FALL 2013 HAMPTON ROADS CHAPTER
MS CONNECTION NEWSLETTER National Multiple Sclerosis Society Central & Eastern Virginia Chapter
EXCITING NEWS STAIR CLIMB MS PAGE 02 PAGE 06-07 INSIDE 04 10 12 17 THIS ISSUE 2013 ANNUAL MEETING & RESOURCE FAIR
MAKING HEALTH INSURANCE CHOICES
FOCUS ON MS RESEARCH
BE A DIGITAL MS ACTIVIST
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CHAPTER NEWS
LETTER FROM THE PRESIDENT Dear Friends,
The excitement continues as I share great news with you regarding the Central Virginia and Hampton Roads Chapters of the National MS Society. The two chapters are joining together to form a new chapter called the Central & Eastern Virginia Chapter. Your new chapter will now serve a total of 5,300 individuals with MS and their families. I feel by combining the talents of our boards, staff and volunteers we can more effectively meet two goals: (1) to enhance programs, services, and advocacy opportunities for those living with MS, as well as their families; (2) to increase fundraising and streamline operations to reduce costs, so that more money can go towards research and stay local to fund our mission. The new chapter will be official on October 1, 2013. We will have staff, volunteers and offices in Richmond and Virginia Beach. My promise is to continue to offer education, support, services, and advocacy to and for Central and Eastern Virginia residents and partner with local companies, volunteers, and organizations to ensure that fundraising activities like Bike MS and Walk MS are fruitful and grow. Throughout the summer, the staff and board of both chapters worked closely together to discuss and plan for the wonderful opportunities that are in front of us. I am thrilled to tell you that our new chapter territory will host two bike rides (one in June on the Eastern Shore and one in September in the Richmond/Williamsburg area), six walks, three corporate luncheons, and one corporate black tie dinner. There will also be many opportunities to be involved in awareness activities, volunteer, and participate through education, support, and advocacy programs. I am confident that the combined strengths of everyone who cares about MS in Central and Eastern Virginia will move us closer to the ultimate goal that we all share—a world free of MS. The best is yet to come,
Sherri Ellis Chapter President
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CHAPTER NEWS
OPPORTUNITIES TO MEET THE NEW STAFF Come meet the staff from the Richmond Office and hear about what we have planned for 2014:
ANNUAL MEMBERSHIP MEETING & RESOURCE FAIR WEDNESDAY, OCTOBER 23, 2013
5:15 pm: Resource Fair & Cash Bar; 6:45 pm: Dinner and Presentation Begin Attending the Resource Fair and Social Only: Free; Attending Dinner: $15/person See page 04 for more information.
GORDON BIERSCH TAPPING PARTY & SILENT AUCTION WEDNESDAY, NOVEMBER 13 • 5:00-8:30 PM See page 05 for more information.
STAIR CLIMB MS SATURDAY, NOVEMBER 16
See page 06-07 for more information.
NATIONAL MULTIPLE SCLEROSIS SOCIETY Hampton Roads Chapter 760 Lynnhaven Parkway, Suite 201 Virginia Beach, VA 23452 757-490-9627 or 1-800-344-4867 www.fightMS.com info@fightMS.com Chairman: Jim Dyche Chapter President: Sherri Ellis Design: Robyn M. Hirsch © 2013 National Multiple Sclerosis Society, Hampton Roads Chapter www.facebook.com/NMSSHRC
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 MS Society recommends that all questions and information be discussed with a personal physician. The Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The Society assumes no liability for the use or contents of any product or service mentioned.
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ANNUAL MEMBERSHIP MEETING & RESOURCE FAIR WEDNESDAY, OCTOBER 23, 2013
Please join us for our Annual Membership Meeting and Resource Fair! The evening will begin with a resource fair comprising of event sponsors and community organizations. Then we will move into our Annual Meeting where we will elect the 2014 Board of Trustees, hear a wonderful keynote presentation on the latest in MS Research, and applaud the efforts of the countless volunteers, fundraisers, and sponsors that have contributed generously to our mission.
KEYNOTE PRESENTATION: MS RESEARCH
Researchers are working tirelessly to discover new ways to treat MS and ultimately stop, repair and end the disease forever. This year’s presentation will focus on the latest in cutting edge research and what’s in the pipeline.
AS A MEMBER OF THE CHAPTER, WE ENCOURAGE YOU TO ATTEND AS WE CELEBRATE PAST SUCCESSES AND LOOK FORWARD TO ANOTHER YEAR OF EXCELLENT PROGRAMS, SERVICES, AND FUNDRAISING ACTIVITIES. If you are interested in serving on the Board, or would like to propose an individual for consideration, please submit a letter of interest and resume to Sherri.Ellis@nmss.org.
DETAILS:
Westin VB Town Center (4535 Commerce St., Va. Bch., VA) 5:15 pm: Resource Fair & Cash Bar; 6:45 pm: Dinner and Presentation Begin Cost: $15/dinner. You may pay by credit card or check in advance; payment will not be accepted at the door. Scholarships are available upon request. RSVP REQUIRED BY October 14th! Visit www.fightMS.com or call the chapter at 757-490-9627. •
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EVENTS
VOLUNTEER
WEDNESDAY, NOVEMBER 13 5:00-8:30 PM
Build real-world skills while helping create a world free of MS. The Chapter is looking for qualified full or part time college students to intern. Internships are available in a variety of fields. Academic credit/community service credit is available.
GORDON BIERSCH TAPPING PARTY & SILENT AUCTION Please join us for fun, food and great beer! Gordon Biersch Brewry Restaurant at Virginia Beach Town Center is tapping their seasonal Winterbock brew to benefit the National MS Society, Central & Eastern Virginia Chapter.
MAKE A DIFFERENCE WHILE LEARNING NEW SKILLS AVAILABLE INTERNSHIPS:
• $1 Winterbock beers starting at 6 pm (while keg lasts)
• Business Administration/Finance
• Over 50 Silent Auction Items
• Communications/Public Relations
• 50/50 Raffle drawings at 6, 7 & 8 pm
• Corporate Relations
• Great Music
• Special Events
If you have an item such as a gift certificate, gift basket, travel, tickets or other new merchandise that you would like to donate, please contact Tiffany Epley at 804-591-3036 or tiffany.epley@nmss.org.
• Client Programs (Social Work)
• Volunteer Program Management Contact Karla McCarraher at 757-319-4253 or by email at karla.mccarraher@nmss.org if you are interested in rounding out your education or if you know a student who may be interested.
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EVENTS: STAIR CLIMB MS
SKIP THE ELEVATOR, TAKE THE STAIRS! 16, 32, OR 64 FLOORS • AN UNBELIEVABLE VIEW • A WORLD FREE OF MS!
stair climb
We are very excited to host our 3rd Stair Climb MS event in a NEW Virginia Beach location, the Oceanaire Resort Hotel, on Saturday, November 16!
DO YOU HAVE WHAT IT TAKES TO MAKE IT TO THE TOP?
Stair Climb MS is a unique event where participants climb 16, 32, or 64 floors to the top of the Oceanaire Resort Hotel at the Virginia Beach Oceanfront and experience an amazing view of the Virginia Beach skyline.
TEAM UP FOR MORE FUN!
Forming a Stair Climb MS team is a great opportunity to share a fun experience with friends, family members, or co-workers--all while moving us closer to a world free of MS. Race against the clock and see who is the fastest on your team!
CLIMB IN COSTUME
Put on your creativity hat and don a costume for your climb. Group, couple, and individual costume contest winners will receive prizes.
REGISTER & BEGIN FUNDRAISING
As soon as you register, you’ll have access to our online tools, making fundraising easier and more convenient than ever! No minimum fundraising goal is required, but fundraising is encouraged. Climb Category Non-Competitive (Non-Timed) Competitive (Timed)
Flight Options 16 Floors (1x Bottom to Top) 16, 32, or 64 Floors (1x, 2x, or 4x Bottom to Top)
Registration Fee $50 $65
FUNDRAISING LEVELS:
(Reach one of these levels and receive a special prize!) Registration fee counts toward prize level. $150-Kilimanjaro Level • $300-McKinley Level $500-K2 Level • $1,000-Everest Level & Thousandaire Club Register today by calling Karla McCarrahaer at 757-319-4253 or visiting www.fightMS.com.
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VOLUNTEER: STAIR CLIMB MS
STEP UP AND VOLUNTEER FOR STAIR CLIMB MS Join our dedicated volunteers and contribute your energy and passion to help the National Multiple Sclerosis Society move toward a world free of multiple sclerosis. Volunteers make our events happen. There are many different teams to choose from at the Stair Climb MS event. Pick one or two and join us Saturday, November 16 at the Oceanaire Resort Hotel located on the Virginia Beach Oceanfront at 3421 Atlantic Avenue.
VOLUNTEER TEAMS:
Set Up/Breakdown Team—Assist with the set up and breakdown of tables, chairs, materials, and signage. Must be able to lift boxes, stand for long periods of time, and climb stairs. Information Team—Answer participants’ questions and direct them to various event areas. Registration Team—Check-in participants, hand out packets and direct them to the Timing Chip Company to receive Participant Bib and instructions. Participant Support Team—Provide support to various participant areas including, but not limited to: Start Line, Finish Line or After Climb Reception. Spirit Team—Cheer the participants. Volunteers are asked to bring lots of spirit and cheer! Stair Support Team—Monitor the stair well to ensure the safety of our participants. All volunteers must be able to stand for long periods of time and climb stairs. Volunteer Check-in Team—Check in other volunteers and direct them to assignment locations. If you would like to volunteer, please contact Deborah Richards at 804-591-3034 or deborah. richards@nmss.org or visit www.fightMS.com and click on the stair climb button and then “volunteers” in the left hand column.
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MS CONNECTION: FALL 2013
NEWLY DIAGNOSED
THE FIRST THREE MONTHS BY KATIE JENNINGS
Incredibly, it’s been three months since I was diagnosed with multiple sclerosis. Time flies when you’re busy and confused. These months have been a whirlwind of appointments and reading and exploration. I would not presume to give advice to people who have years of MS under their belts. But I would like to share my perspective about the bad and the good of being newly diagnosed, beyond just the physical symptoms.
THESE MONTHS HAVE BEEN A WHIRLWIND OF APPOINTMENTS AND READING AND EXPLORATION. THE BAD: I HAVE NO IDEA WHAT’S GOING ON.
I’m a person who prefers specifics. I like plans. I like goals. I once ran a marathon largely because I printed out a schedule and refused to deviate from it for five months. Since my diagnosis, I’ve spent a lot of time coming to terms with the fact that not everything is black and white. In January and February, I visited three different MS specialists, and each gave me a different diagnosis (relapsingremitting, primary-progressive, and finally
progressive-relapsing). Each doctor – wellmeaning and concerned – gave me a completely different sense of what the coming years may have in store. Maybe I’m standing on the edge of a cliff. Or maybe I’m just looking out at some rolling hills. If anything has become clear to me, it’s that nothing is clear. To be told, “You have MS,” doesn’t actually tell you very much. Each of us will have a unique experience, and our experiences will evolve and unfold at a pace largely outside of our control. For a planner like me, that’s very, very frustrating.
THE GOOD: I KNOW EXACTLY WHAT I NEED TO KNOW.
I have a six-year-old child, a full-time job, friends whom I never have time to see, and a family that lives too far away. Like many of you, I consider it a good day if I can return even half of the messages on my list. Life doesn’t leave a lot of time for considering the big picture. But learning that I have MS has crystalized one thing for me. As hokey as it sounds, the things that matter are the people I love. If everything else is stripped away (and it might be), those relationships will still be the things that matter. That’s not to say that I’ve given up on more trivial matters. I still care about whether my
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skinny jeans fit and where I’ll go on vacation this summer. But there’s a clarity about my priorities now that I may never have gained without a big kick in the pants. MS is nothing if not a big kick in the pants.
THERE’S A CLARITY ABOUT MY PRIORITIES NOW THAT I MAY NEVER HAVE GAINED WITHOUT A BIG KICK IN THE PANTS. I’ve chosen to be very public about my diagnosis. In the past three months, I’ve heard from many, many friends – and some strangers – with messages of love and support. And however difficult the reason for them, I won’t overlook what a gift those messages have been for me. I’m lucky despite it all, and I’m grateful. I hope you all have days that remind you of that as well. Katie Jennings keeps busy juggling a son, a husband, a job, an old house, a bossy cat and unpredictable Vermont weather. She was diagnosed with progressive relapsing MS in December 2012. She blogs about all of it at steadyshegoes.com. Originally published at MSconnection.org/ blog.
MAKING TREATMENT AND LIFESTYLE DECISIONS
People living with multiple sclerosis and their families now have more tools available to them than ever before, including 10 disease-modifying treatments, many symptom-management strategies and a spectrum of lifestyle-related options that can improve quality of life. However, making choices about which tools to pursue can be a complicated and emotional process, and it’s not the same for any two people. Learn about the factors you should consider when making your own treatment and lifestyle decisions. Call 1-800-344-4867 to request the DVD and companion book, Making Treatment and Lifestyle Decisions: Thinking Clearly About Benefits and Risks, now available in Spanish and English through the Society’s North American Education Program.
CONNECT WITH OTHERS
Connect with other individuals newly diagnosed with MS and share your experiences at www.MSconnection.org/ groups/newlydiagnosed.
10 MONEY MATTERS
MAKING HEALTH INSURANCE CHOICES
Starting Oct. 1, most people who don’t already have health insurance will have new options for coverage when the Health Insurance Marketplace—a component of the Affordable Care Act—begins enrollment for coverage to begin Jan. 1, 2014. The Web-based Health Insurance Marketplaces, (sometimes called “exchanges”) are a new way of shopping for health insurance coverage, allowing people to compare plans, get tax credits and other cost help. The program also includes government-certified “navigators,” who are expert health insurance counselors funded by the marketplaces to provide unbiased information, education and enrollment help to consumers at no cost. Coverage through marketplace plans is guaranteed regardless of pre-existing conditions, such as MS, and covers preventive and needed care, such as doctor’s visits, hospitalizations, maternity leave, emergency room care and prescriptions. All plans that participate in the marketplace have to show costs and what is covered in simple, understandable language that allows people to make “apples to apples” comparisons between plans. Enrollment begins October 1st at www.healthcare.gov. Visit www. nationalMSsociety.org/ACAkickin for more information or call us at 1-800-344-4867.
MS CONNECTION: FALL 2013
WAYS TO GIVE
GIVE AT THE OFFICE
Every year, people nationwide help create a world free of MS by contributing through their employer’s charitable giving campaign. Most campaigns kick off in the fall, so if you’ve been looking for an easy and efficient way to join the movement, act now. Simply designate your annual pledge to the National MS Society. Your donation will be automatically deducted from each paycheck to fund cutting-edge research and provide programs and services to help people affected by MS move their lives forward. • Combined Federal Campaign: #48028 • Combined Virginia Campaign: Look for Multiple Sclerosis Society, National and mark your card accordingly or just WRITE IN National Multiple Sclerosis Society #6049. • United Way: WRITE IN National Multiple Sclerosis Society on your pledge card. • City Employees: Look for Multiple Sclerosis Society, National and mark your card accordingly or just WRITE IN National Multiple Sclerosis Society #6049. These are our approved brochure numbers, but always check your brochure; look for National Multiple Sclerosis Society, Hampton Roads. If your employer doesn’t offer a giving program, talk to your benefits administrator or call us at 1-800-344-4867, option 2, to see if we can help.
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CHAPTER NEWS
2013 CAREGIVER OF THE YEAR
Show your caregiver that you care by nominating them for the special recognition they deserve! One extraordinary caregiver will be crowned “Caregiver of the Year” by the Hampton Roads Chapter.
HOW DOES THE NOMINATION PROCESS WORK?
Please mail or email your letter of support (1,000 words or less) telling us how your caregiver shines above all the rest. Please be sure to include a cover letter answering the questions listed below: 1. 2. 3. 4. 5.
What is your name, address and phone number? What is the name, address and phone number of the person you are nominating? What is your relationship to the nominee? (ex. Spouse, parent, friend) How long has s/he acted as your care partner? Describe his/her responsibilities as a care partner.
Nominations deadline: October 1, 2013.
THINGS TO KNOW:
• Please include pictures of the nominee and yourself if at all possible. • The nominee must have provided care to the nominator within the last 12 months. • By submitting a nomination you grant permission to the National Multiple Sclerosis Society (“NMSS”), Hampton Roads Chapter to use, reuse, publish and republish your name, voice, likeness, and/or other indicia of identity, in any medium now known or hereafter developed, alone or in conjunction with other material, without restriction as to changes or alterations, for editorial, educational, promotional and advertising purposes, including without limitation in connection with the solicitation of contributions and the furtherance of the corporate objectives of NMSS, and to use biographical and other information about me in conjunction therewith. • Submit your nomination by October 1, 2013 to: Mail: National MS Society, Hampton Roads Chapter Attn: Caregiver of the Year Panel 760 Lynnhaven Parkway, Suite 201 Virginia Beach, VA 23452 Email: robyn.hirsch@nmss.org For more information or if you have questions, please contact Robyn M. Hirsch at 757-319-4252 or robyn.hirsch@nmss.org.
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MS CONNECTION: FALL 2013
RESEARCH
FOCUS ON MS RESEARCH
excessive levels of uric acid and liver enzymes, and decreased potassium levels. Participants are being followed for a total of five years, and additional research is needed to determine the risks and benefits for people with MS of this experimental procedure.
A joint meeting held May 29 to June 1 by the Consortium of Multiple Sclerosis Centers (CMSC) and the Americas Committee on Treatment and Research in Multiple Sclerosis (ACTRIMS) showcased the latest directions in MS research. Here is a selection from more than 200 presentations on research seeking to STOP MS in its tracks, RESTORE function to those who have MS and to END the disease forever.
STOP MS
Researchers at the Colorado Blood Cancer Institute in Denver reported two-year results on a study following 24 people with highly active relapsing-remitting MS who were treated with bone marrow transplantation. Both relapses and disease activity observed on MRI scans were significantly reduced; however, there was significant loss of brain volume the first year, which then stabilized, and one person died. Other adverse events included
A study at the University of California, Los Angeles, tested whether male and female sex chromosomes influence the response of the nervous system to injury. In female mice genetically engineered to express the male (XY) or female (XX) chromosome, XY mice experienced a more severe MS-like disease. However, immune responses did not differ. If confirmed in further studies, such findings may help to explain why MS progression occurs faster in men, even though MS is more common in women.
RESTORE: REHABILITATION
Three separate studies reported results on falling issues. • Debra Frankel, vice president, Programs, Services and Clinical Care at the Society, reported that participants in the Society’s Free from Falls program improved in balance and walking, and that the psychological impact of falls was reduced, even six months after the program. (For more on how to participate in the Free from Falls program, call 1-800-344-4867 or visit www.national MSsociety.org/freefromfalls.)
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• At the University of Illinois at UrbanaChampaign, researchers found that fall risk decreased significantly and balance improved in 10 people with MS who participated in a 12-week, home-based exercise program, compared with 12 people who did not participate. The National MS Society is funding a continuation of the study to determine how exercise can be used to prevent falls in people with MS. • Researchers at the Oregon Health and Science University in Portland found that in 53 people with MS taking a range of medications, those taking no medications had a 27% risk of falls and that the risk of a fall increased 33% with each additional medication. Larger studies are needed to confirm how medications might affect the risk of falling, so that clinicians can consider this important aspect of MS management. A Society-funded study at the University of Illinois at Urbana-Champaign found that video-chat sessions with a behavior change coach improved results of a six-month physical activity program among participants. The results also showed reduced fatigue, depression and anxiety.
RESTORE: REPAIR
Investigators at Endece, LLC reported that the molecule NDC-1308 reduced cell death in the spinal cord of mice with an MS-like disease and activated genes important in the development of myelin-making cells. The company is supporting preclinical research to develop NDC-1308 as a possible future treatment for repairing damage in MS.
END MS
A Society-funded study at University of Miami found that 287 Hispanic/Latinos with MS were more likely to experience symptoms of motor weakness, ataxia (problems with muscle control) and bladder problems, when compared to 275 non-Hispanic whites with MS. Hispanic/ Latinos also responded more favorably to interferon treatments. For MS resources in Spanish and information about Hispanic/ Latinos living with MS, visit mueveteMS.org. A study at University of Utah, Salt Lake City, using a new technique called “deep sequencing,” found that the activities of genes that instruct retroviruses was significantly increased in 14 people with primary-progressive MS. Further studies in larger numbers of people to determine the significance of these findings are about to get underway with Society funding. Data collected from the Sonya Slifka Longitudinal MS Study, established by the Society in 2000 to study demographic and disease characteristics, use and cost of health services, access to care, quality of life, treatment and much more, is being made available to qualified investigators for studies on the direct and indirect costs of MS. These include the financial impact of out-of-pocket costs, informal caregiving, pregnancy and mental health treatment. To read more about the joint meeting and other recent MS research, visit www.national MSsociety.org/research or sign up at www. nationalMSsociety.org/signup to have MS eNEWS delivered monthly to your inbox.
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LIVING WITH MS
ADAPTIVE HUNTING Don Christensen has shot six deer in the past six years — using his mouth. The 47-year-old married father of two has hunted since he was seven. Christensen also has progressive-relapsing multiple sclerosis and is quadriplegic. He now uses a sip-and-puff trigger system to fire his rifle and crossbow.
Christensen offers adaptive hunting tips at afarcry.info, which he founded to help people with disabilities access the outdoors. The idea came from a comment a friend made when Christensen’s MS had progressed to the point that he had to give up a teaching job he loved, go on disability and face the very real possibility that he would never hunt again. “My friend said, ‘You can’t do things the way you used to, but what you can do is a far cry from sitting on the couch watching hunting shows and wishing,’” Christensen recalls.
“YOU CAN’T DO THINGS THE WAY YOU USED TO, BUT WHAT YOU CAN DO IS A FAR CRY FROM SITTING ON THE COUCH WATCHING HUNTING SHOWS AND WISHING.” DARN SURE TRYING
On his 20-acre property in Webster, Wis., most of the trails are wheelchair accessible. “My wife LeAnn
DON CHRISTENSEN CAN BE FOUND AT HIS DEER STAND ALMOST EVERY NIGHT FROM SEPTEMBER TO JANUARY.
gets me out to my deer stand and I hang out there every night during archery season,” he said. “I just love it. Once in a while I have to get serious and shoot a deer, but usually I just watch them.” LeAnn plays a big role, from researching and posting information for afarcry.info to sewing Velcro onto a shooting pad that helps keep the stock of Christensen’s rifle in place on his shoulder. His two children have also picked up their father’s enthusiasm for the outdoors. Beth, 24, “is the shooter” who prefers deer hunting, while son Riley, 20, “loves fishing most of all.” Christensen’s goal this year is to shoot a deer using his hand instead of his mouth, and he’s been working on strengthening every muscle from his fingers to lower back to do it. “I don’t know if it’s achievable, but I’m for darn sure going to try.”
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A SPECTRUM OF STRATEGIES
In contrast to Christensen, Russell Frye Jr. doesn’t have visible symptoms or mobility issues, but the Janesville, Wis., resident admits he had to work hard to regain his ability to shoot a bow back in the summer of 2004, after an exacerbation led to him being diagnosed with relapsing-remitting MS. “I told my occupational therapist, ‘I love to bow hunt and that’s what I want to get back to doing,’” he recalls. The therapist worked with Frye so that he could shoot a deer by September that same year — just hours before his wedding. In the years since, Frye has become a bit more strategic in planning his hunts. “Sometimes I
ADAPTIVE HUNTING TIPS
Drawn from his years of experience, Don Christensen offers the following tips for hunters with MS. • Get there early: Wheelchairs can be noisy when entering the woods. Allow time for everything to quiet down again. “You should be in your stand at least a half-hour earlier than everyone else,” Christensen says. • Wait for the animals: Whereas an ablebodied hunter can relocate to another spot if the hunting isn’t good, hunters with mobility issues can’t move as easily. Instead, be creative in changing up the same spot. Swap out decoys or use
15 wake up in the morning and don’t feel right, so I don’t hunt,” he explains. He also arranges his treatment injections to accommodate his hunting schedule, and makes sure he has someone hunting with him. If not, he tells people where he will be and what time he plans to be home in case an exacerbation occurs or he has a cognitive issue. All those steps are minor compared to the enjoyment he receives from hunting. “It’s not so much about having a trophy or taking the animal,” he said. “It’s really about the camaraderie of the sport.” This article was provided by the Society’s Wisconsin Chapter.
different calling techniques, for example. • Let some go: Those with mobility issues often are limited in their ability to reposition themselves when trying to find a clear shot. Some adaptive equipment is available to help with this, but in many cases, they’ll need to set aside the crosshairs and go to observation mode instead. As with any new physical activity, consult your healthcare provider beforehand. States have different regulations regarding hunting and hunting licenses; make sure to find out what your state specifically requires.
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VOLUNTEER SPOTLIGHT
MEET OUR 2014 BIKE MS: VIRGINIA’S OCEAN TO BAY RIDE EVENT COMMITTEE The Bike MS Committee is comprised of a great group of volunteers, sponsors and cyclists with one common goal in mind – hosting the best Bike MS: Ocean to Bay Ride each year. The Committee starts meeting in December – about 6 months before the June event and has the Wrapup Meeting in August. It literally takes almost a year to plan and execute a successful Bike MS event. They work to make sure: the route and rest stops are secure; volunteers are recruited to help at the event; food is donated for lunches, the finish and rest stops; they brainstorm ideas to recruit more cyclists and secure sponsorships; and so much more!
The Bike MS Committee is an extension of the Staff and key to the success of the event. This year we appointed Jay Talman to serve as the 2014 Committee Chair. Jay is a 30 year participant in our Bike MS and a longtime committee member. Jay has a wealth of knowledge and experience with the Bike event. Jay will work closely with his newly appointed Co-Chair, Debbie Drees, and the Bike MS Director, Karla McCarraher.
THE 2014 BIKE MS COMMITTEE: • • • • • • • • • •
Mary Ahrens—Road Marshalls Bob Banach—Logistics Barbara Bodenstein—Cyclist Joe Bushey—Cyclist Debbie Drees—Committee Co-Chair Michael Drotar—Volunteers Mickey Giles—Road Marshalls Walt Gonzales—Bike Shop Sponsor Herb Hood—SAG Vehicles Bobby Matthews—Medical
• • • • • • •
Mike Olenik—Route Mei Ling Perkins—Food Sponsor Glen Pierce—Ride Mentor & Cyclist Rick Powell—Safety Dave Seitz—Medical Debbie Smith—Volunteers Jay Talman—Committee Chair (pictured above) • Arthur White—Communications • Arthur Wolfson—Cyclist
THANK YOU TO THE COMMITTEE FOR THEIR HARD WORK AND DEDICATION TO BIKE MS!
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ADVOCACY
BE A DIGITAL MS ACTIVIST In 2012, MS activists sent tens of thousands of emails, placed hundreds of phone calls, and made hundreds of in-person visits to members of Congress asking for their support on issues important to people with multiple sclerosis and their families. And now there are more ways for MS activists to connect—online.
DRIVING CHANGE
Digital MS activists—like all MS activists— want to drive change and do so by amplifying their voice and connecting with elected officials over social media. At www.nationalMSsociety.org/digiMSactivist, learn how to share your story, connect with other MS activists and build relationships through social media and email. The webpage includes ways to: • Get informed. Become part of the MS Activist Network. Receive e-newsletters and Action Alerts about important pieces of legislation. Send emails with a few clicks of your mouse. • Rise up. Learn where your elected officials stand. Speak out on issues important to you as a person affected by MS. • Take Action. Build relationships with elected officials by posting on and liking their social media pages and by thanking them on Facebook or Twitter for their supportive actions.
• Recruit. Encourage others to join the movement by directing them to our video at ntl.ms/YouCanBeAnMSActivist, or to www. nationalMSsociety.org/digiMSactivist. Become a digital MS activist and help shape the conversations today that will drive change tomorrow—we promise you, people will listen!
DEAR COLLEAGUE
“Dear Colleagues” are important tools in supporting legislation that impacts people with MS. They are letters sent by one or two members of Congress to fellow members, usually asking for co-sponsors on a new bill or seeking to influence recipients’ votes on a particular issue. The Society often helps compose letters that support legislation important to people with MS. MS Activists help gain signers through Action Alert emails. This spring, Dear Colleagues were circulated in Congress to support $10 million in funding for the MS Congressionally Directed Medical Research Program, $32 billion for the National Institutes of Health, and $2.5 million for the Lifespan Respite Program. The Congressional MS Caucus and MS activists are working in coalition with other groups to preserve these funding levels for FY 2014. To join the effort, go to www. nationalMSsociety.org/MSActivist.
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MSMS CONNECTION: CONNECTION: SPRING FALL 2013
COMMUNITY CALENDAR FINANCIAL PROGRAMS IN THIS SECTION ARE NOT ORGANIZED BY THE NATIONAL MULTIPLE SCLEROSIS SOCIETY. ASSISTANCE MULTIPLE SCLEROSIS EDUCATIONAL GROUP PROGRAMS
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 MS 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 information call 757-8757880.
CAN DO MULTIPLE SCLEROSIS WEBINARS
The chapter provides shortterm, limited, and reasonable financial assistance to address the specific challenges that living with MS can cause.
CATEGORIES:
• Emergency Assistance • Independent Living Needs • Home & Vehicle Modifications • Mental Health Needs • Physical Health Needs • Wellness Programs • Durable Medical Equipment/ Assistive Technology
Join Can Do MS live from the convenience of your home, at no charge, for an in-depth discussion on topics relating to exercise, nutrition, communication, symptom management and total health.
To learn more contact the chapter at 757-490-9627 option 2.
October 8 from 8–9 p.m.: Questions & Answers: Live with the Can do Experts
WE ARE DEDICATED TO REACHING OUT TO INDIVIDUALS AND FAMILIES LIVING WITH MS AND TO MEETING THEM AT THEIR POINT OF NEED.
November 12 from 8–9 p.m.: Emerging Therapies: What Does the Future Offer? To register visit www.mscando.org/multiple-sclerosisprograms/webinar-series/register or call 800-367-3101 x1281.
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NATIONALMSSOCIETY.ORG | 1-800-344-4867
SELF HELP GROUP LISTING FOR MORE INFORMATION CONTACT (757) 490-9627 UNLESS OTHERWISE NOTED. SOUTHSIDE
Chesapeake Group 3rd Tuesday of the month @ 7 pm Lifestyle Fitness Center @ Chesapeake General Hospital 800 N. Battlefield Blvd., Chesapeake, VA For more information contact Margie at (757) 482-3247. 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. Southside Group 4th Wednesday of the month @ 3 pm Sept.-Kempsville Public Library Oct.-Reginella’s Restaurant (4000 Va. Bch. Blvd., VB 23452) Nov.-Meyera E. Oberndorf Central Library, Libris Room
PENINSULA
Gloucester Group 1st Wednesday of the month @ 10:30 am Riverside Wellness and Fitness Center 7516 Hospital Drive, Gloucester, VA African American Inspirational Group 1st Thursday of the month @ 11 am Hampton Public Library 936 Big Bethel Road, Hampton, VA For more information contact D’Andre at (757) 660-3455/deejazzu44@aol.com or VeeGee at (757) 696-2540/Veegee215@yahoo.com. 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) 358-0284.
MS KNOWS NO TIMETABLE–THIS IS WHY WE OFFER SUPPORT WHEN YOU WANT AND NEED IT. ON THE PHONE: ONLINE PEER CONNECTIONS: MSFriends: Peer Telephone Support Connect with an MSFriend at 866-673-7436, 9 am until Midnight ET.
CHAT ROOM & MESSAGE BOARDS: MSWorld—www.msworld.org
MSConnection—www.msconnection.org Connect with others on a discussion forum, join an online support group, or make a one on one peer connection via email (telephone support also available if needed).
NON-PROFIT ORGANIZATION U.S. POSTAGE PAID Norfolk, VA Permit # 162
Hampton Roads Chapter 760 Lynnhaven Parkway Suite 201 Virginia Beach, VA 23452
CHAPTER STAFF Sherri Ellis, Chapter President 804-591-3030; 757-319-4254; sherri.ellis@nmss.org Michelle R. Derr, Vice President of Finance and Administration 757-319-4251; michelle.derr@nmss.org Robyn M. Hirsch, Director, Programs & Services 757-319-4252; robyn.hirsch@nmss.org Karla McCarraher, Director, Special Events 757-319-4253; karla.mccarraher@nmss.org
(L to R) Michelle Derr, Karla McCarraher, Robyn Hirsch
WE MOBILIZE PEOPLE AND RESOURCES TO DRIVE RESEARCH FOR A CURE AND TO ADDRESS THE CHALLENGES OF EVERYONE AFFECTED BY MS.