CENTRAL VIRGINIA CHAPTER
MS CONNECTION MOVING TOWARD A WORLD FREE OF MS
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SPRING 2012
our knowledge, and hope, and exdestroys connections inside us. perience, we can gain a new understanding of how to move forward.
MULTIPLE
SCLEROSIS
It disconnects the mind from the body and people from each other. But what if we could defy this disease with the very thing it seeks to destroy: connections? Would we share more knowledge? More questions? More answers? More hope? Maybe, by connecting enough small victories, we could win some really big ones.
CONNECT WITH OTHERS Starting March 12th, you'll be able to make meaningful connections when, where and how you want with easy access to the best content and resources the MS community can bring you. You'll learn about the topics that are most important to you, connect with people you want to connect with, and have expert MS information and opinions right at your fingertips.
What if everyone living with MS could connect with one another? With those who care for someone living with MS? Or with those who research ways to stop, restore or end the disease? Or those who provide medical care or treat the symptoms of MS? Or the people who raise awareness and funds to help create a world free of MS?
SHARE WHAT YOU KNOW Find, store and share meaningful updates, posts, videos, articles and other content about the topics you care about most. Connect with people, groups and discussions that relate to the topics that shape your world. Join conversations with others who share your experiences, challenges, and interests, and put the best What if everyone who cares about resources available to work for you, MS could join together in one so you can move your life forward place? Maybe, by connecting all of in the way that feels right for you. Please visit MSConnection.org to check out the new MS Community. Once there, friend Jessica Ramirez to be added to the Central VA Chapter’s Online Group to connect with others in your area.
MSCONNECTION Central Virginia Chapter 4200 Innslake Dr., Suite 301 Glen Allen, VA 23060 804.353.5008 Www.moveVA.org BOARD OF TRUSTEES Chairman: Gregory R. Bishop Chairman Elect: Frank N. Cowan Treasurer: James E. Sok Secretary: Suzanne L. Gardner Matthew Austin Jennifer L.D. Bittmann Susan Bodin David Carminucci Sharon D. Hayes Mark Householder Ashley Johnson Glenn Nunziata John O’Bannon, MD
John O’Connor Unsong Oh, MD David Saunders Richard Schoepke Alan Shulman, MD Alexander H. Slaughter James VanNess Philip J. Wallin Kyle Yocom Gerald Zerkin
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 Tiffany Epley Development Manager - (804) 591-3036 Linda Pretlow Volunteer & Administrative Manager - (804) 591-3037 Jessica Ramirez Community Outreach Coordinator - (804) 591-3038 Matt Gregory Systems Administrator - (804) 591-3041 Diana Oakley Manager of Finance - (804) 591-3042 Melanie Hofe Finance Assistance - (804) 591-3031 Ashley Chapman 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.
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FROM THE CHAPTER PRESIDENT... Dear Friends, MS is all about connections. From the neurological connections damaged by the disease, to those personal connections impacted by the disease, from those fundraisers raising money for research to those researching damaged connections fighting to find a cure, connections define MS. The strong connections among family members who have a loved one that lives with MS provides a tremendous bond that helps overcome the challenges presented by the disease. Friends and coworkers also form connections that become closer when people they care about are coping with multiple sclerosis. How can you make a connection? Consider the choice of someone who hasn’t been on a bicycle since childhood to commit time and energy to train for, and then ride 150 miles over two days, while raising hundreds, even thousands of dollars in the process. Think about the emotional motivation needed for someone to choose to walk 30 miles in two days and to raise at least $1,500 dollars to earn the right to do so. What about the business who decides to sponsor an MS fundraising event or program, dedicating their resources to support the MS movement, because they know that the connection to the National MS Society will help build connections among their customers and their employees that can only help their performance in the marketplace.
Chapter President’s letter continued on page 4
WALK INTO SPRING! Walk season is here! Join us for fun, to increase awareness and to raise critical funds for MS Research and client programs
WALK MS: RICHMOND Saturday, April 21, 2012 Innsbrook MS Offices, 4200 Innslake Dr. Thank You to our SPONSORS!
Come out for Walk MS: Richmond 2.0 Cool features of the walk: New Smartphone scavenger hunt application along the route New “Tech” Tent where you can use smartphones and tablets Rock Band playing rock and roll hits at one of the rest stops
Be sure to register and start fundraising today at www.iwalkforMS.org. Questions? Contact Tiffany Epley at 804.591.3036 or tiffany.epley@nmss.org
WALK MS: FREDERICKSBURG Saturday, April 28, 2012 James Monroe High School Presented By:
Thank You to our SPONSORS!
You won’t want to miss this walk through historic Fredericksburg! New this year: New Smartphone scavenger hunt application along the route Rubicon Café & Jazzman’s Café providing coffee & pastries before the walk Large kid’s area Guest speaker: Miss Teen Spotsylvania, Sophia Ramsel
BE BOLD! Volunteer at the Fredericksburg Walk! To learn about the opportunities available, contact Linda Pretlow at 804.591.3037 or linda.pretlow@nmss.org 3
Continued from page 2 Forming new connections and partnering with others is the most powerful weapon we have in the fight against MS. The National MS Society regularly partners with individuals, businesses, media, and other organizations in order to advance our mission. No one organization can do it all. Delivering MS education, and health and wellness programs, direct services, and more is routinely accomplished by partnering with other organizations that possess expertise and capacity to get the job done efficiently. This holds true also for fundraising, where we partner with businesses and media outlets to spread the word and to recruit participants. And, of course, the volunteers and people who participate in Walk MS, Bike MS, MS Challenge Walk, and many other events are in many ways our closest partners. Every time we connect with someone new, it’s an opportunity to share what we know about MS, which can in turn help someone who has MS or aid in raising funds. What can you share? You can share what you know about living with MS that gets you through the day. You can share knowledge you’ve gained about navigating health insurance to get coverage for the treatment and care that you need. You can share the joyful experience that’s gained when we all come together at Walk MS, Bike MS, and MS Challenge Walk, and give others the chance to share in that moment.
PROGRAM CHALLENGES LEADERS TO RAISE FUNDS FOR THE NATIONAL MS SOCIETY The 2012 Corporate Achievers Campaign, formally known as the Leadership Class, kicked-off on March 20th. Held in the Greater Fredericksburg Region, the campaign recognizes top business and community leaders. This year’s honorees include: Megan Bergen, Rappahannock Goodwill Industries, Don Bowler, Centennial Broadcasting, Jimmy Franklin, Hope Springs Marina, Donna Street, Union First Market Bank, and Dr. Angela Tsai, Smart & Powell, P.C.
Each honoree is challenged to raise a minimum of $1,500 for the Central Virginia Chapter in a dynamic eight week period. Funds raised support programs and services the chapter provides to the 2,500 people living with MS in Central Virginia. At the end of the eight weeks, the honorees are The bottom line is “Share What You Know,” and presented with a distinguished award for their that act will build connections that will strengthen achievement. our movement, and will take us closer to a world Here’s to the 2012 honorees and a successfree of MS.
ful campaign! The Best is yet to come,
Sherri 4
Thank you to our presenting sponsor:
MS AWARENESS WEEK MS Awareness Week was March 12th through March 16th. Many chapters work with their communities to raise awareness about MS during this week. Some examples include swarming the Today Show in New York City, topping the Sears Tower in orange light in Chicago and lighting up the waterfalls in orange at Niagara Falls. Many people also get involved and raise awareness at the local level. Here at the Central Virginia Chapter, Halifax County Middle School supported their 6th grade teacher, Niagara Falls lit orange for MS awareness during MS Mrs. Karen Smith, in a big way. From hat day Awareness Week 2012 to wearing orange day, the school put something fun together to raise funds and awareness for MS. The week’s events were organized and promoted by the SCA in an effort to help Mrs. Karen Smith raise funds for the upcoming Walk MS: Richmond event on April 21. Check out the photos below of the great support from Halifax County Middle School.
This sea of orange was created by the students at HCMS who observed National MS Day by wearing orange.
Mrs. Karen Smith’s 6th grade honors English student Casey Pulliam surprised her and her class with a cake in celebration of National MS Awareness Day. Here Mrs. Smith is pictured with some of her students all dressed in orange! 5
irideforMS.org or CALL 804.591.3036
JOIN US FOR BIKE MS FROM RICHMOND TO WILLIAMSBURG!
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ROUTES OF 25, 50, 75, 100, 150, 175 MILES FULLY STOCKED REST STOPS SUPPORT VEHICLES ON THE ROUTE FINISH LINE CELEBRATIONS IN BOTH WILLIAMSBURG & RICHMOND
2 Days, 30 Miles Join us for the 10th Anniversary Capital Challenge Walk MS presented by Secor Group on Sept. 22-23, 2012 For more information & to register visit: www.moveVA.org and click on the Challenge Walk Button.
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JOIN US FOR OUR 2ND ANNUAL KIDS CAMP WEEKEND! 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 Refreshing Mountain Camp. Come join children from other chapters of the National Multiple Sclerosis Society for a weekend of swimming, zip lines 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 (3 days & 2 nights) Friday lunch and dinner 3 meals on Saturday & Sunday (Breakfast & Boxed Lunch) Use of the camp facilities Transportation to camp will be provided by the chapter. COST PER WEEKEND: $15 per child (ages 7-15) Scholarships are available upon request Space is LIMITED so register early!
Payment is expected with the completed application by June 18, 2012. QUESTIONS: If you have any questions about Kids Camp, please call Kathryn at the Central Virginia Chapter Office at 804-591-3039.
FRIDAY, JULY 27TH – SUNDAY, JULY 29TH, 2012 REFRESHING MOUNTAIN CAMP STEVENS, PENNSYLVANIA Located on 80 acres of woodland in beautiful Lancaster County Pennsylvania. The camp’s address is: 455 Camp Road Stevens, Pennsylvania 11
REGISTER TODAY FOR THE LINKS TELECONFERENCE SERIES, APRIL 3– MAY 29! We are pleased to present a FREE series of teleconferences on a variety of topics designed to link you with important information about living with MS. This series provides you and your loved ones eight opportunities to learn about MS from the comfort and privacy of your own home. Each teleconference is presented by an expert and the 2012 topics include: April 3, 2012: April 10, 2012: April 17, 2012: April 24, 2012: May 1, 2012: May 8, 2012: May 15, 2012: May 22,2012: May 29, 2012:
Health Insurance: Your Rights & Responsibilities All calls are Mental Gymnastics: The Power of the Mind to Hurt & Heal from 7:00pm – Improving Your Lifestyle through Financial Planning MS and Depression 8:00pm. At Home with MS – Adapting Your Environment Pain in MS Walking with MS: Fighting the Consequences of MS and Mobility Care Options: When Help if Needed MS Research Update
We ask that you register either online or by phone at least two weeks prior to the teleconference to ensure we can get the call-in information and any materials to you in a timely manner. We look forward to your participation! To register visit our website www.moveva.org (click on the calendar) or call 804-353-5008.
JOIN US FOR A DAY OF FUN AT THE PETERSBURG YMCA FOR MS FAMILY DAY!
Bring the whole family for: Crafts Fun family photo shoot Indoor pool Games Healthy snacks And much more!
Sunday, May 6, from 1-3 pm Petersburg YMCA 120 North Madison St., Petersburg, VA 23803 Locker rooms and the indoor pool will be available for the use of MS Family Day guests; however, workout equipment will be available for YMCA member use only. To register, visit our website www.moveVA.org (click on the calendar) or call 804.353.5008.
Our Chapter would like to thank the YMCA for graciously sponsoring this event.
SSI / SSDI Workshop
Do you have Multiple Sclerosis or Parkinson’s Disease & are currently employed? Are you considering applying for Supplemental Security Income or Social Security Disability Insurance benefits? Are you confused by the paperwork & need some extra assistance in tackling it? Have you been denied coverage and are not sure what to do next?
The objective of this workshop is to review the process and requirements to apply for SSI and SSDI benefits, and what to do if you are denied. The intended audience is individuals with MS or PD that are currently employed or have recently initiated the SSI/SSDI application process.
Date: Thursday, April 12, 2012 Time: 6:00 – 8:00 PM Location: Virginia Hospital and Healthcare Association (VHHA) Building NMSS Central VA Chapter 4200 Innslake Drive, Glen Allen, VA
Presenter: Barnard “Buzz” Hickok Resources for Independent Living Buzz is certified in both the Federal and State Work Incentive Act His areas of expertise are Work incentives, benefit planning, ticket to work program
Space is limited Please RSVP before April 5, 2012. There is no cost to attend this event, and light refreshments will be served To register, please contact either:
Kathryn Zapach NMSS – Central VA Chapter (804)591‐3039 or kathryn.zapach@nmss.org
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Andrea Perseghin VCU PD Center (804) 828‐3747 or pdcenter@vcu.edu
This workshop is brought to you by:
The presentation is supported in part by a grant from Medtronic.
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CENTRAL VIRGINIA CHAPTER’S NEW ONLINE SUPPORT GROUP, MY SOLUTIONS FOR MS , HELPS CONNECT YOUNG ADULTS LIVING WITH MS The Central Virginia Chapter invites people living with MS in their 20’s and 30’s to join a new, online based MS Support Group just for them! 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.
To become a member, visit: http://bit.ly/MySolutions (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.)
The Chapter’s newest MS support group connects young adults with one another via a private, Facebook group. MS is a disease that primarily affects young people in the prime of their lives. The group launched in January of this year with the intention of trying to connect with one of the most difficult populations living with MS to reach–young adults. Balancing school, careers, relationships and families alongside a chronic disease is challenging. The importance of having a group of peers who are living through the same symptoms can be a useful outlet. This is especially true because, no matter how many strong support systems one has in their life— spouses, families, friends, kids or even doctors— none of them necessarily understand what one living with MS is going through. This Facebook group allows a member to log on and post at any time of the day or night about any topic. The portability of an online group can provide a measure of support when a member has the need to vent or to ask a simple question. For more information about My Solutions or to become a member, please visit http://bit.ly/ MySolutions.
If you have any questions, please contact Jessica Ramirez at: jessica.ramirez@nmss.org or (804) 591-3038. 14
The Positive Thinkers 1st Wednesday - 11:30am Prairie Grain Bread Co. Village Market Place Midlothian Leaders: Gail (804)379-5493 Claudia (804)667-6445 Hanover Group 4th Thursday - 7-8:30pm Church of the Redeemer 8275 Meadowbridge Rd. Mechanicsville, VA 23116 Leader: Dana (804)550-2280
Chesterfield Day Group 3rd Wednesday - 12-1pm Johnston-Willis Hospital Board Room Leaders: Sheila (804)739-8488 Sharon (804)794-7589 Surry County Group 2nd Thursday at 11am Hope Christian Alternative (325 Banks St., Surry) Leader: Stephanie (757)267-2329 South Hill Empowerment Group 3rd Wednesday - 5:30-7:30pm Community Memorial Health Ctr (125 Buena Vista Circle) Leader: Starr (434) 378-2031
Petersburg Day Group 2nd Thursday - 10-11:30am River View - 201 Epps St. Hopewell Leader: Melanie (804)526-9129 Richmond Day Group 2nd Monday - 10:15-11:30am Tuckahoe YMCA (9211 Patterson Ave.) Petersburg Evening Group Leader: Barbara (804)747-0298 3rd Thursday - 6-8:00pm Southside Regional Hospital 3rd Floor Classroom Leader: Quennette (434) 246-6007 Group times and locations may vary, so be sure to check with (804) 731-9069 group leaders prior to attending!
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 Neuromuscular 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 15
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MS ACTIVISTS VISIT VIRGINIA’S CAPITOL TO RAISE MS AWARENESS The four Virginia Chapters of the National MS Society held our annual Legislative Action Day on January 30th. Over 40 volunteers from across the state gathered in Richmond to lobby their legisla- Central Virginia Advocates wearing orange tors on key issues that affect people living with MS, scarves specially made for them by the girls such as: health care reform, livable communities, of Miles of Scarves! Thanks girls! respite care for caregivers and funding for critical resources. If you are interested in being an MS Activist, and joining us for the 2013 General Assembly Session, please contact Kathryn Zapach at Kathryn.zapach@nmss.org.
KEEPING UP WITH HEALTH REFORM With various provisions of the Affordable Care Act (ACA) kicking in and legislative challenges to the ACA, it can be hard to keep up-particularly on the state level. Here are some Society-vetted sources for reliable and up-to-date information about the impact of the ACA in our area.
The federal government’s official site on the ACA at the www.healthcare.gov is the best source for hard numbers on the ACA. Click on “The Healthcare Law and You,” then “Implementation Resources” to view an interactive map of the U.S. Here you can click to see, for example, how many young adults are now insured in each state, the number of residents who no longer face a lifetime limit on their insurance coverage, the amount of new funds for community health centers and more. To follow the changes in ACA legislation and other public policy issues that specifically affect people with MS, check in with Society MS Activists at Twitter @MSActivist and visit www.MSactivist.blogspot.com. The Society also regularly updates FAQ’s on its website at www.nationalMSsociety.org/ACAFAQ as more is understood about how the law could impact people with MS. 17
2012 NATIONAL MS SOCIETY PUBLIC POLICY CONFERENCE: MS ACTIVISTS ON THE FRONTLINE
On March 5-7, 2012, a group of staff and volunteers from the Central Virginia Chapter attended the National MS Society’s 21st Annual MS Public Policy Conference in Washington, D.C. Our MS Activists spent two days learning about MS research programs and the need for federal funding and the importance of the Lifespan Respite Care Act. They joined over 300 MS Activists from across the country donning their orange and taking to Capitol Hill to meet with members of Congress to discuss these key issues that affect people living with MS. The National MS Society requested that: Congress support additional appropriations
to increase MS research funding in both the Congressionally Directed Medical Research Programs (CDMRP) and at the National Institutes of Health (NIH) Congress support caregivers by enhancing and extending the Lifespan Respite Care Program by providing $5 million in the Fis18
cal Year 2013 Labor/HHS/Education appropriations bill and to reauthorize the program by passing HR 3266, and Members raise awareness about Multiple Sclerosis by joining the Congressional MS Caucus or supporting MS Awareness week which was the week of March 12-16 The Congressional MS Caucus helps raise awareness and promotes education about MS. Our activists urged their legislators to support their Virginia constituents living with MS by joining this esteemed group of legislators. Congressman Robert Hurt agreed to join, bringing the total number of Virginia Caucus members to seven (7) – Gerald Connolly, Randy Forbes, Bob Goodlatte, Robert Hurt, Robert Wittman and Frank Wolf.
in the number of Representatives signing on to each letter. 155 Representatives signed on to a letter supporting at least $32 billion for the National Institutes of Health (NIH) in Fiscal Year 2013, 68 Representatives signed on to a letter supporting $10 million for MS research in the Congressionally Directed Medical Research Programs (CDMRP), and 33 Representatives signed on to a letter supporting $5 million for the Lifespan Respite Care Program. Members of Congress are listening to our concerns and taking action!
Immediate Success! It’s been about a month since our MS activists were on Capitol Hill urging support for MS research and family caregivers. In this short amount of time, three Dear Colleague letters, supporting our priorities, have been circulated in the U.S. House of Representatives and MS activists’ incredible work helped garner significant increases
Year-Round Engagement The Public Policy Conference is the kick-off to our federal advocacy year—but it is vital for MS activists to remain engaged year-round. Stay informed by signing up for our federal action alerts and monthly updates at www.nationalmssociety.org/msactivist, becoming a follower of our MS Activist blog http://www.msactivist.blogspot.com, and following our Twitter account, @MSActivist. And check in with your Congressional offices periodically to help build and maintain those relationships. Remember, MS kills connection—but connections kill MS!
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4200 Innslake Dr., Suite 301 Glen Allen, VA 23060
www.moveVA.org
UPCOMING PROGRAMS & EVENTS EVERY TUESDAY in APRIL & MAY 2012 LINKS Teleconference Series including topics such as: Health Insurance, Financial Planning, Depression & More! THURSDAY, APRIL 12 SSI/SSDI Workshop SATURDAY, APRIL 21 2012 Walk MS: Richmond SATURDAY, APRIL 28 2012 Walk MS: Fredericksburg SUNDAY, MAY 6 MS Family Day at the Petersburg YMCA SATURDAY & SUNDAY, JUNE 2-3 Bike MS FRIDAY-SUNDAY, JULY 27-29 MS Kids Camp
To register for or to get more information about these or other events, visit www.moveVA.org and click on the calendar.