SUMMER 2016 VIRGINIA - WEST VIRGINIA
MS CONNECTION NEWSLETTER
SAVE THE DATE: DINNER OF CHAMPIONS PAGE 05
INSIDE 07 THIS ISSUE
THE NATIONAL MS SOCIETY’S 25TH PUBLIC POLICY CONFERENCE
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ON THE MOVE TO FIGHT MS
BIKE MS EVENT: TAKE ME HOME COUNTRY ROADS
Money Matter NEW FINDINGS ON EMPLOYMENT & MS
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Thank You TO THE 2016 WALK MS SPONSORS!! Your generosity made it possible to serve over 6,800 walkers who raised over $669,000
VIRGINIA SERIES SPONSOR
START/FINISH LINE SPONSORS
PLATINUM SPONSORS
Big NDN DJ Services
Diamond Springs
Peninsula Funeral Home
Carolina Ale House
Martin’s
PermaTreat
CiCi’s Pizza
Mary Washington Healthcare
Wegmans
NATIONALMSSOCIETY.ORG | 1-800-344-4867
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INTRODUCING UNIVERSITY OF VIRGINIA MULTIPLE SCLEROSIS CIO CLUB The Multiple Sclerosis Society at the University of Virginia is proud to announce that it is an official CIO (Contracted Independent Organization) at the University! The club’s mission is to form a network on UVA’s Grounds to support those impacted by Multiple Sclerosis (MS) at UVA and beyond to work towards a world free of MS. The main focus at the beginning of the next school term will be to increase its membership. After creating a foundation for the club, the MS Club will focus on membership. The club will work to raise awareness on the fight against MS today and will host a guest speaker, a researcher from Vanderbilt University, during the first semester. For the duration of the second semester, the club will closely collaborate with the National Multiple Sclerosis Society in Virginia and West Virginia and support the Society with Walk MS: Charlottesville and other fundraisers.
2016 MS Webinar & Telelearning Series The 2016 MS Webinar & Telelearning Series brings together a collaboration of MS experts to help you build strategies to live your best life with MS. Each free webinar and telelearning program features two presenters with time for Q&A. Please join us online or by phone at 8 pm EST on topics including: • July 12, 2016 – Managing Symptoms: Spasticity • August 9, 2016 – Mood in MS • September 13, 2016 – Health Insurance • October 11, 2016 – Support Partners & Families • November 8, 2016 – Diet and Nutrition • December 13, 2016 – Importance of Sleep Register at nationalMSsociety.org/telelearning or call 1-800-344-4867.
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CHAPTER NEWS
2016 PROGRAMS & EVENTS BIKE MS BIKE MS: COUNTRY ROADS RIDE August 27-28, 2016
ROUTE OPTIONS: West Virginia The Greenbrier to Snowshoe and back • Two Day Road Route: 65 or 75 miles each day • Two Day Trail Trek: 70 miles each day
DINNER OF CHAMPIONS • Thursday, September 22, 2016 Charlottesville, VA Honoree: Ron Tweel The Omni Charlottesville Hotel • Tuesday, September 27, 2016 Roanoke, VA Honorees: Abney Boxley & Lucy Russell Ellett The Hotel Roanoke & Conference Center • Thursday, September 29, 2016 Charleston, WV Honoree: The Honorable Gaston Caperton The Embassy Suites, Charleston
• Thursday, October 6, 2016 Richmond, VA Honoree: Tony Markel The Jefferson Hotel
PROGRAMS, SERVICES, & ADVOCACY • September 9-11, 2016: Weekend Escape • September 30 – October 2, 2016: Can Do MS TAKE CHARGE®
ONGOING PROGRAMS & SERVICES: • Information & Referral • Financial Assistance • Self-Help Groups • Educational Programs • Quarterly Newsletters *Please visit msvirginia.org and mswestvirginia.org for more information and updates
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DINNER OF CHAMPIONS SAVE-THE-DATE Every year, the Society gathers the best and brightest community leaders together at the MS Dinner of Champions to provide awareness and information about Multiple Sclerosis and how it affects the lives of 2.3 million people worldwide. The Dinner of Champions was established to recognize distinguished leaders, local corporations and their employees in the community. Friends and colleagues of the guest(s) come together for an evening to share experiences and stories of the honoree(s) and raise both awareness and funds for the National MS Society. • Thursday, September 22, 2016: Charlottesville, VA Honoree: Ron Tweel The Omni Charlottesville Hotel • Tuesday, September 27, 2016: Roanoke, VA Honorees: Abney Boxley & Lucy Russell Ellett The Hotel Roanoke & Conference Center • Thursday, September 29, 2016: Charleston, WV Honoree: The Honorable Gaston Caperton The Embassy Suites, Charleston • Thursday, October 6, 2016; Richmond, VA Honoree: Tony Markel The Jefferson Hotel
06 CHARLOTTESVILLE LEADERS STEP OUT TO FIGHT MS
Community leaders gathered on April 21st at the Glenmore Country Club for the Charlottesville On the Move Luncheon. Guests were treated to a sumptuous meal expertly prepared by Glenmore Executive Chef Frederick Nussbaum. A chance raffle was also held, featuring 18 beautifully composed theme baskets filled with an exciting array of activities, goods, and services. Dr. Alban Gaultier, Assistant Professor of Neuroscience at the University of Virginia, shared the latest developments in UVA’s multiple sclerosis research. Virginia Youth Football coach, Felicia Correa Garcia, spoke about her MS journey, inspiring all to work together as a team to see MS defeated. Fundraising totals for the event were impressive, with a gross amount of $56,444. Ticket sales ($19,250), raffle ticket purchases ($4,486), sponsorship ($26,000), and general donations ($6,708) generated much needed funds for continued MS research and patient programs and services. The On the Move Luncheon Committee wishes to thank everyone involved in the planning and execution of this marvelous event. We look forward to hosting everyone again in 2017!
PROGRAMS WEEKEND ESCAPE: THE BRIAN MASON RESPITE CAMP SEPTEMBER 9-11, 2016 • SMITH MOUNTAIN LAKE, VA Weekend Escape is a respite camp designed to give people with MS and their families, caregivers, and friends an opportunity to take a break and enjoy a
MS CONNECTION: SUMMER 2016
weekend of fun, relaxation, and education. A staff of nurses and nursing assistants are available for all participants needing help with personal care. Registration ($75 for adults and $30 for children 18 and under) opens July 1, 2016. The registration deadline is August 1, 2016. To register, call the chapter at 1-800-344-4867. Limited space is available. ABOUT WEEKEND ESCAPE Weekend Escape takes place at the W.E. Skelton 4H Center on Smith Mountain Lake, Virginia. The camp is about 25 miles southeast of Roanoke. More information on the camp can be found online at www.skelton4hcenter.org. Those with MS and their families are welcome to attend and accommodations are made so that you will be comfortable and able to have fun! The 4-H Center is fully accessible and all activities are designed for all participants with varying abilities. The Chapter also provides a health care staff so that caregivers get a break as well. All medical assistance is taken care of for the weekend. The center has many barrier-free overnight rooms. Be sure to indicate your accessibility needs and health care needs when you register. Weekend includes food, lodging and activities. Families will have the opportunity to participate in putt-putt golf, swimming, horseshoes, crafts, tennis, fishing, and much more. There are also kid’s activities such as a nature hike, arts and crafts, and a tie-dye activity. On Friday night we play a grand game of Bingo, and Saturday night we will have a talent show and an evening dance showcasing the work of Cinderella’s Closet. The volunteers from Cinderella’s Closet will provide evening gowns and suits, as well as make-overs, for those who would like to participate. Dormitory and hotel style rooms are available. All rooms are clean and air conditioned. Participants must bring their own sheets and towels.
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NATIONALMSSOCIETY.ORG | 1-800-344-4867
THE NATIONAL MS SOCIETY’S 25TH PUBLIC POLICY CONFERENCE MICHAEL OLEX For the last year, I have been volunteering with the National MS Society as a District Activist Leader. In this role, I communicate regularly with my legislators and inform them about issues that are important to people with MS. This March, I joined 350 other MS Activists from across the country to attend the Society’s 25th Public Policy Conference (PPC). It was a motivating and inspiring experience and I learned firsthand the critical role that advocacy plays in moving us closer to a cure for MS. I have been a registered voter for 20 years, yet our Senators and Representatives in Washington, D.C. have always seemed to be abstract persons who were far removed from our day-to-day life. This was an illusion that went away quickly while I was at PPC. I had the opportunity to share my story and educate legislators and their staff members about MS and our three priority issues – access to prescription medication, increased funding for research and the need for better data. Legislators understand that the cost of medication continues to rise. Our goal is to tell them how those rising medication prices are affecting us, as patients. We asked Congress to hold a hearing to address this issue from a patient perspective. Did you know that between 2004 and 2015, the cost of MS medications has
08 increased 300%? As a Self Help Group leader, I’ve heard stories of people having to decide between paying for their medication and other needs like shelter, food, and childcare. This is a choice that no one should have to make. The research community has made tremendous progress in the past few years but there is still more work to be done. While at PPC, we asked our legislators to increase funding for research at the National Institutes for Health (NIH) and the Congressionally Directed Medical Research Program (CDMRP). In the past 4 years, funding for MS-related research at NIH has decreased by almost $20 million! With better funding, researchers may be able to determine the cause for this disease and ultimately a cure. We asked for Congress to provide $34.5 billion in funding to the NIH and $10 million to the MS program at the CDMRP. Our final ask was that Senators co-sponsor and pass the Advancing Research for Neurological Diseases Act (H.R. 292 / S.849). The last major study of the prevalence and incidence of MS was completed in 1975. Therefore, the
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numbers that we use to quantify how many people have MS are outdated. The bill would create a centralized data collection system at the Centers for Disease Control to track prevalence and incidence data for people diagnosed with neurological conditions, including MS. It will provide researchers with tools to better understand factors such as geographical distribution, ethnic and gender ratios and how they relate to disease. H.R. 292 has already been passed by the House! When I returned home from the Public Policy Conference, my wife joked with me and said, “You’re not normally this passionate about things. This was a big deal, wasn’t it?” Yes! PPC helped me realize that I am not alone in this fight against MS. There are MS Activists all over the country who are ensuring that legislators are hearing the voices and stories of people living with MS. Together we are stronger, and we are going to end this disease! For more information about our advocacy efforts, please contact Ashley Kenneth at ashley.kenneth@nmss.org.
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ON THE MOVE TO FIGHT MS Director, Alison oversees all recreation therapy, fitness and wellness services for Sheltering Arms. She regularly plans and implements community education programs and supports programs for individuals with a variety of conditions, including MS, and their caregivers. Alison dedicates her time and expertise to other organizations through service on their boards as well. She’s a dedicated wife, mother, friend and West Virginia Mountaineer fan. Alison’s positivity and laugh are infectious and she is truly an inspiration! The Virginia – West Virginia chapter of the National MS Society hosted the annual On the Move Luncheon on Wednesday, June 8th at the Omni Richmond Hotel. The gathering of community professionals served to unite attendees for the cause and to encourage involvement in the fight against MS. In 2011, the organizers agreed to create a special award to recognize members of professional excellence and their commitment to the cause. The On the Move award is given annually to individuals who embody these qualities. Our 2016 honorees are Alison Clarke and Rhonda Riggleman.
Alison Clarke Alison has been making a difference in the lives of patients at Sheltering Arms for 26 years. She joined the organization as a recreational therapist in 1990. Noticing a need in the community and among patients being discharged from Sheltering Arms, she proposed the development of the Club Rec program – a day recreation program for individuals with disabilities or physical limitations who can benefit from supervised social, recreational and wellness activities. The program, which opened in 1999 with just two patients, has grown to 86 patients today! Now serving as the Community Recreation Services
Rhonda Riggleman Rhonda Riggleman has been devoted to Sheltering Arms and her patients since 1994. A recreational therapist by background, Rhonda has managed the Club Rec day recreation program at Sheltering Arms since it opened in 1999. Though the program’s “official” hours are 8:00-4:30 Monday – Friday, Rhonda is not content to stop there. From evening bowling and bingo nights, to skiing and weekend camping trips offering respite to family and caregivers, Rhonda has provided incredible opportunities and experiences for her patients. Several years ago one patient jokingly mentioned wanting to go on a cruise. Rhonda’s first thought was “why not?” She immediately contacted a travel agent and since that time has planned several trips, ensuring every detail was covered - from securing rooms with wheelchair accessible bathrooms to arranging excursions while visiting island ports - to accommodate travelers with a wide range of disabilities. Her commitment to the organization and the lives of her patients and their families is nothing short of remarkable. When she is not with her patients, Rhonda can typically be found surrounded by friends, staying active with her dog in the outdoors, or cheering on her VCU Rams.
10 Contact: Linzy Browne Marketing Manager 804-‐822-‐3075 linzy@capitalalehouse.com
MS CONNECTION: SUMMER 2016
FOR IMMEDIATE RELEASE April 20, 2016
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Community Service CAPITAL ALE HOUSE CYCLING TEAM RICHMOND, VA-‐ Capital Ale House’s Cycling Team raised their $500,000th dollar in donations to The National Multiple Sclerosis Society (MS) after 10 years of fundraising. To reach their goal by the Colonial Crossroads ride on June 4th and 5th the team met at Capital Ale House of Innsbrook on April 14th for an evening of BikeMS Fundraising Blitz! The Blitz at Capital Ale House was full of team riders and supporters who reached out to friends, family and potential donors by phone, text, email, and social media asking for the last $15,000 to hit their $500,000 mark. By 7 p.m. the team received a large donation reaching their goal, popping a bottle of bubbly to celebrate! “This is an exciting time for our team! They have grown so much, biked so far and have raised an amazing amount of fund and awareness for the MS Society.” – Linzy Browne, Beer Corps & Marketing Manager for Capital Ale House. The Capital Ale House Cycling Team was established in 2005 by John and Marty Polk. The team has grown from originally 15 members to over 70 who ride together throughout the year. The largest turnout and commitment is the annual Colonial Crossroads Ride. Riders can choose from 2-‐day, 75-‐ or 100-‐mile routes or 1-‐day, 25-‐ or 50-‐mile routes. “This ride is a struggle for most but a joy for all. Every year the team prevails in supporting the MS Society by signing up to ride and raising awareness for BikeMS.”—John Polk, Captain and Founder of the Capital Ale House Cycling Team. Throughout the year the cycling team participates in local rides and offers training to new riders. There is a monthly meet up located at Capital Ale House of Innsbrook to discuss upcoming rides and membership. To gather more information about the Capital Ale House Cycling Team, visit their Facebook or Twitter pages. Facebook: Capital Ale House Cycling Twitter: @CAHCyclingTeam
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NATIONALMSSOCIETY.ORG | 1-800-344-4867
EVENTS
TAKE ME HOME – COUNTRY ROADS Before you blink, summer will be coming to an end. Don’t miss the opportunity to participate in or volunteer for our West Virginia Bike MS event—Bike MS: Country Roads Ride.
BIKE MS: COUNTRY ROADS RIDE Date(s): August 27-28, 2016 About the Ride: Enjoy the scenic roads of the Greenbrier and Pocahontas counties of West Virginia as you pedal along with other cyclists riding to create a world free of MS! Road cyclists will take in some of West Virginia’s most beautiful territory sneaking a peak at Senator Rockefeller’s countryside home and riding through Greenbank Observatory. Likewise, trail cyclists will enjoy the beautiful Greenbrier River Trail--a packed, crusher surface with a mere one percent grade. This fun and safe ride is fully supported with rest stops every 10- 15 miles, Support and Gear (SAG) vehicles, medics, and bike mechanics. Start/Finish Location: Road Route-The Greenbrier Trail Trek-The Greenbrier Youth Camp Overnight Location: Snowshoe Mountain Resort
ROUTE OPTIONS:
Two Day Road Route: 65 or 75 miles each day Two Day Trail Trek: 70 miles each day
Registration: $45 (plus accommodations) Register online at bikeMS.org or by phone by contacting 855-372-1331. Participants must be 18 or older and raise a minimum of $300 in donations.
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"I have MS. But my MS doesn't have us." Be Informed. Get Involved.
Take Charge Toda y. Can Do Multiple Sclerosis | TWO DAY
TAKE CHARGE® PROGRAM Join us for a two-day wellness weekend for people living with MS and their support partners, where we will explore an interactive and multi-disciplinary approach to MS care management. Learn the individualized skills and mindset to take charge of your health and life with MS. PARTICIPATORY WORKSHOPS
INTERACTIVE PRESENTATIONS
• • • • •
Managing MS Kitchen Adaptation & Nutrition Bladder Management Communication & Coping Goal Setting
• • • • •
Mood & Cognition Exercise, Strength & Balance Recreation & Leisure Fatigue Management Support Partner Sessions
SEPT. 30 - OCT. 1, 2016 WHEN...... 5:30pm
Friday - 3:30pm Sunday
WHERE.... Norfolk
Marriot Waterside 235 E. Main Street, Norfolk, VA 23510
FEE............. $100
ACCESS TO MS EXPERTS
registration fee (per couple) includes all meals, hotel accommodations, presentations, and workshops for the weekend program. Application opens June 29th.
• • • • •
Nurse Practitioner Occupational Therapist Physical Therapist Psychologist Dietitian
Apply Today! Online www.mscando.org/TAKECHARGE
Call or Email 800.367.3101 ext.1275 lcoyne@mscando.org
In collaboration with the National MS Society, Virginia - West Virgina Chapter.
This program is possible thanks to the generous support of the following sponsors:
Novartis Pharmaceuticals | Biogen | Genentech, Inc. | Sanofi Genzyme Mallinckrodt Pharmaceuticals Autoimmune and Rare Diseases | Mellam Family Foundation
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NATIONALMSSOCIETY.ORG | 1-800-344-4867
NEWS
SCHOLARSHIP Multiple sclerosis shouldn’t stand in the way of an education. The National MS Society’s scholarship program exists to help highly qualified students who have been diagnosed with MS or have a parent with MS achieve their dreams of going to college. We are proud to honor the following students for their academic and extracurricular endeavors:
Alyssa Hall Ona, WV Davidson College $1,000
Not Pictured: Luke Mainwaring Glen Allen, VA University of Pennsylvania National Award $3,000
Timothy Miles Rocky Mount, VA Virginia Tech $1,000
Courtney Randolph West Union, WV West Virginia University $1,000
Me’Lisa Thompson Norfolk, VA Virginia Commonwealth University $1,000
Roy Toston Richmond, VA Davidson College $1,000
To learn about the 2017 scholarship cycle, visit nationalMSsociety.org/scholarship or call 1-800344-4867. Are you interested in honoring a loved one by sponsoring a 2017 scholarship? Contact Jamie.peed@nmss.org for more information.
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THE NECESSITY OF HOPE “Everybody tolerates different things,” emphasizes Jennifer Rios, 33, who was diagnosed with multiple sclerosis in 2000. “I found what worked for me.” That includes a natural diet, supplements and an intense type of physical training called the Barwis Method.
JENNIFER
DIAGNOSED IN 2000
JENNIFER RIOS, CENTER, WITH HER SON AND MOTHER.
“It’s the hardest work I’ve ever done,” says the Dearborn, Michigan, resident of her training sessions three times a week, but she is determined to walk again after she broke her ankle a few years ago. “My brain lost communication with my legs,” Rios says. “But I’ve gotten so much stronger. I’m not walking yet, but I can move my legs on my own again.”
writes about how she was diagnosed at 18 and that one of the first decisions she made after her diagnosis was to have a baby. Today, she and her son Sean, now 14, participate together in Walk MS. “We’re a great team,” she says. Sean even inspired her career as a teacher and reading specialist. “I watched him learn how to read and thought, I can do this.”
She says at first she was the only person in a wheelchair at the facility where she works out, and that it was “intimidating.” But she was determined to push forward. “If you work hard, maybe things can change. When you have a disability, being able to do some things is so huge. I may only move my leg five times, but it feels like I’ve run a marathon.” Now other people who use wheelchairs have joined the facility, including another woman with MS.
“My son and my mother are my two helpers,” Rios says. In fact, she jokingly recalls a recent moment where she asked her mother, who lives a 10-minute drive away, “Are you my ‘caregiver’? She just laughed. I had really thought we were just hanging out!”
Rios has been chronicling her sessions and other aspects of her life with MS on her blog, www.notspinningmywheels.com. There she
“Sometimes MS is so difficult to live with, but what else am I going to do?” Rios says. “I need hope because this disease is so mean. I have to hold onto that hope. What I’m doing gives me hope that I can control my life.” n
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NATIONALMSSOCIETY.ORG | 1-800-344-4867
FINISH MS PATRICIA RICHARD Patricia Richard, has been raising money for the National MS Society for over 20 years. The first 15 years was for Bike MS 150, and the last 5 years she has be raising money through DIY’s and Finish MS. This year she and her husband Bill are travelling across country participating in numerous triathlons. In total she has raised $34,197.00 since 2004. We appreciate her dedication and hard work in changing the lives of people living with MS!
Thank you to Bertucci’s Italian Restaurant Short Pump! Scott and his team have fundraisers for us 3 days every month, and raised $482.00. Thanks for being a great partner in our fight against MS!
WELLNESS SPOTLIGHT: EASTERN VIRGINIA
Yoga Class Every Tuesday at 4 pm 420 Thalia Rd., Virginia Beach, VA 23452 Diane McCabe 757-724-7526
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A HELPING PAW Venus the service dog helps Mike and Ann Bunting with many things, and one of them is participating on their Walk MS team, The Fighting Shamrocks, while wearing her special shamrock-patterned collar. “We’re always accepting people to be part of the team,” say the Trenton, Michigan, residents. Thirty-six years ago, Mike Bunting was diagnosed with multiple sclerosis. And, 10 years ago, the Buntings’ children decided it was time for some extra help. “While my daughter was at college,” remembers Ann, “she filled out an application for Mike to get a service dog.” After an interview to see what services Mike needed, the couple settled in for a two-year wait while Venus was trained to perform those services. “She opens the sliding door to the back yard, she gets things that I drop and she gets the phone for me. But her primary purpose is to help me if I fall or stumble,” says Mike, who now has secondary progressive MS. “She will seek out help,” adds Ann. “She comes to me and her tail will be going a mile a minute. She’ll paw me and then she leads me to Mike.” Like many service dogs, Venus also offers emotional support. “We take her virtually everywhere,” says Ann, which also makes her part of how they educate people about MS. “With Venus, people will talk to Mike. Without
MIKE
DIAGNOSED IN 1983
FROM FETCHING THE PHONE TO RAISING AWARENESS ABOUT MS, SERVICE DOG VENUS IS A HUGE HELP TO ANN AND MIKE BUNTING. her, they don’t.” “We put up a little sign saying, ‘I’m bored,’” jokes Mike, who uses a wheelchair and will wait in it while Ann is shopping. “We try to have fun with it, but a lot of people don’t know what MS is. We didn’t know what it was when we first got it.” Recently, the Bunting family had to learn even more about the disease when their daughter, Rebecca, was diagnosed with it. “It was a shock,” says Mike. “We had been told the chance of our daughters getting the disease was slim.” Today, the family bands together even more. “We had a team for Mike, and now we have a team for Mike and Becky,” says Ann. “Venus always participates—people love her.” n
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NATIONALMSSOCIETY.ORG | 1-800-344-4867
MONEY MATTERS
NEW FINDINGS ON EMPLOYMENT & MS New studies funded by the National MS Society surveyed people with multiple sclerosis to explore whether the Americans with Disabilities Act (ADA) has improved employment issues for people with MS. The results of these studies, published in Work (November 2015), may help provide data to influence public policy and offer practical ways to address employment concerns.
and psychosocial factors. Respondents indicated a higher quality of life with increased education levels, employment status and job satisfaction.
IDENTIFYING ISSUES
FINDING SOLUTIONS
In one study, less than 40 percent of 1,924 people with MS who responded to a questionnaire were paid employees at the time, even though 98 percent had a history of working and 82 percent were working at the time of their diagnosis.
The researchers, led by Phillip Rumrill, Jr., PhD, (Kent State University) suggest that employers work with rehabilitation professionals to determine how accommodations can enable people with MS to stay in their current jobs and that support be provided when reassignment to a new position becomes necessary.
The respondents said they were not satisfied with current employment policies and practices in these areas: • disclosing disability status; • discussing job accommodation needs with employers; • requesting a review of accommodation needs without fear of retaliation; • understanding ADA employment protections; • exploring reassignment to other positions within the same company; and • understanding the Affordable Care Act (ACA) and how it relates to employee benefits. Researchers then sent a second questionnaire to the same group to determine relationships between quality of life and illness, and employment
THE DECISION TO DISCLOSE MS AT WORK CAN BE DIFFICULT
The Society offers many employment-related resources, including a webinar, “Navigating Career Change: Working with MS is Possible!” at nationalMSsociety.org/telelearning. Or visit nationalMSsociety.org/employment for guides to disclosure decisions and accommodations in the workplace, a video series and toolkit on managing MS in the workplace, a video for employers on managing MS in the workplace, and more. For referrals or assistance with employment, benefits, or health insurance concerns, call an MS Navigator at 1-800-344-4867. n
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STRATERA On Saturday, April 30, Team Statera (David Richardson, Kyra Felton, Tobi Nguyen, Emily Berkley, Ryan Beaver, and Rachel Adamos) from the VCU da Vinci Center showcased an early prototype for the Statera exercise app with eager Walk MS participants. At the beginning of the semester, the Virginia-West Virginia Chapter of the National Multiple Sclerosis Society (NMSS) partnered with the Center to find a way to help people with MS exercise in their everyday lives. The Statera exercise app was envisioned to help people with MS create and maintain self-empowering, habit-forming, and consistent exercise regimens. Research shows that exercise is not only beneficial to people with MS, but for other health conditions as well. Some of the features of the Statera exercise app would include abilities to create personalized templates for long and short term goals, record and report symptoms, use timers to track the duration of exercise activities, offer inapp incentives, and display progress and share it with others. Throughout the day, walk participants with MS could take a short survey about their current diagnosis, how they perceived the app would function, and their experience with exercise. The
team collected 16 responses from walk participants during the event. Along with other feedback, the survey data has been very positive. The feedback and insight will be used to guide the direction of the app going forward. Although the entire da Vinci team is graduating in a few weeks, Team Statera and the Virginia-West Virginia Chapter are looking into partnerships throughout Richmond and within the NMSS to bring the app to its initial development stages outside the scope of the da Vinci Center’s semester-long capstone project. Team Statera thanks you for all your support! If you would like to stay updated on the app, please follow us on Facebook: https://www.facebook.com/StateraMSapp/
NATIONALMSSOCIETY.ORG | 1-800-344-4867
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RESEARCH
A RARE GLIMPSE A new study provides a rare glimpse into the very early stages of multiple sclerosis, even before symptoms begin. What’s known as clinically isolated syndrome, or CIS, describes a first episode of neurologic symptoms that lasts at least 24 hours and is caused by inflammation and demyelination on one or more sites on the brain and spinal cord. Typically if an MRI scan reveals lesions similar to those seen in MS, the likelihood is higher that the person experiencing CIS will go on to develop MS; conversely, if CIS is not accompanied by MRI-detected lesions, he or she has a lower likelihood of developing MS.
A “SILENT” SYNDROME Some people have been found to have clinically “silent” lesions, meaning that while they aren’t experiencing symptoms, doctors have discovered areas of inflamed or damaged tissue during the course of an MRI scan that the person had for unrelated reasons. Researchers have been increasingly focusing on this phenomenon, called “radiologically isolated syndrome,” or RIS, which—like CIS—may or may not develop into definite MS. The study, which was published in Annals of Neurology (December 2015), examined MRI scans of 453 people with RIS. Of this group, 128 (28 percent) went on to develop a first neurological event consistent with CIS or
STUDIES USING MRI SCANS MAY HELP IDENTIFY MS EARLIER. relapsing MS while approximately 12 percent went on to develop primary progressive MS, which mirrors the frequency of developing this form of the disease as seen in other studies. Those who developed primary progressive MS were more likely to be men, were significantly older, and were more likely to have MS-like lesions in the spinal cord compared to those who went on to develop CIS or relapsingremitting MS. This research may help eventually point the way to finding ways to identify and track primary progressive MS earlier. This in turn may help to improve access to care for those living with primary progressive MS. To learn more, visit nationalMSsociety.org and search for “diagnosing MS.” Stay up to date on MS research by signing up for MS eNews: go to nationalMSsociety.org/signup. n Clinical trials of specific disease-modifying therapies (DMTs) have led to approvals for their use to treat CIS. However, there is debate as to whether people with RIS would benefit from early treatment with DMTs.
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COMMUNITY CALENDAR
PROGRAMS IN THIS SECTION ARE NOT ORGANIZED BY THE NATIONAL MS SOCIETY.
EASTERN VIRGINIA MULTIPLE SCLEROSIS EDUCATIONAL GROUP
Fourth Tuesday of the Month 5:30 pm 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. Riverside Medical Office Building, 12200 Warwick Blvd., Newport News, VA 23601 Neurosciences Conference Room The group is offered by Riverside Center for Neurosciences and meets on an ongoing basis. For information call 757-875-7880.
SENTARA PRINCESS ANNE MS SUPPORT GROUP
Third Thursday of the Month 5 - 6pm Sentara Neurology Specialists 1950 Glenn Mitchell Drive, Suite 200, Virginia Beach, VA 23456 Dr. Michelle Kuczma’s MS Group Patient Facilitator: Merrily Allen Jackson For more information, please call 757-507-0604.
MS NIMOS MS NUTS IN MOTION OF SUFFOLK
Fourth Tuesday of the Month 12:30 – 2pm Bon Secours Health Center, 2nd floor Conference Room 5818 Harbor View Blvd Suffolk, VA 23435 Leader: Patrice Beale 757-372-1401 patricelb@icloud.com Cheryl Scott Cherylascott@cox.net
WE ARE MS WINNERS
First Thursday of the Month 5:30 – 7pm Riverside Doctor’s Hospital 1500 Commonwealth Avenue, Williamsburg, VA 23185 Leader: Jeanette Ashlock 757-968-7358 wearemswinners@gmail.com
CENTRAL VIRGINIA BON SECOURS MULTIPLE SCLEROSIS SUPPORT GROUP Second Thursday of the Month 6:30 – 8pm
NATIONALMSSOCIETY.ORG | 1-800-344-4867
COMMUNITY CALENDAR St. Francis Hospital Cancer Center Conference Room, First floor. 14051 St Francis Boulevard, Midlothian, VA 23114 Leader: Nick Canderelli ncander64@msn.com
BON SECOURS MULTIPLE SCLEROSIS SUPPORT GROUP Third Monday of the Month 1 – 2pm Memorial Regional Medical Center MOB 1, Community Conference Room, First floor 8260 Atlee Road, Mechanicsville, VA 23116 Leader: Kimberly Pinna Kimberly.pinna@bshsi.org
POSITIVELY MOVING MS FORWARD
Third Monday of the Month 6:30 – 8pm Chester Presbyterian Church 3424 W. Hundred Road Chester, VA 23831 Leader: Crystine Baynard Webmaster/Email Contact Rashad Stone rashadstone@comcast.net
WESTERN VIRGINIA VALLEY HEALTH AND WELLNESS CENTER SUPPORT GROUP First Friday of the Month 6 pm Valley Health Wellness Center (Conference Room A) 401 Campus Blvd, Winchester, VA 22601 Leader: Betsy 540-327-3967 or winchestermsgroup@yahoo.com
ROANOKE VALLEY MS SUPPORT GROUP
Fourth Thursday of the month 6:30- 8 pm Roanoke Valley Association of Realtors (RVAR) 4358 Starkey Road, Roanoke VA Leader: Suzanne 540-404-1167
WINCHESTER, VA SUPPORT GROUP
First Friday of the Month 6:00 – 7:30pm Valley Health Wellness and Fitness Center 401 Campus Blvd, Winchester, VA 22601 (Conference Rm A)
Leader: Betsy 540-327-39670.0938 in
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MS CONNECTION: SUMMER 2016
SELF HELP GROUP LISTING FOR MORE INFORMATION CONTACT 1-800-344-4867 UNLESS OTHERWISE NOTED. EASTERN VIRGINIA
CENTRAL VIRGINIA
Tappahannock Neurological Support
Tuckahoe Morning Group MS & Neurological Support
Second Monday: 10:30 am Beale Baptist Church Leader: Sharon 804-580-7315 Joan 804-443-9226
Chesapeake Group
Third Tuesday: 7 pm Lifestyle Fitness Center at Chesapeake Regional Medical Center 800 N. Battlefield Blvd., Chesapeake, VA Leader: Margie 757-482-3247
Suffolk Group
Third Wednesday: 6:30-8 pm Magnolia United Methodist Church 1764 Wilroy Road, Suffolk, VA Leader: Willie Ann 757-539-0139
Southside Group
(Call for full list of Dates & Locations) Fourth Wednesday: 3-4:30 pm Meyera E. Oberndorf Central Library 4100 Virginia Beach Blvd., Va. Bch. Leader: Peter 757-671-1971
Gloucester Group
First Wednesday: 10:30 am-12:30 pm Riverside Wellness and Fitness Center 7516 Hospital Drive, Gloucester, VA Leader: Barbara 804-695-9950
African American Inspirational Group
First Thursday: 11 am Hampton Public Library, 936 Big Bethel Road Leader: D’Andre 757-660-3455 VeeGee 757-696-2540 Peninsula Evening Group Second Thursday: 5:30 pm
Sentara Careplex Hospital
(York River Entrance, Conf. Rm. C) 3000 Coliseum Drive, Hampton, VA Leader: Kendrick 757-408-9751 Diana 757-358-0284
Second Monday: 10:15-11:30 am Tuckahoe YMCA, 9211 Patterson Ave, Henrico, VA Leader: Darlene 804-346-2040
Hopewell Group
Second Thursday: 10-11:30 am River View on the Appomattox (201 Eppes St.) Leader: Melanie 804-526-9129
Petersburg Evening Group
Third Thursday: 6-8 pm Southside Regional Hospital, Third Flr Classroom Leader: Quennette 434-246-6007, 804-731-9069
Smyelin MS Support Group (Chesterfield) Third Wednesday: 12-2 pm Shoney’s in Oxbridge Square 9963 Hull Street Rd, Richmond, VA 23236 Leaders: Sheila 804-739-8488 Sharon 804-794-7589
South Hill Empowerment Group
Third Thursday: 5:30-7:30 pm Community Memorial Health Center 125 Buena Vista Circle Leader: Starr 434-378-2031
Richmond Weekend Group
Second Saturday: 11:30 am-1 pm HealthSouth Classroom, 5700 Fitzhugh Ave. Leader: Lorenzo 804-921-9712
Richmond (VA Home)
*For those with advanced MS Every Monday: 11 am 1101 Hampton St. Leader: Judi 804-359-4093
The Invincibles
Third Tuesday: 7-8:30 pm HealthSouth Fredericksburg, 300 Park Hill Drive Leader: Belinda 540-373-4377
MS Options Support Group
Second Tuesday: 12-1 pm Meadows Presbyterian Church 2200 Angus Road, Charlottesville, VA Leader: Lisa 434-296-5964
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NATIONALMSSOCIETY.ORG | 1-800-344-4867 MS Lunch Bunch
Twin County MS Support Group
Care Partner Support Group
WEST VIRGINIA
Fourth Thursday: 11:30 am-1 pm Martha Jefferson House, 1600 Gordon Ave, Charlottesville, VA Leader: Kitty 434-293-3573 Fourth Saturday: 2-4pm HealthSouth Rehabilitation Hospital 515 Ray C. Hunt Drive, Charlottesville, VA Leader: Ray 434-962-5643
Lynchburg Self Help Group Third Thursday: 6- 8 pm StoneGate Villa 106 Salisbury Circle Lynchburg, VA 24502 Leader: Diana 434-485-6558
SOUTH WESTERN VIRGINIA Roanoke Day Group
Second Tuesday: 1:30- 3 pm Rebos Club, 4231 Garst Mill Road, Roanoke VA Leader : Lew 540-312-0388
Lexington/Rockbridge Self Help Group Second Thursday: 5:30 pm-7 pm RE Lee Memorial Church (Library) 123 W Washington St, Lexington City, VA Leader: Susan 540-460-7091
New River Valley Support Group
First Tuesday: 6:30-8 pm Montgomery County Dept. of Social Services 210 Pepper St S, Ste B, Christiansburg, VA Leader: Jeff 540-230-3430
Smith Mountain Lake Self Help Group
Second Tuesday: 7 pm Carroll County Public Library 101 Beaver Dam Rd. , Hillsville Leader: Regina 276-766-9228
Made Strong Support Group
Third Thursday: 6-7:30 pm 200 Fernandez Drive, Beckley, WV Leader: Melinda 304-890-6284
Bluefield/Princeton Support Group Fourth Tuesday: 7 pm Call for location (Bluefield, WV) Leader: Doug 304-753-9126
Women’s MS Support Group
Second Monday: 7 pm Emmanuel Baptist Church 1401 Washington Street , W. Charleston, WV Leader: Jan 304-744-1994
Huntington Group
First Tuesday: 6-8 pm Edwards Comprehensive Cancer Center 2nd Floor Conference Room 1400 Hal Greer Blvd., Huntington, WV
Huntington MS Support Group
Third Thursday at 6 pm Health South Rehabilitation Hospital 6900 W. Country Club Drive, Huntington, WV 25705 First Floor Conference Room Leader: Jody 304-710-0829
First Wednesday: 12-1 p.m. 15353 Moneta Rd, Moneta, VA Leader: Ken 540-576-3330 (Does not meeting months that have a J).
ADDITIONAL SUPPORT OPPORTUNITIES ON THE PHONE
Augusta County MS Support Group
MSFriends: Peer Telephone Support 866-673-7436, 9 am–Midnight ET
Third Thursday: 6-8 pm Shenandoah Nursing & Rehab Center 339 Westminister Dr, Fisherville, VA Leader: Sandra 540-294-3063 Co-Leader: Cheryl 804-678- 8280
Peer Assisted and Led Support Group (PALS) Second Monday: 6:15 pm 1820 Heritage Center Way, Harrisonburg, VA Leader: Carol 540-432-9858
CHAT ROOM & BOARDS MSWorld- www.MSworld.org
ONLINE PEER CONNECTIONS 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).
National Multiple Sclerosis Society Virginia West Virginia Chapter 4200 Innslake Drive Suite 301 Glen Allen, VA 23060
STAY CONNECTED THIS SUMMER! For Chapter Related: #NMSSVAWV For Walk MS: #WalkMSVAWV For Bike MS: #ColonialCrossroads #BikeMSCRR
PEOPLE AFFECTED BY MS CAN LIVE THEIR BEST LIVES AS WE STOP MS IN ITS TRACKS, RESTORE WHAT HAS BEEN LOST AND END MS FOREVER.