Assistance program offers free tax help by certified volunteers. Call 1-800-906-9887. For general information, go to www.irs.gov or the IRS general number, 1-800-829-1040.
TOLL FREE NUMBER 1 800 344 4867
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WAYS TO GIVE
create a fundraiser to remember Did you know there are literally thousands of ways you can help? People who want to contribute to the mission to end MS are invited to dream up and produce original events that raise money for research and care. Every year, all over the country, volunteers organize and host golf, billiards and bowling tournaments, auctions and raffles, dinners, concerts, rummage sales, wine tastings, barbecues, motorcycle fun rides, skiing days and dances. Other events include a trap and skeet fun shoot, a bratwurst and bake sale, a boat show and a car show. A sailing party in Minnesota and the 7th Annual Bell Family Rabbit Hunt in Wisconsin each raised thousands of dollars. Holiday themes are also popular, such as Easter egg hunts or Halloween parties with a pay-to-enter costume contest. The types of benefits to create are limited only by the imagination.
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“The idea is to turn someone’s passion into a fundraiser,” said Betty Ross, the Society’s associate vice president for Campaign Development. These events may raise anything from a few hundred to tens of thousands of dollars. There’s no minimum required and certainly no maximum, Ross said. And you don’t even have to create a brand-new event, she added. You can add a fundraising element to pretty much any existing occasion. How much time it takes to prepare depends on how elaborate the plans are. They can be as simple as asking friends to pay a few dollars at the door to attend a private party. On the other hand, a large-scale gala might take four to six months, or even longer, to plan. “We have a lot of cool Society events, but people have their own interests,” said Ross. “Community events reflect how you want to be involved.” Have a great idea? Call Shannon Rice at the Chapter at 757-490-9627 and ask for the Community Event Organizer Guidelines and the Community Event Information Form, or enter as a search term at nationalMSsociety.org.
help & Support
Financial Assistance Program The National MS Society is dedicated to reaching out and responding to individuals, families, and communities living with MS and to meeting them at their point of need. Among the many services and programs the Chapter provides is our Financial Assistance Program, a multi-faceted program that helps to address the specific challenges that living with MS can cause. Please note that the Chapter only provides short-term, limited, and reasonable financial assistance to individuals with MS. Financial Assistance will be considered for the following categories: General Emergency Assistance n Independent Living Needs n Home & Vehicle Modifications n Mental Health Needs n
Physical Health Needs n Wellness Programs n Durable Medical Equipment / Assistive Technology n
Those interested in learning more about the assistance that is available should contact the Chapter at 757-490-9627
Help the National MS Society With a Tax-Free Gift From Your Traditional or Roth IRA! Thanks to renewed legislation, a tax free option is available for individuals ages 70 ½ or older. Under the new law, you can use IRA funds to make charitable gifts without tax implications. If you are required to withdraw minimum distributions from your IRA and you do not need the money for personal use, consider giving part or all of it to the National MS Society simply by completing a new beneficiary designation form. Although you will not be able to claim a charitable deduction for the IRA gift, you will not pay income tax on the amount withdrawn.
You may contribute funds through the IRA gift provision through the end of 2011 if; • You are 70 ½ or older at the time of the gift. • Your IRA gifts total $100,000 or less. • You transfer the gifts outright to the National MS Society (This excludes gifts made to charitable trusts, donor advised funds, gift annuities and supporting organizations.) • Your gift is completed by the end of 2011.
Be sure to contact your tax professional, your IRA administrator and/or the Society if you are considering a gift under the new law.
For more information on how to make a gift from your IRA contact us at 800-923-7727 or visit www.nationalMSsociety.org.
TOLL FREE NUMBER 1 800 344 4867
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VOLUNTEER SPOTLIGHT
Donna Utsunomiya - An Inspiration for All
It was 1994: Tom Hanks wins Best Actor for Philadelphia; Holly Hunter wins Best Actress for The Piano and Donna Utsunomiya participates in Walk MS for the first time! She’s the team captain for INRIans- a corporate team established to support a co-worker diagnosed with MS. But Donna is more than a team captain. She is a top fundraiser! Ever since 1994, Donna has been one of our top five fundraisers for Walk MS. Back then, the Hampton Roads Chapter only had one walk site! When we added a second site in 1996 on the Peninsula, Donna and her team were thrilled since they all lived there. The INRIans made the Peninsula Walk MS location their “home turf” returning year after year, always earning team fundraising awards. Creative fundraising for MS is Donna’s passion. Year-round, she organizes yard sales with all of
the proceeds benefitting Walk MS. Originally, Donna would hold sales as she accumulated enough of her own items and averaged about $2,000 a year. However, in 2010, friends and neighbors pitched in and her yard sales raised over $5,000! One year, Donna created a cookbook to sell. She received approval from Wal-Mart to solicit customers. So, Donna dressed up in some attention-getting garb with her cookbooks on a table, informing people of MS and collecting donations. Donna is a talented knitter, too! Each year she knits a baby blanket or two and auctions them off. In 2009 and 2010, she brought blankets to the National Conference and collected $100! “My best advice for fund-raising would be to do it all year long and ask everyone you deal with for a donation,” suggests Donna. “I don’t think many people think to ask their dentist, hair dresser, etc. for donations. My vet in Virginia still gives me $100 every year! Plus, I am always looking for new ways to raise money!!!” A few years back, Donna announced she was moving to Nevada. We were heart-broken. Because Donna continuously earned her way to National Conferences, we were privileged to get to know her personally. Imagining a Peninsula Walk MS without her was disappointing…. until she announced that she promised to return each year to her “home turf”! And she has kept her promise! Since 1994, Donna has raised more the $60,000. Her dedication to the MS Community in Hampton Roads is unwavering.
She is a true inspiration!
Interested in Walking or Volunteering? Check out our website, www.fightMS.com. 20 | JOIN THE MOVEMENT: nationalMSsociety.org
VOLUNTEER
Calling All Volunteers!! The Hampton Roads Chapter is hosting two upcoming events, Walk MS & Bike MS, and we need all the volunteers we can get to fill a variety of positions. Volunteers are essential for the success of our events. Come join us for a chance to meet new people, make a difference in the lives of those living with MS, and have a great time. You will not be disappointed!
Walk MS
Saturday, April 9, 2011 at the Mariners’ Museum, Newport News Sunday, April 10, 2011 at Mt. Trashmore, Virginia Beach Volunteers Needed: Registration, Rest Stops, Set-Up & Breakdown, Food Service, Mission Table, Route Marking and Sign Sweep
Bike MS: Virginia’s Ocean to Bay Ride
June 4 & 5, 2011, Virginia’s Eastern Shore Volunteers Needed: Registration, Truck Drivers, SAG Drivers, Rest Stops, Set-up & Clean up, Luggage Beasts, Finish Line Support, Food Service, Camp Support, Massage Therapists, Route Markers and Sign Sweeps. For those of you looking to become a little more involved we have some key Committee positions available:
Bike MS Logistics Coordinator This individual has to be willing to attend monthly committee meetings from February until May 2011 and must be willing to work Bike MS Friday, June 3 through Monday, June 6. Individual should be organized, hard working and able to delegate. They will be in charge of loading/unloading event trucks, setting up and breaking down, dropping off supplies at rest stops along the route, working with the Director of Special Events and all other duties as assigned.
Walk MS Logistics Coordinator This individual must be willing to attend monthly committee meetings in February and March 2011 as well as available to work Walk MS Friday, April 8 through Sunday, April 10. They will be in charge of loading/unloading event trucks, setting up and breaking down, dropping off supplies at rest stops along the route, working with the Director of Special Events and all other duties as assigned.
Interested? Please contact Karla McCarraher, Director of Special Events, at karla.mccarraher@nmss.org or visit our website at www.fightMS.com if you are interested in volunteering with the Hampton Roads Chapter for any of the positions listed above.
Thank you for helping us to move closer to a world free of MS.
TOLL FREE NUMBER 1 800 344 4867
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Donations
Memorial Gifts & Tributes Honor Loved Ones The Hampton Roads Chapter of the National Multiple Sclerosis Society would like to sincerely thank the generous contributors who made memorial and tribute gifts between October 16, 2010 and January 21, 2011. The memory of a loved one, or the excitement of a special occasion, lives on through these thoughtful gifts.
Memorial Gifts Ruth Cunningham Frances Cruise Mildred Friend Shelly McGinnis & Bill Lackland JoAnne & Kitty Stevenson Teri Hibarger Fisher James & Leona Grubb Mary Anne Gibboney Lucy Cataldo Calvin & Sarah Ann Davis Karen Intrieri Patrick & Leah O’Donnell Mandy Schmidt Dennis Allion
Tribute Gifts Marilou Spacek Matt & Andrea Armstrong Elaine Chismer M.E. Duff, Jr. Jo Ann Gallup Richard & Miriam Hartman HDR, Inc. Karen Bairley Kruger Eileen Leininger Alfred & Norma Moore Parks & Lottie Morgan Portsmouth Public Utilities Administration & Business Offices Shoreline Contractors, Inc. Karen Smith John & Linda Spacek J.K. & Sarah Walski
Emily Anderson 5:30 Thursday Yoga Class
E. Thomas Tillett The Ware Company
Kelly Hollowell Peter Decker, III
Joseph Walat Jacqueline Rager
Holly Patrick Michael Patrick
If you would like to make a memorial or tribute gift, please contact the chapter at 757-490-9627 or visit www.fightMS.com 22 | JOIN THE MOVEMENT: nationalMSsociety.org
Jessica Burke Co-Workers at Klar/Vorhees Orthodontics Frances Forehand – In honor of her birthday Frank & Barbara Porter Rebecca Foss Lloyd & Alice Parcell Paul Galanti Constance Richeson Dr. Charles Hecht-Leavitt & MRI-CT Diagnostics Dr. Marcus Rice
In Honor of Her Aunt on her 10th Birthday Allison Frances Symmes Katelyn Tucker Joyce Tucker
help & Support
Hampton Roads Chapter Self Help Group Listing For more information on any of the following groups contact (757) 490-9627 unless otherwise noted. March 2, 2011 Gloucester Group 1st Wednesday of the month @ 10 am Riverside Wellness and Fitness Center 7516 Hospital Drive, Gloucester, VA March 3, 2011 African American Inspirational Group 1st Thursday of the month @ 10:30 am Hampton Public Library 936 Big Bethel Road, Hampton, VA For more information contact VeeGee at (757) 746-2103 or Veegee215@yahoo.com. Â March 8, 2011 Virginia Beach Morning Group 2nd Tuesday of the month @ 10 am Kempsville Public Library 832 Kempsville Road, Virginia Beach, VA For more information contact Pete at (757) 497-6594 or peterhennessy64@yahoo.com. March 9 & 23, 2011 Williamsburg Group 2nd & 4th Wednesday of the month @ 5:30 pm James City County/Williamsburg Community Center 5301 Longhill Road, Williamsburg, VA For more information contact JoAnn at (757) 220- 0902. March 10, 2011 Peninsula Evening Group 2nd Thursday of the month @ 5:30 pm Sentara Careplex Hospital (York River Entrance, Conf. Rm. C) 3000 Coliseum Drive, Hampton, VA For more information contact Diana at (757) 722-2492.
March 15, 2011 Chesapeake Group 3rd Tuesday of the month @ 7 pm Lifestyle Fitness Center at Chesapeake General Hospital 800 N. Battlefield Blvd., Chesapeake, VA For more information contact Margie at (757) 482-3247. March 16, 2011 Suffolk Group 3rd Wednesday of the month @ 6:30 pm Magnolia United Methodist Church 1764 Wilroy Road, Suffolk, VA For more information contact Willie Ann at (757) 539-0139. March 21, 2011 Elizabeth City Group 3rd Monday of the month @ 2:30 pm For group location and/or more information contact Melvin at (252) 335-9158. March 23, 2011 Southside Group 4th Wednesday of the month @ 3 pm Meyera E. Oberndorf Central Library (Folio Room) 4100 Virginia Beach Blvd., Virginia Beach, VA
Find someone to chat with on the web at www.msworld.org TOLL FREE NUMBER 1 800 344 4867
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Join the Golden Circle Today The Golden Circle recognizes donors who have made their mark against MS by making an annual gift of $1,000 or more. A commitment to Join the Movement® with an annual qualifying gift of $1,000 or more, will convey membership to the Golden Circle. Please join many other caring individuals, corporations, and foundations who want to do something more about MS now. Your gift will have immediate impact, and your commitment will enable you to have greater participation in advancing a cure for MS.
For more information contact Sharon Grossman by phone at 757-490-9627 or online at sharon.grossman@nmss.org.
Golden Circle members receive unique benefits, including: • Unmatched access to breaking research news • Invitations to research briefings with the experts • Invitations to the chapter annual meeting and the National MS Society Conference • A subscription to both the Momentum Magazine and MSConnection Newsletter
Chapter Staff Sharon L. Grossman, MSCIR Chapter President and Chief Professional Officer sharon.grossman@nmss.org Robyn M. Hirsch, MSCIR Programs and Services Director robyn.hirsch@nmss.org Karla McCarraher Director, Special Events karla.mccarraher@nmss.org Michelle R. Derr Vice President of Finance and Administration michelle.derr@nmss.org Shannon R. Rice Director, Community Development shannon.rice@nmss.org A copy of our organization’s financial statement is on file with and available through the State Division of Consumer Affairs in the Department of Agriculture and Consumer Services, upon request.
Did you know that Orange is the new Green? At least at the National MS Society it is! Help us “Go Orange!” by requesting the MS Connection as an e-newsletter sent directly to your Inbox! It will be in .pdf format and will have all of the same information that you currently receive. If you would like to help us conserve, send an email to info@fightms.com with the subject line “Go Orange!”