20
MS CONNECTION MOVING TOWARD A WORLD FREE OF MS | SPRING 2013 CENTRAL VIRGINIA CHAPTER INSIDE THIS ISSUE MS AWARENESS WEEK MARCH 11-17TH, 2013 Chapters of the National MS So- ciety are always looking for unique and inno- vative ways to raise awareness of multiple scle- rosis, 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 metro- Richmond area, the chapter requested that the anchors wear their tie or scarf during their live broadcasts to help raise awareness for this dis- ease. 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. STORY CONTINUED ON PAGE 5 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. STAFF SPOTLIGHT STATE ACTION DAY NEW ORAL DRUG BIKE MS: A LOVE STORY PAGE 6 PAGE 7 PAGE 8 PAGE 12

MSConnection Spring 2013- Central VA Chapter

Embed Size (px)

DESCRIPTION

Central VA Chapter quarterly newsletter

Citation preview

MS CONNECTION MOVING TOWARD A WORLD FREE OF MS | SPRING 2013

CENTRAL VIRGINIA CHAPTER

INSIDE THIS ISSUE

MS AWARENESS WEEK MARCH 11-17TH, 2013

Chapters of the National MS So-ciety are always l o o k i n g f o r unique and inno-vative ways to raise awareness of multiple scle-rosis, 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 metro-Richmond area, the chapter requested that the

anchors wear their tie or scarf during their live broadcasts to help raise awareness for this dis-ease. 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.

STORY CONTINUED ON PAGE 5

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.

STAFF SPOTLIGHT STATE ACTION DAY NEW ORAL DRUG BIKE MS: A LOVE STORY PAGE 6 PAGE 7 PAGE 8 PAGE 12

FROM THE CHAPTER STAFF

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.

MSCONNECTION 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 John O’Connor Gregory Bishop Unsong Oh, MD Jennifer L.D. Bittmann David Saunders Susan Bodin Richard Schoepke David Carminucci Daniel B. Shoop Charlie Colpo Alan Shulman, MD Brandon Haushalter Alexander H. Slaughter Mark Householder Robert A. Vallejo Ashley Johnson James VanNess Glenn Nunziata Philip J. Wallin John O’Bannon, MD Kyle Yocom

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.

MS CONNECTION: SPRING 2013 2

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

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!

WALK MS: FREDERICKSBURG 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

2013 WALK SEASON Spring is here, time to:

Be Inspired. Get Connected. WALK MS. Make sure to register for one of the following walks!

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 [email protected]

WALK TO CREATE A WORLD FREE OF MULTIPLE SCLEROSIS

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 [email protected]

MOVEVA.ORG | 1.804.353.5008 3

MS CONNECTION: SPRING 2013 4

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

MOVEVA.ORG | 1.804.353.5008 5

FEATURE STORY

MS AWARENESS WEEK (Continued from page 1)

In addition to the media outreach, the chapter also peti-tioned local counties and cities for formal resolutions desig-nating 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 their board/council meetings. Thank you to everyone that helped spread MS awareness.

Did you participate in MS Awareness or do have ideas for 2014 MS Awareness Week? Email [email protected] with your pictures, stories and suggestions!

Andrew Freiden , NBC12’s morning meteorologist wore his orange tie and gave a shout out to the chapter and MS Awareness Week.

Morgan Dean and Amie McLain from WRIC8 showed their support for MS Awareness Week

CBS News anchor Rob Cardwell showing his support by wearing his orange tie.

**NEW** THIS YEAR FOR BIKE MS!

VIRTUAL BIKE MS AT SELECT YMCA LOCATIONS 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 19

th between 2:30 – 5:30 for a

spin class. Register at irideforMS.org for only $29.99! All virtual riders and YMCA participant are invited to join the fin-ish line festivities in Richmond on Sunday, June 2

nd.

STAFF SPOTLIGHT

MEET OUR STAFF DEBORAH & CLARE

MS CONNECTION: SPRING 2013 6

DEBORAH RICHARDS ”Team work, makes a dream work.”

Finance Assistant & Volunteer Engagement Coordinator

CLARE LORIO ”Humor is a great way to connect with people.”

Development Manager & Teams Specialist

Careers: Deborah works with the Central Virgin-ia Chapter’s finances and coordinates volunteers for all of the chapter events. She also works at Cuore as a sales consultant for infomercial prod-ucts. She is definitely a people’s person! Fun fact: Deborah loves fashion and interior de-sign- but guess what else? She is a wedding sing-er. 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 Debo-rah’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. Deborah will be celebrating her one year of working with the NMSS Central Virginia Chap-ter this upcoming May!

Experience: Working at the YMCA for over 17 years, Clare did a bit of everything. Her journey went from programs director to branch execu-tive 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 soc-cer 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 non-profit sector,” Clare says. Interview by: Elyse Brantingham, Intern

Welcome Deborah & Clare! We are glad that you have Joined the Movement ®

MOVEVA.ORG | 1.804.353.5008 7

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 January 28th. Activists lobbied their legislators on key issues such as: increasing affordable ac-cess to prescription medication, expanding the state Medicaid program, increasing access to care in rural areas , supporting livable communi-ties and funding critical resources for Virginia’s most vulnerable citi-zens. These issues can have a profound effect on not only people living with MS but also those living with any chronic dis-ease. Central Virginia Chapter intern and a first time activist, found the whole experience pow-erful: “It was really neat to be a part of some-thing that has a greater impact for those living

with MS,” Elyse Brantingham, Chapter Market-ing Intern, said. Programs & Services Intern Ka-

sey O’Neill agreed with the sentiment adding, “It was easy to communicate to my representatives about the is-sues I care about. The dele-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 Za-pach at [email protected].

Activists met with William J. Howell (28th District), Speaker of the Virginia House of Delegates.

Activists met with Delegate Jimmie Massie, III who represents the 72nd District.

Activists met with Delegate Betsy Carr of the 69th District.

“IT WAS REALLY NEAT TO BE A PART OF SOMETHING THAT HAS A GREATER

IMPACT [.]”

MS CONNECTION: SPRING 2013 8

The U.S. Food and Drug Administration has ap-proved Tecfidera™ capsules (dimethyl fumarate, Biogen Idec –formerly “BG-12”) as a first-line disease-modifying therapy for people with re-lapsing 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. “The approval of Tecfidera is an important ex-pansion of therapeutic options, and increases our ability to find effective and tolerable treatment so-lutions for individual pa-tients,” said Bruce A. Co-hen, MD, Professor, Davee Department of Neurology and Clinical Neurosciences at Northwestern Universi-ty’s Feinberg School of Medicine, and Chair of the National MS Society’s National Medical Ad-visory Committee. “As with all newly-approved treatments, we will learn more about the bene-fits and safety of Tecfidera over time,” he added. “The approval of Tecfidera is encouraging news for people who have relapsing forms of MS,” noted Timothy Coetzee, PhD, Chief Research Of-ficer at the National MS Society. “Having ten dis-ease-modifying therapies available for relapsing forms of MS further motivates us to gather the forces of the global community to make similar

strides for people with progressive forms of MS, for whom there are fewer options.” About Tecfidera: Multiple sclerosis involves im-mune system attacks against brain and spinal cord tissues. Although its exact mechanism of action is not known, Tecfidera is thought to in-hibit immune cells and molecules, and may have anti-oxidant properties that could be protective against damage to the brain and spinal cord. A

chemically related com-pound, called Fumaderm (dimethyl fumarate and fumaric acid esters), has been used for decades in Germany to treat acute flare-ups of psoriasis. Tecfidera is a new, differ-

ent formulation of dimethyl fumarate that was developed by Biogen Idec specifically for the treatment of multiple sclerosis. Potential benefits: Twice-daily Tecfidera was shown in clinical trials to significantly reduce re-lapses and disease activity on MRIs, and in one trial it reduced progression of disability. The FDA’s approval was based largely on results of two large-scale phase III studies of Tecfidera cap-sules, called DEFINE and CONFIRM, which were conducted in people with relapsing-remitting MS. The results were published in 2012.

FEATURE STORY FDA APPROVES TECFIDERA® (FORMERLY CALLED BG-12)MAKING IT THE THIRD ORAL THERAPY FOR PEOPLE WITH MS

“THE APPROVAL OF TECFIDERA IS

ENCOURAGING NEWS FOR PEOPLE WHO HAVE

RELAPSING FORMS OF MS.”

MOVEVA.ORG | 1.804.353.5008 9

In the DEFINE trial, there was a significant re-duction in the proportion of people on Tecfid-era who experienced relapses at 2 years, com-pared with those on inactive placebo. For those on the approved twice-daily dose, 27% experi-enced relapses, versus 46% of those on placebo -- a 49% reduction in the risk of relapse. All sec-ondary 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.

In the CONFIRM trial, there was a significant reduction in the average annual number of MS relapses (annualized relapse rate, or ARR) in the Tecfidera groups versus placebo. For those on the approved twice-daily dose, ARR was re-duced by 44% versus placebo. Results in sec-ondary endpoints included significant reduc-

tions in disease activity on MRI and the propor-tion of patients experi-encing relapses in the Tecfidera groups versus placebo. Disability pro-gression was not re-duced significantly in the Tecfidera groups compared to the place-bo group. Potential risks and screenings: The most common adverse events experienced by people taking Tecfidera during the trials were flushing (which can

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 ex-perienced gastrointestinal events. The incidence of these events was highest in the first month of treatment, decreasing thereafter. Tecfidera re-duced blood lymphocyte (white blood cell) counts but no significant or severe infections were reported. Liver enzyme tests were elevat-ed, but there were no reports of significant liver injury or liver failure. Before starting treatment, the FDA recom-mends that a person’s health care provider as-sess a recent (within 6 months) blood cell count, and repeat the blood cell count annually thereafter. Before starting treatment with Tecfidera, women should talk to their health care providers if they are pregnant or planning to become pregnant. Taking a disease-modifying therapy is currently the best way to reduce MS disease activity and future deterioration. Selecting an MS therapy should be done by people with MS in collabora-tion with their MS doctors, taking into account a variety of factors, including the effectiveness of any therapy they are currently using, and weighing potential risks and benefits, costs and lifestyle factors. For more information about support services provided by Biogen Idec, people can contact the company’s MS ActiveSource® Program. MS Ac-tiveSource is available by phone at 1-800-456-2255 or on the Web at ww.MSActiveSource.com.

For more information or to view the full article,

visit: www.national MSsociety.org.

The new oral therapy approved for relapsing MS is made by Biogen Idec.

MS CONNECTION: SPRING 2013 10

PROGRAMS 2013 LINKS TELECONFERENCE SERIES

We are pleased to present a series of teleconferences for clients with MS and their families enti-tled "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 ques-tions 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 11

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 par-ent or guardian who has multiple sclerosis, for a week-end of fun and learning at Camp Jumonville in Hopwood, Pennsylvania. Come join children from other chapters of the Nation-al Multiple Sclerosis Society for a weekend of swim-ming, high ropes and more. This special weekend of-fers 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 [email protected].

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. Darma, who was the reigning top fundraiser in 2008 and perennial VIP and Mike, 2012’s top fundraiser and regular VIP, met initially and ra-ther inconsequentially at the 2008 Bike MS Ride Virginia event. Darma was captaining the B&R Road Warriors team for the fifth year, and it was Mike’s first time with Bike MS: Ride Virginia rid-ing with the No Hills Gang. Their first ever meet-ing was on day one at the first rest stop as the two teams ended up parked next to each other. Mike, a former Marine, donning the obvious choice of a USMC jersey, noticed the B&R Road Warriors’ jerseys and decided to compliment the team on their awesome bike jerseys. After some friendly exchange, Darma walked over to Mike and without introductions, explained the mean-ing of the team name which is in honor of her

brother Beau and cousin Rhonda who both live with MS. It was truly nothing more than a casual, friendly encounter, which is typical and expected along the ride’s route. At that time, neither exchanged names and they went off to their separate rides. It wasn’t until the evening’s events that Mike learned of Darma’s top fundraiser status but more signifi-cantly, a name to go with that cool jersey! The following year was no different; the two teams made contact at the first rest stop and Darma’s team again wore those identifiable bike jerseys, and of course, Mike was in a USMC jer-sey! Mike greeted Darma by name this time and Darma, still unaware of Mike’s name, greeted him simply with, “Hey, Marine!” Some small talk ensued, he introduced her to one of his team-mates, and that was it for 2009. 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

MS CONNECTION: SPRING 2013 12

FEATURE STORY A CENTRAL VIRGINIA CHAPTER BIKE MS 150 LOVE STORY

MOVEVA.ORG | 1.804.353.5008 13

would be nice but near impossible since she still didn’t know his name. Five months later, to Mike’s surprise, he re-ceived a message from her via Facebook—Darma followed through on her comment to check on him! Darma contacted the Central Virginia Chapter for some help in identifying the Marine whose name she didn’t know. Need-less to say, Darma and Mike connected and the rest is history. For the 2011 Bike MS Ride, they were our second and third place individual fundraisers and represented the Central Virginia Chapter in the Passport Program for the Bike Historic New Bern, North Carolina Ride. In 2012, Mike joined the B&R Road Warriors where he and Darma were the first and third place individual fundraisers, and the team was overall third in team fundraising and second in

fundraising average per team member. They again took advantage of the Passport Program and rode the MS Cape Code Getaway with our former Director of Development, Judy Griffin, and her daughter Jennifer. Mike has made this ride a family event, introducing his daughter Al-lison and son-in-law Andy to the 2012 ride. So when you’re riding in the 2013 Bike MS event, be sure to give a shout out to the top fundraisers, as Mike and Darma are among them sporting those identifiable B&R Road Warrior jerseys, as we hope they continue to do for many years to come. –Congratulations and many well wishes to the newlyweds, Mike and Darma! The Chapter is honored to have played a small role in bringing the happy couple to-gether, and we hope they continue to ride to-gether for many years to come!

EVERY CONNECTION COUNTS: WHY DO YOU CONNECT?

Visit www.MSConnection.org to share why you connect.

MS CONNECTION: SPRING 2013 14

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 partici-pants at a Women on the Move luncheon or speaking out with passion on a broad spectrum of plat-forms such as The Today Show to raise awareness and resources for the MS community, David in-spires 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 [email protected]

To benefit the Central Virginia Chapter of the National Multiple Sclerosis Society

MOVEVA.ORG | 1.804.353.5008 15

SUPPORTING THE MISSION

TOP FUNDRAISERS TOUR THE VCU MS RESEARCH LAB Through the NOW campaign—No Opportunity Wasted—the Na-tional 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 fara-way places, but they are in fact happening here at Virginia Common-wealth University! Researchers are looking into what causes MS, how to repair myelin that as been damaged, as well as what role the immune sys-tem plays in MS. In February, the chapter and the MS researchers took time out to show our top fundraisers how the dollars directly impacts MS research. Partici-pants 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.

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.

For more information or to sign up, visit: http://bit.ly/MySolutions or contact Jessica Ramirez at 804.591.3038 or [email protected].

The Central Virginia Chap-ter’s newest support group for people living with MS in their 20’s and 30’s!!

(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.)

Dr. Jeff Dupree explaining technical aspects of research.

MS CONNECTION: SPRING 2013 16

MOVEVA.ORG | 1.804.353.5008 17

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 [email protected].

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

Petersburg Evening Group 3rd Thursday - 6-8:00pm Southside Regional Hospital 3rd Floor Classroom Leader: Quennette (434) 246-6007 (804) 731-9069

Chesterfield Day Group 3rd Wednesday - 12-1pm Johnston-Willis Hospital Board Room Leaders: Sheila (804)739-8488 Sharon (804)794-7589

South Hill Empowerment Group 3rd Wednesday - 5:30-7:30pm Community Memorial Health Ctr (125 Buena Vista Circle) Leader: Starr (434) 378-2031

Richmond Day Group 2nd Monday - 10:15-11:30am Tuckahoe YMCA (9211 Patterson Ave.) Leader: Barbara (804)747-0298

Richmond Evening Group 2nd Thursday - 7:15-8:30pm HealthSouth - Classroom 5700 Fitzhugh Ave. Leader: Lorenzo (804)921-9712

Richmond (VA Home) For people with advanced stages of MS Every Monday - 11am 1101 Hampton St. Leader: Judy (804)359-4093

Tappahannock Neuromus-cular Support 2nd Monday - 10:30am Call for location Leaders: Margaret(804)472-4781 Pat (804)443-9657

The Invincibles 3rd Tuesday - 7-8:30pm HealthSouth-Fredericksburg (300 Park Hill Drive) Leader: Belinda (540)373-4377

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

GROUP TIMES AND LOCATIONS VARY, SO BE SURE TO CHECK WITH GROUP LEADERS PRIOR TO ATTENDING!

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 pro-tections 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 sev-eral 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 gov-ernment 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 em-ployed. The ADA was recently amended to clari-fy who is considered an “individual with a disa-bility” 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 accommoda-tions. Simply put, the ADA states that an em-ployee 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 accommo-dations are necessary, it’s the employee’s respon-sibility 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 em-ployee 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 individ-ual. 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 po-sition with equivalent pay and responsibility. FMLA is available for the employee with a medi-cal 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 cover-age for employees, their spouses and depend-

MS CONNECTION: SPRING 2013 18

MOVEVA.ORG | 1.804.353.5008 19

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 involun-tarily, 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 pro-vides protections regarding health insurance, as well as the use of personal health infor-mation. One section of particular importance deals with exclusions for pre-existing condi-tions, 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 infor-mation about these legal protections can be found at the following website: http://www.nationalmssociety.org/living-with-multiple-sclerosis/employment/knowing-your-rights/index.aspx. Each law is enforced by a dif-ferent 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 ques-tions. Call 1-800-344-4867 to speak with an MS Navigator. You can discuss disclosure is-sues, 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 larg-est 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

www.moveVA.org

Find us on Facebook MSCentralVA Follow us on Twitter @MSCentralVA

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.