CENTRAL VIRGINIA CHAPTER
MS CONNECTION MOVING TOWARD A WORLD FREE OF MS | SPRING 2013
MS AWARENESS WEEK MARCH 11-17TH, 2013 Chapters of the National MS Society are always looking for unique and innovative ways to raise awareness of multiple sclerosis, the local chapter and the National MS Society. MS Awareness Week is a week in March dedicated to concentrate awareness efforts across the country for one big impact. The Central Virginia Chapter joined in these national efforts by enlisting the help of local television news anchors on ABC, CBS, and NBC . The chapter sent anchors from all three media outlets a “goodie” bag filled with orange National MS Society gear—most notably, the anchors each were given an orange tie or an orange scarf. Because of their visibility in metroRichmond area, the chapter requested that the
anchors wear their tie or scarf during their live broadcasts to help raise awareness for this disease. Many of the anchors readily agreed and not only wore orange but also posted messages about MS Awareness Week on their personal Facebook page or Twitter account. A big shout-out goes to the anchors that agreed to Join the Movement® and wear their orange on air: Andrew Freiden, NBC; Sabrina Squire, NBC, Curt Autry, NBC; Diane Walker, NBC; Amy Lacey, WRIC; Morgan Dean, WRIC; Amie McLain, WRIC; Carrie Rose, CBS; Rob Cardwell, CBS; and Zach Daniel, CBS.
NBC12 anchors Sabrina Squire, wearing an orange MS bracelet & Curt Autry, wearing an orange MS tie, were among the 10 news anchors that wore orange in support of MS Awareness Week and the National MS Society.
STORY CONTINUED ON PAGE 5
INSIDE THIS ISSUE
STAFF SPOTLIGHT PAGE 6
STATE ACTION DAY PAGE 7
NEW ORAL DRUG PAGE 8
BIKE MS: A LOVE STORY PAGE 12
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MSCONNECTION
FROM THE CHAPTER STAFF
Central Virginia Chapter 4200 Innslake Dr., Suite 301 Glen Allen, VA 23060 804.353.5008 www.moveVA.org BOARD OF TRUSTEES Chairman: Frank N. Cowan Chairman Elect: Matthew L. Austin Treasurer: James E. Sok Secretary: Jeffrey Ruskan Sharon Barcalow Gregory Bishop Jennifer L.D. Bittmann Susan Bodin David Carminucci Charlie Colpo Brandon Haushalter Mark Householder Ashley Johnson Glenn Nunziata John O’Bannon, MD
John O’Connor Unsong Oh, MD David Saunders Richard Schoepke Daniel B. Shoop Alan Shulman, MD Alexander H. Slaughter Robert A. Vallejo James VanNess Philip J. Wallin Kyle Yocom
Pictured from left to right: Elyse Brantingham, Kasey O’Neill, Rick Holzbach, Matt Gregory, Jessica Ramirez, Omari Easton, Sherri Ellis, Robert McKoy, Alex Caballero, Diana Oakley, Ashley Chapman and Kathryn Zapach. Not Pictured: Clare Lorio, Tiffany Epley & Deborah Richards
STAFF Sherri Ellis Chapter President - (804) 591-3030 Robert McKoy VP of Operations - (443) 641-1206 Kathryn Zapach Director of Programs & Services - (804) 591-3039 Rick Holzbach Director of Development- (804) 591-3031 Tiffany Epley Development Manager - (804) 591-3036 Jessica Ramirez Programs & Services Manager - (804) 591-3038 Clare Lorio Development Manager, Teams Specialist - (804) 591-3037 Matt Gregory Systems Administrator - (804) 591-3041 Diana Oakley Manager of Finance - (804) 591-3042 Deborah Richards Finance Assistant - (804) 591-3034 Ashley Chapman Senior VA Statewide Advocacy Manager - (804) 591-3048 * Please Note: these are direct phone numbers for staff. The Main Office phone number is still (804) 353-5008 or 1-800-FIGHT MS.
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.MoveVA.org or try our office phone at (804) 353-5008 to learn about ways to help manage Multiple Sclerosis and about current research that may one day reveal a cure.
Thank you for all you do to help us move together toward a world free of multiple sclerosis! MS stops people from moving. We exist to make sure it doesn’t.
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WALK MS: RICHMOND A big thank you goes out to all who participated in the Richmond Walk! We had 1,382 walkers and raised $162,500!
2013 WALK SEASON Spring is here, time to: Be Inspired. Get Connected. WALK MS. Make sure to register for one of the following walks!
WALK MS: FREDERICKSBURG WALK TO CREATE A WORLD FREE OF MULTIPLE SCLEROSIS
April 20, 2013 James Monroe High School 2300 Washington Avenue
WALK MS: KILMARNOCK NEW THIS YEAR
April 20, 2013 Grace Episcopal Church 303 S Main Street
Be sure to register and start fundraising today at:
www.iwalkforMS.org Questions or need more details? Contact Tiffany Epley at 804.591.3036 or tiffany.epley@nmss.org BE BOLD! WE NEED YOUR HELP! Volunteer at the walks or at other chapter events. To learn about the opportunities available, contact Deborah Richards at 804.591.3034 or Deborah.richards@nmss.org
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JOIN US FOR 2013 BIKE MS: RIDE VIRGINIA FROM RICHMOND TO WILLIAMSBURG! JUNE 1ST & 2ND, 2013
This is a 2-day, 150 mile event $300 minimum fundraising requirement, $55 registration fee Saturday ride to Williamsburg Sunday ride back to Richmond There is a 100 mile Century option on Saturday for those who want the challenge Not up to 150 miles? Ride a 25 or 50 mile loop in the Richmond area on Sunday with a $100 minimum fundraising requirement, $25 registration fee Ride as an individual or with a Team
REGISTER TODAY AT: WWW.irideforMS.ORG OR CALL 804.591.3036
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**NEW** THIS YEAR FOR BIKE MS! VIRTUAL BIKE MS AT SELECT YMCA LOCATIONS
spin class. Register at irideforMS.org for only $29.99!
Not up to riding on June 1st and 2nd? Become a virtual rider and fundraise only. OR Join the YMCA of Chester, Midlothian, Shady Grove or Tuckahoe on Sunday May 19th between 2:30 – 5:30 for a
All virtual riders and YMCA participant are invited to join the finish line festivities in Richmond on Sunday, June 2nd.
FEATURE STORY
MS AWARENESS WEEK (Continued from page 1) In addition to the media outreach, the chapter also petitioned local counties and cities for formal resolutions designating the second week in March as MS Awareness Week. The City of Richmond, Henrico County, Fredericksburg County, Hanover County and Chesterfield County all obliged and issued proclamations. Henrico and Fredericksburg County each presented a proclamation to chapter staff at Morgan Dean and Amie McLain from WRIC8 their board/council meetings. Thank you to everyone that showed their support for MS Awareness Week helped spread MS awareness. Did you participate in MS Awareness or do have ideas for 2014 MS Awareness Week? Email Jessica.ramirez@nmss.org with your pictures, stories and suggestions!
CBS News anchor Rob Cardwell showing his support by wearing Andrew Freiden , NBC12’s morning meteorologist wore his orange tie and gave a shout out to the chapter and MS Awareness Week. his orange tie.
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STAFF SPOTLIGHT
MEET OUR STAFF DEBORAH & CLARE DEBORAH RICHARDS
CLARE LORIO
”Team work, makes
”Humor is a great way to connect with people.”
a dream work.”
Finance Assistant & Volunteer Engagement Coordinator
Development Manager & Teams Specialist
Careers: Deborah works with the Central Virginia Chapter’s finances and coordinates volunteers for all of the chapter events. She also works at Cuore as a sales consultant for infomercial products. She is definitely a people’s person! Fun fact: Deborah loves fashion and interior design- but guess what else? She is a wedding singer. Curious to hear her sing? Me too! Hobby: Traveling is one of her favorite things to do. Deborah has vacationed to Barbados, Puerto Rico, St. Thomas, and St. Martins. Relaxing in tropical areas out in the sun by water is Deborah’s ideal trip. How she got involved with NMSS: Linda, one of Deborah’s friends, got her involved with the NMSS through volunteering. In previous years, she volunteered in Walk and Bike MS events. “If we all come together, we are capable of finding a cure for MS through working with our events like walks, bike, Women on the Move, and other various fundraisers,” says Deborah.
Experience: Working at the YMCA for over 17 years, Clare did a bit of everything. Her journey went from programs director to branch executive to senior programs director. She worked with board of managers, staff, and volunteers. She even helped open a YMCA in Williamsburg. Fun fact: Clare lives in York county- over an hour drive each way to and from work. Coffee and XM radio get her through the drive. What a trooper we have! Hobby: Clare’s 15 year old son, Dylan, plays soccer year round. Most of her free time is spent cheering on the sidelines. Clare is a typical, on the-go, soccer mom! Moving forward with NMSS: “Working with team captains, my goal is to increase teams for each event with new avenues of spreading the word of what we do, as well as support team captain walkers and bikers in their success in fundraising. This helps raise awareness and funds for the NMSS. I have such a passion for what I do, that I know I was called to work in the nonprofit sector,” Clare says.
Deborah will be celebrating her one year of working with the NMSS Central Virginia Chapter this upcoming May!
Interview by: Elyse Brantingham, Intern
Welcome Deborah & Clare! We are glad that you have Joined the Movement ®
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PROGRAMS
MS STATE ACTION DAY JANUARY 27-28 The State Capitol was a flood of orange as over 40 activists from across the Commonwealth gathered in Richmond to advocate for issues important to those living with multiple sclerosis. The four Virginia Chapters of the National MS Society held their annual State Action Day on Activists met with William J. Howell (28th District), January 28th. Activists lobbied their legislators Speaker of the Virginia House of Delegates. on key issues such as: increasing affordable access to prescription medication, expanding the with MS,” Elyse Brantingham, Chapter Marketstate Medicaid program, increasing access to ing Intern, said. Programs & Services Intern Kacare in rural areas , supporting livable communisey O’Neill agreed with the ties and funding critical “IT WAS REALLY NEAT TO BE sentiment adding, “It was resources for Virginia’s to communicate to my A PART OF SOMETHING easy most vulnerable citirepresentatives about the iszens. THAT HAS A GREATER sues I care about. The dele-
IMPACT [.]”
These issues can have a profound effect on not only people living with MS but also those living with any chronic disease. Central Virginia Chapter intern and a first time activist, found the whole experience powerful: “It was really neat to be a part of something that has a greater impact for those living
Activists met with Delegate Jimmie Massie, III who represents the 72nd District.
gates that we talked to seemed sincerely interested to hear what we had to say.” If you are interested in being an MS Activist, and joining us for the 2014 General Assembly Session, please contact Kathryn Zapach at Kathryn.zapach@nmss.org.
Activists met with Delegate Betsy Carr of the 69th District.
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FEATURE STORY
FDA APPROVES TECFIDERA® (FORMERLY CALLED BG-12)MAKING IT THE THIRD ORAL THERAPY FOR PEOPLE WITH MS The U.S. Food and Drug Administration has approved Tecfidera™ capsules (dimethyl fumarate, Biogen Idec –formerly “BG-12”) as a first-line disease-modifying therapy for people with relapsing forms of MS. This makes the third oral therapy approved for relapsing MS, and the tenth disease-modifying treatment available in the U.S. Tecfidera is expected to be available by prescription within a few days.
strides for people with progressive forms of MS, for whom there are fewer options.”
About Tecfidera: Multiple sclerosis involves immune system attacks against brain and spinal cord tissues. Although its exact mechanism of action is not known, Tecfidera is thought to inhibit immune cells and molecules, and may have anti-oxidant properties that could be protective “The approval of Tecfidera is an important exagainst damage to the brain and spinal cord. A pansion of therapeutic options, and increases chemically related comour ability to find effective “THE APPROVAL OF pound, called Fumaderm and tolerable treatment soTECFIDERA IS (dimethyl fumarate and lutions for individual patients,” said Bruce A. CoENCOURAGING NEWS FOR fumaric acid esters), has been used for decades in hen, MD, Professor, Davee PEOPLE WHO HAVE Germany to treat acute Department of Neurology and Clinical Neurosciences RELAPSING FORMS OF MS.” flare-ups of psoriasis. Tecfidera is a new, differat Northwestern Universient formulation of dimethyl fumarate that was ty’s Feinberg School of Medicine, and Chair of the National MS Society’s National Medical Ad- developed by Biogen Idec specifically for the visory Committee. “As with all newly-approved treatment of multiple sclerosis. treatments, we will learn more about the benefits and safety of Tecfidera over time,” he added. Potential benefits: Twice-daily Tecfidera was shown in clinical trials to significantly reduce re“The approval of Tecfidera is encouraging news lapses and disease activity on MRIs, and in one trial it reduced progression of disability. The for people who have relapsing forms of MS,” noted Timothy Coetzee, PhD, Chief Research Of- FDA’s approval was based largely on results of ficer at the National MS Society. “Having ten dis- two large-scale phase III studies of Tecfidera capease-modifying therapies available for relapsing sules, called DEFINE and CONFIRM, which were forms of MS further motivates us to gather the conducted in people with relapsing-remitting forces of the global community to make similar MS. The results were published in 2012.
MOVEVA.ORG | 1.804.353.5008 In the DEFINE trial, there was a significant reduction in the proportion of people on Tecfidera who experienced relapses at 2 years, compared with those on inactive placebo. For those on the approved twice-daily dose, 27% experienced relapses, versus 46% of those on placebo -- a 49% reduction in the risk of relapse. All secondary outcomes were also met in the Tecfidera groups, including significant impact on disease activity detected with MRI, and reduction in the risk of confirmed progression of disability (detected by the EDSS, a standard scale that measures disability). The proportion of those who progressed over two years was 16% for twice-daily Tecfidera versus 27% for placebo -a 38% reduction in risk of disability.
9 create a sensation of heat or itching and a red blush on the skin) and gastrointestinal events (such as diarrhea, nausea, and upper abdominal pain). During the clinical trials, up to 40% of participants experienced flushing, and some experienced gastrointestinal events. The incidence of these events was highest in the first month of treatment, decreasing thereafter. Tecfidera reduced blood lymphocyte (white blood cell) counts but no significant or severe infections were reported. Liver enzyme tests were elevated, but there were no reports of significant liver injury or liver failure.
Before starting treatment, the FDA recommends that a person’s health care provider assess a recent (within 6 months) blood cell In the CONFIRM trial, there was a significant count, and repeat the blood cell count annually reduction in the average annual number of MS thereafter. Before starting treatment with relapses (annualized relapse rate, or ARR) in the Tecfidera, women should talk to their health Tecfidera groups versus placebo. For those on care providers if they are pregnant or planning the approved twice-daily dose, ARR was reto become pregnant. duced by 44% versus placebo. Results in secondary endpoints included significant reducTaking a disease-modifying therapy is currently tions in disease activity the best way to reduce MS disease activity and on MRI and the propor- future deterioration. Selecting an MS therapy tion of patients experi- should be done by people with MS in collaboraencing relapses in the tion with their MS doctors, taking into account Tecfidera groups versus a variety of factors, including the effectiveness placebo. Disability pro- of any therapy they are currently using, and gression was not reweighing potential risks and benefits, costs and duced significantly in lifestyle factors. the Tecfidera groups compared to the place- For more information about support services bo group. provided by Biogen Idec, people can contact the company’s MS ActiveSource® Program. MS AcPotential risks and tiveSource is available by phone at 1-800-456screenings: The most 2255 or on the Web at common adverse ww.MSActiveSource.com. events experienced by The new oral therapy approved people taking Tecfidera for relapsing MS is made by during the trials were For more information or to view the full article, Biogen Idec. visit: www.national MSsociety.org. flushing (which can
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MS CONNECTION: SPRING 2013
PROGRAMS
2013 LINKS TELECONFERENCE SERIES We are 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 nine teleconferences held Tuesday nights (7-8 pm) from April 2 through May 28, 2013. Each teleconference lasts just one hour and is accessible via a toll-free number. You can ask questions or just listen to the information. Best of all, you can do so from the privacy of your own home. Participate in several calls or just the one that interests you. Register today for any of these calls at www.moveva.org or 804-353-5008.
Missed a call? Don’t worry, a recording of each call will be available at www.nationalMSsociety.org.
MOVEVA.ORG | 1.804.353.5008
PROGRAMS
JOIN US FOR OUR 3RD ANNUAL MS KIDS CAMP, AUGUST 15-18th! The National Multiple Sclerosis Society is pleased to extend an invitation to children (ages 7-15) of a parent or guardian who has multiple sclerosis, for a weekend of fun and learning at Camp Jumonville in Hopwood, Pennsylvania. Come join children from other chapters of the National Multiple Sclerosis Society for a weekend of swimming, high ropes and more. This special weekend offers a great opportunity for kids who have a parent or guardian with MS to connect with one another in a supportive environment. PACKAGE INCLUDES: Room accommodations (4 days & 3 nights) 9 meals & snacks Use of the camp facilities Transportation to camp will be provided by the chapter. COST PER WEEKEND: $25 per child (ages 7-15) SCHOLARSHIPS ARE AVAILABLE Space is LIMITED so register early!
Payment is expected with the completed application by July 1, 2013. If you would like an application for MS Kids Camp, please contact Kathryn by May 1 to request one: 804-591-3039 or Kathryn.Zapach@nmss.org.
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FEATURE STORY
A CENTRAL VIRGINIA CHAPTER BIKE MS 150 LOVE STORY brother Beau and cousin Rhonda who both live with MS. It was truly nothing more than a casual, friendly encounter, which is Darma, who was the reigning top fundraiser in typical and expected along the ride’s route. At that time, neither exchanged names and they 2008 and perennial VIP and Mike, 2012’s top fundraiser and regular VIP, met initially and ra- went off to their separate rides. It wasn’t until ther inconsequentially at the 2008 Bike MS Ride the evening’s events that Mike learned of Virginia event. Darma was captaining the B&R Darma’s top fundraiser status but more signifiRoad Warriors team for the fifth year, and it was cantly, a name to go with that cool jersey! Mike’s first time with Bike MS: Ride Virginia riding with the No Hills Gang. Their first ever meet- The following year was no different; the two teams made contact at the first rest stop and ing was on day one at the first rest stop as the two teams ended up parked next to each other. Darma’s team again wore those identifiable bike jerseys, and of course, Mike was in a USMC jerMike, a former Marine, donning the obvious choice of a USMC jersey, noticed the B&R Road sey! Mike greeted Darma by name this time and Warriors’ jerseys and decided to compliment the Darma, still unaware of Mike’s name, greeted team on their awesome bike jerseys. After some him simply with, “Hey, Marine!” Some small talk friendly exchange, Darma walked over to Mike ensued, he introduced her to one of his teamand without introductions, explained the mean- mates, and that was it for 2009. ing of the team name which is in honor of her In 2010, the story changed dramatically. Mike saw Darma and her team again on day one at the first rest stop and greeted her by name. Well, along with her “Hey, Marine” greeting came an unexpected hug. What Darma didn’t know was that three months prior, Mike had lost his wife of 26 years to cancer. During that embrace, Mike shared his sad news with Darma. Characteristic of Darma, she shared in Mike’s sorrow, stated how glad she was that he was still out riding for MS and added that she would check up on him later to see how he was doing. He thought that Two of Central Virginia Chapter’s top supporters and fundraisers from our annual Bike MS 150 Ride Virginia event, Darma Bennett and Mike Hull, tied the knot in October 2012. Had it not been for their love of cycling and participating in the MS Bike event, they may have never met.
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would be nice but near impossible since she still fundraising average per team member. They again took advantage of the Passport Program didn’t know his name. and rode the MS Cape Code Getaway with our former Director of Development, Judy Griffin, Five months later, to Mike’s surprise, he reand her daughter Jennifer. Mike has made this ceived a message from her via Facebook— ride a family event, introducing his daughter AlDarma followed through on her comment to lison and son-in-law Andy to the 2012 ride. check on him! Darma contacted the Central Virginia Chapter for some help in identifying the Marine whose name she didn’t know. Need- So when you’re riding in the 2013 Bike MS less to say, Darma and Mike connected and the event, be sure to give a shout out to the top rest is history. For the 2011 Bike MS Ride, they fundraisers, as Mike and Darma are among them sporting those identifiable B&R Road were our second and third place individual fundraisers and represented the Central Virginia Warrior jerseys, as we hope they continue to do for many years to come. –Congratulations and Chapter in the Passport Program for the Bike many well wishes to the newlyweds, Mike and Historic New Bern, North Carolina Ride. In Darma! The Chapter is honored to have played 2012, Mike joined the B&R Road Warriors a small role in bringing the happy couple towhere he and Darma were the first and third place individual fundraisers, and the team was gether, and we hope they continue to ride tooverall third in team fundraising and second in gether for many years to come!
EVERY CONNECTION COUNTS: WHY DO YOU CONNECT?
Visit www.MSConnection.org to share why you connect.
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MS CONNECTION: SPRING 2013 To benefit the Central Virginia Chapter of the National Multiple Sclerosis Society
Kilmarnock, September 18 | Richmond, September 19 | Fredericksburg, September 20 Get ready for Women on the Move 2013 and guest speaker, David Osmond. Ladies, be ready to swoon as David sings and shares his personal story of challenge, triumph and love. David has music running through his veins, literally. He's the 4th son of Alan Osmond, oldest of the performing Osmond Brothers, and began performing as the lead singer with his own brothers when he was only four years old, a group that evolved into the admired The Osmonds 2nd Generation. He was forced to put music on hold for several years, however, shortly after receiving a diagnosis of MS in 2006. Then, taking his father Alan as his model, who also lives with MS, David set his sights back on making music acknowledging that he may have MS, but MS does not have him. Now whether recording a song that stirs your soul while getting your toes tapping or rousing participants at a Women on the Move luncheon or speaking out with passion on a broad spectrum of platforms such as The Today Show to raise awareness and resources for the MS community, David inspires people whether or not they personally have MS themselves. In recognition of his support of the MS movement and work of the Society, he received the Society's Spirit of Life Award. The honor was made even more special because he had presented his father with the inaugural Spirit award in 2000.
Please come see David at one of our three Women on the Move events! For table sales and ticket information, contact: Tiffany Epley at tiffany.epley@nmss.org
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SUPPORTING THE MISSION
TOP FUNDRAISERS TOUR THE VCU MS RESEARCH LAB Through the NOW campaign—No Opportunity Wasted—the National MS Society has committed to raise $250 million by the end of 2015 for MS research. The NOW Campaign strives to stop MS in its tracks, restore the function that has been lost due to MS, and end MS forever. You may think these research initiatives are happening in faraway places, but they are in fact happening here at Virginia Commonwealth University! Researchers are looking into what causes MS, how to repair myelin that as been damaged, as well as what role the immune system plays in MS.
Dr. Jeff Dupree explaining technical aspects of research.
In February, the chapter and the MS researchers took time out to show our top fundraisers how the dollars directly impacts MS research. Participants were able to tour the research labs, ask questions to the researchers, and talk to Dr. Unsong Oh about his work in VCU’s MS Clinic. Interested in attending the next lab tour? Contact us for upcoming dates! For more information on MS research at VCU visit www.ms.vcu.edu.
The Central Virginia Chapter’s newest support group for people living with MS in their 20’s and 30’s!! As a My Solutions member you will:
Stay connected with other members everyday on our Facebook page, Share thoughts and participate in weekly discussion topics, Learn about MS related events happening in our area; and Develop new relationships, and make friends who, just like you, understand the daily challenges of being young with a Multiple Sclerosis diagnosis.
(PLEASE NOTE: This is a special group designed for younger adults under forty years of age. All participants will be screened by Chapter staff prior to full registration to ensure they comply with the age requirements.)
For more information or to sign up, visit: http://bit.ly/MySolutions or contact Jessica Ramirez at 804.591.3038 or Jessica.ramirez@nmss.org.
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PROGRAMS
CENTRAL VIRGINIA CHAPTER SELF-HELP GROUPS The National MS Society recognizes that self-help groups play a role in helping people affected by MS. They provide an avenue for connection, optimism, education, personal change, advocacy and friendship. Self-help groups are led by trained volunteers and the members determine the group’s purpose and meeting agendas. The groups view the Society as a source of information and support. Below is a listing of the official self-help groups sponsored by the National MS Society. Please contact a group leader in advance if you would like to attend as groups are sometimes cancelled or meeting times changed. If you do not find a group that is convenient to you, and you think you might like to start one, contact Jessica Ramirez at 804.591.3038 or Jessica.ramirez@nmss.org.
Hanover Group 4th Thursday - 7-8:30pm Church of the Redeemer 8275 Meadowbridge Rd. Mechanicsville, VA 23116 Leader: Dana (804)550-2280
Petersburg Day Group 2nd Thursday - 10-11:30am River View - 201 Epps St. Hopewell Leader: Melanie (804)526-9129
South Hill Empowerment Group
3rd Wednesday - 5:30-7:30pm 2nd Monday - 10:30am Community Memorial Health Ctr Call for location (125 Buena Vista Circle) Leaders: Leader: Starr (434) 378-2031 Margaret(804)472-4781 Pat (804)443-9657
Richmond Day Group The Invincibles 2nd Monday - 10:15-11:30am Tuckahoe YMCA 3rd Tuesday - 7-8:30pm (9211 Patterson Ave.) HealthSouth-Fredericksburg Leader: Barbara (804)747-0298 (300 Park Hill Drive) Leader: Belinda (540)373-4377
Petersburg Evening Group Richmond Evening Group 3rd Thursday - 6-8:00pm Southside Regional Hospital 3rd Floor Classroom Leader: Quennette (434) 246-6007 (804) 731-9069
2nd Thursday - 7:15-8:30pm HealthSouth - Classroom 5700 Fitzhugh Ave. Leader: Lorenzo (804)921-9712
Chesterfield Day Group
Richmond (VA Home)
3rd Wednesday - 12-1pm Johnston-Willis Hospital Board Room Leaders: Sheila (804)739-8488 Sharon (804)794-7589
Tappahannock Neuromuscular Support
My Solutions—Online, Facebook Support Group for Young Adults in their 20s & 30s To sign up, visit: http;//bit.ly/ MySolutions or Contact Jessica at (804) 591-3038
For people with advanced stages of MS Every Monday - 11am 1101 Hampton St. Leader: Judy (804)359-4093
GROUP TIMES AND LOCATIONS VARY, SO BE SURE TO CHECK WITH GROUP LEADERS PRIOR TO ATTENDING!
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LIVING WITH MS
WORKING WITH MS: THE LAW IS ON YOUR SIDE If you are working, or considering a return to the workforce, it is important to know that you have certain legal protections in the workplace. While this is not an exhaustive list of all the legal protections that might be available to you, it does include several of the most common laws that people with MS should familiarize themselves with in case they may need to be tapped into in the future. Americans with Disabilities Act (ADA) has several sections that are designed to protect people with disabilities from discrimination in a variety of settings. Title I deals with employment issues. The ADA applies to private-sector employers with 15 or more employees, state and local government employers, and the legislative branch of the federal government. The ADA is intended to allow employees equal access in the workplace and applies to job applicants, new employees, and employees who become impaired while employed. The ADA was recently amended to clarify who is considered an “individual with a disability” and certain conditions were listed in the final regulations. MS was included in that list; therefore the assumption is that someone with MS is protected by the ADA. Key components of the ADA apply to disclosure and accommodations. Simply put, the ADA states that an employee with a disability has to be able to perform the essential function on the job with or without reasonable accommodations. If a person does not require accommodations, there is no legal requirement to disclose. However, if accommodations are necessary, it’s the employee’s responsibility to disclose and ask for them. Employers can deny those accommodations if they deter
mine they will cause an “undue hardship” but that is decided on a case by case basis. Seeking and getting accommodations should be a dialog with management. Family and Medical Leave Act (FMLA) applies to employers with 50 or more employees. The employee needs to have been employed for one year and worked at least 1250 hours during that year. Under FMLA, the employee can request up to 12 weeks unpaid leave, during which time the employer still maintains benefits for that individual. FMLA is job-protected leave without pay so upon release from a doctor, the employee is to return to their previous position or a similar position with equivalent pay and responsibility. FMLA is available for the employee with a medical condition, or for a family member caring for a loved one with a medical condition. FMLA does not have to be taken all at once but can be taken in increments. If you are on FMLA your job will be there for you when you return. Consolidated Omnibus Budget Reconciliation Act (COBRA) provides for continuation of coverage for employees, their spouses and depend-
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MOVEVA.ORG | 1.804.353.5008 ents. The length of time a person can maintain COBRA varies depending on the qualifying event that triggered their option to elect their COBRA rights. Typically, the initial time period is 18 months. To be eligible for COBRA, that employer must have 20 or more employees and your employment ended, voluntarily or involuntarily, for reasons other than gross misconduct. Those insured through groups of fewer than 20 may have comparable rights under their state law. During COBRA, you are responsible for the full cost of the coverage plus the health plan can add an additional 2% administrative fee. Health Insurance Portability and Accountability Act (HIPAA) is an extensive law that also provides protections regarding health insurance, as well as the use of personal health information. One section of particular importance deals with exclusions for pre-existing conditions, although these will end by year 2014. Check with your employer, health plan, or other reliable source to make sure you are getting the
most out of these consumer protections. State laws may also afford persons with MS protections. These often cover employers not covered by Federal laws. Not all states have the laws discussed here so check with an attorney in the state where you work. More detailed information about these legal protections can be found at the following website: http:// www.nationalmssociety.org/living-withmultiple-sclerosis/employment/knowing-yourrights/index.aspx. Each law is enforced by a different agency so if you feel your rights in the workplace have been violated, it’s important to act quickly and get the help you need. The National MS Society can provide assistance and support regarding your employment questions. Call 1-800-344-4867 to speak with an MS Navigator. You can discuss disclosure issues, accommodation strategies, learn more about legal protections, and obtain referrals to other employment resources. Get educated, get informed, and get connected.
SUPPORTING THE MISSION
WALK MS: RICHMOND “SHAKING” IT UP—HARLEM STYLE No doubt by now, most are familiar with the “Harlem Shake” dance craze that involves a 30 second video of people making exaggerated dance moves. At this year’s Walk MS: Richmond, the Central Virginia Chapter decided to “shake” things up a bit by asking participants to dress in outrageous costumes and shake everything they have for a taping of the largest Harlem Shake at a Walk MS event. The result was a fun way to warm-up before the walk . Frank Cowan, Chairman of Central Virginia’s Board of Trustees, got things going with a solo dance at the beginning of the video. He was joined by hundreds of participants who all moved for Walk MS! To see the full video, please visit our Facebook pages at: www.facebook/MSCentralVA. Thank you to all who participated and to Madison+Main for producing this video!
4200 Innslake Dr., Suite 301 Glen Allen, VA 23060
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www.moveVA.org
UPCOMING PROGRAMS & EVENTS SATURDAY, APRIL 20 2013 Walk MS: Fredericksburg SATURDAY, APRIL 20 2013 Walk MS: Kilmarnock APRIL & MAY 2013 LINKS Teleconference Series SUNDAY, MAY 19 Virtual Bike MS: Select YMCA locations THURSDAY, MAY 29 2013 World MS Day SATURDAY & SUNDAY, JUNE 1-2 2013 Bike MS: Ride Virginia THURSDAY–SUNDAY, AUGUST 15-18 2013 Kids Camp
To register for or to get more information about these or other events, visit www.moveVA.org and click on the calendar.