SPRING 2015 VIRGINIA - WEST VIRGINIA CHAPTER
MS CONNECTION NEWSLETTER National Multiple Sclerosis Society Virginia West Virginia Chapter
EXCITING NEWS BIKE MS PAGE 04 PAGE 02 INSIDE 03 07 14 THIS ISSUE MS AWARENESS WEEK— MARCH 2-8, 2015
BE INSPIRED. GET CONNECTED. WALK MS.
GOING SOMEPLACE NEW
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PARTNERS IN MULTIPLE SCLEROSIS CARE
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MS CONNECTION: SPRING 2015
CHAPTER NEWS
LETTER FROM THE PRESIDENT Dear Friends,
The excitement continues as I share great news with you regarding the Central & Eastern Virginia and Blue Ridge chapters of the National MS Society. The two chapters are joining together to form a new chapter called the Virginia - West Virginia Chapter. Your new chapter will now serve over 12,000 individuals with MS and their families throughout Virginia and West Virginia, as well as three counties in northeastern North Carolina and seven counties in southeastern Kentucky. I feel by combining the talents of our boards, staff and volunteers we can more effectively meet two goals: (1) to enhance programs, services, and advocacy opportunities for those living with MS, as well as their families; (2) to increase fundraising and improve operating efficiencies, so that more money can go towards research and stay local to fund our mission. We will have staff, volunteers and offices in Richmond, VA; Virginia Beach, VA; Charlottesville, VA; and Charleston, WV. My promise is to continue to offer education, support, services, and advocacy to and for Virginia and West Virginia residents and partner with local companies, volunteers, and organizations to ensure that fundraising activities like Bike MS, Walk MS, Women on the Move Luncheons, and Dinner of Champions are fruitful and grow. The staff and board of both chapters have worked closely together to discuss and plan for the wonderful opportunities that are in front of us. I am thrilled to tell you that our new chapter territory will host four bike rides, twenty walks, four corporate luncheons, and five corporate black tie dinners. There will also be many opportunities to be involved in awareness activities, volunteer, and participate through education, support, and advocacy programs. I am confident that the combined strengths of everyone who cares about those living with MS in Virginia and West Virginia will move us closer to the ultimate goal that we all share—a world free of MS. The best is yet to come, Sherri Ellis Chapter President
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CHAPTER NEWS
MS AWARENESS WEEK—MARCH 2-8, 2015
We are looking forward to partnering with you to help create more connections, deepen engagement, and increase impact across the MS Movement!
FUN WAYS TO RAISE AWARENESS: • • • • • •
Plan a fundraising night at a local restaurant and have the profits donated to the Chapter Organize a “Wear Orange” day at your work or school and have participants make a donation Conduct a Facebook campaign asking your friends to dedicate their status and/or profile picture Plan on sending out “orange” emails and include an MS Awareness Week tagline Write or visit your legislators and share how MS has touched your life Or think of your own creative MS Awareness activity
A LIST OF ACTIVITIES ACROSS OUR CHAPTER TERRITORY WILL BE POSTED ON OUR FACEBOOK PAGE!
Search for National MS Society Virginia West Virginia Chapter
Are you organizing an activity to increase awareness in your community? Please let us know so that we can add it to our list. Contact Jessica Ramirez at 804-591-3038 or jessica.ramirez@nmss.org.
NATIONAL MULTIPLE SCLEROSIS SOCIETY VIRGINIA - WEST VIRGINIA CHAPTER Main Office: 4200 Innslake Drive Suite 301 Glen Allen, VA 23060 1-800-344-4867 • www.MSVirginia.org Chairman: Gregory Bishop Chapter President: Sherri Ellis Design: Robyn M. Hirsch © 2015 National Multiple Sclerosis Society, Virginia - West Virginia Chapter
Information provided by the Society is based upon professional advice, published experience and expert opinion. Information provided in response to questions does not constitute therapeutic recommendations or prescriptions. The National MS Society recommends that all questions and information be discussed with a personal physician. The Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The Society assumes no liability for the use or contents of any product or service mentioned.
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MSMSCONNECTION: CONNECTION:SUMMER SPRING 2014 2015
EVENTS
IT’S TIME TO GEAR UP FOR BIKE MS
THIS SPRING, WE ARE OFFERING 3 EXTRAORDINARY BIKE MS RIDES! It is hard to believe, but warmer weather is coming. And that means it is time to dust off the bike and start training for Bike MS. No more date conflict excuses because we have 3 different Bike MS rides on 3 different weekends for you to choose from in the Spring of 2015.
BIKE MS: VIRGINIA’S OCEAN TO BAY RIDE CELEBRATING ITS 35TH ANNIVERSARY Date(s): May 30-31, 2015 • Start/Finish Location: Cape Charles, VA Location: Cyclists will love the flat terrain as they travel through the quaint towns, pedal through corn fields, and experience the serene beauty of the Shore. Route Options: One (Saturday): 60 miles; Two Days; 36, 75 and 100 each day Registration: $45 plus accommodations
BIKE MS: RIDE VIRGINIA CELEBRATING ITS 30TH ANNIVERSARY PRESENTED BY PAGE AUTO GROUP Date(s): June 6-7, 2015 • Start/Finish Location: Richmond, VA Location: Enjoy the beautiful roads winding through the heart of Virginia as you pedal past historic sites and rustic farmlands. Route Options: Two Day: 75 or 100 miles each day; One Day: 25 or 50 miles Sunday Registration: $45 plus accommodations
BIKE MS: TOUR DE VINE Date(s): June 13-14, 2015 • Start/Finish Location: Pollak Vineyard - Greenwood, VA Location: Enjoy the majestic roads of the Blue Ridge Mountains as you cycle on rolling hills past vineyards and beautiful country estates. Route Options: Two Day: 25, 50, 75 or 100 mile loops available each day Registration: $25 plus accommodations All three of rides are designed to provide a scenic, challenging ride for both the experienced cyclist and the energetic novice. Routes are fully supported routes with rest stops, Support and Gear (SAG) vehicles, medics and bike support. Register online at bikeMS.org or by phone by contacting Bike MS Director, Karla McCarraher at 757-319-4253. Participants must be 18 or older and collect $300 in donations.
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AWARENESS ACTIVITIES
PROGRAMS
NORFOLK ADMIRALS SAVE THE DATE MS AWARENESS FOR 2015 MS NIGHT KIDS CAMP Come out and join us on Friday, March 6, 2015 for our third annual MS Awareness Night with the Norfolk Admirals— and don’t forget to wear orange! Advanced tickets are available online through March 6th at the reduced price of $12 by using group code kurtz12. A portion of every ticket sold through our group code will come back to the chapter, so spread the word to your family, friends, and co-workers.
JULY 24-26, 2015
For more information, contact Robyn Hirsch at 757-319-4252 or robyn.hirsch@nmss.org.
For a brochure or more information, please contact Kathryn Zapach at 804-591-3039 or kathryn.zapach@nmss.org.
JOHN KURTZ, LEFT WING FOR THE NORFOLK ADMIRALS
John, whose father lives with MS, hopes to increase awareness and support for those living with MS, as well as their families, by using his athletic status and voice in the community. He has also raised the bar by offering a donation to the Chapter for every Admirals win.
We are pleased to extend an invitation, to children ages 7-15 of a parent or guardian living with multiple sclerosis, for a weekend of fun and learning at Skycroft in Middletown, Maryland. Skycroft is a new location for our fifth annual camp, and we are excited for the camp’s mountain views, big water slide, and adventure games! Check out more information about Skycroft at www.Skycroft.org.
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MS CONNECTION: SPRING 2015
ADVOCACY
MS ACTION DAY AT THE GENERAL ASSEMBLY On January 26, over 40 activists from across the Commonwealth made their annual trip to Richmond to visit the General Assembly to advocate for issues important to those living with multiple sclerosis. The Virginia Chapters of the National MS Society sent representatives to meet with their legislators on key issues such as: increasing affordable access to prescription medication, expanding the state Medicaid program, streamlining the pre-authorization process set by insurance companies and revamping hospital discharge procedures to be more inclusive of family caregivers. After being trained on the issues, volunteers made over 100 visits to legislative offices to ensure policy makers are aware of the above-mentioned issues and how anyone faced with a chronic illness or physical disability would benefit from this legislation. Those who could not physically make it to State Action Day participated virtually by blogging, emailing or posting about our advocacy efforts on social media. With modern technology, advocacy can happen anywhere! However, our MS Activists’ work is not done. 20 activists will be volunteering their time to make over 30 visits at the West Virginia Legislature on February 27 to discuss with law makers the need for health care transparency and network adequacy. Volunteers from all over West Virginia will be visiting with their own elected officials as well as key policy makers to help improve health care access for all West Virginians. Whether law makers are in their capital offices in session or in their home districts, MS Activists are still needed to make visits, write letters to the editor, and keep an eye on issues in their communities that can be changed through advocacy. If you want to be kept informed of advocacy initiatives, let us know so we can send you Action Alerts. Action Alerts are an email call to action to help gain support for various issues. It’s easy to sign up – contact us to learn how to get signed up! If you are interested in becoming an MS Activist or signing up for Action Alerts, contact the Ashley Kenneth (ashley.kenneth@nmss.org) to learn more.
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EVENTS
BE INSPIRED. GET CONNECTED. WALK MS.
Registration for Walk MS is open and we are rallying team captains, walkers, volunteers and sponsors to raise awareness and funds! Join the thousands of walkers this spring who will come to walk for themselves or loved ones living with MS. WAYS TO GET INVOLVED: Be a TEAM CAPTAIN, Be a WALKER, Be a FUNDRAISER, Be a SPONSOR, Be a VOLUNTEER….Together we will find a cure.
MARCH 28
APRIL 12
APRIL 11
APRIL 18
Charlottesville, VA nTelos Pavillion Blacksburg, VA Huckleberry Trail
Virginia Beach, VA Mount Trashmore Charleston, WV Columbia Gas Bldg
Culpeper, VA Culpeper Baptist Church
Martinsville, VA Jack Dalton Park
Lexington, VA Washington & Lee University
Bristol, VA Sugar Hollow Park
Newport News, VA Newport News Park
APRIL 25
Fredericksburg, VA James Monroe High School
For information or to register, visit walkMS.org or contact our Fundraising Support Center at 855-372-1331.
APRIL 25 cont’d
Harrisonburg, VA Harrisonburg Downtown Historic Dst. Lynchburg, VA Lynchburg College
APRIL 26
Huntington, WV Ashland, KY Ritter Park
MAY 2
Richmond, VA Innsbrook
Morgantown, WV Hazel RubyMcQuain Park
Southern WV Concord University
Parkersburg, WV City Park
Clearbrook, VA Clearbrook Park
Wheeling, WV Heritage Port
MAY 9
Roanoke, VA First Presbyterian Church
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MS CONNECTION: SPRING 2015
PROGRAMS
CONNECT TO THE INFORMATION YOU NEED
The National MS Society telelearning series for people with multiple sclerosis and their families aims to provide information and guidance on current matters essential to living one’s best life with MS. Each free telelearning features topic-area expert(s) by phone with online presentations and Q&A session.
MS AND EMPLOYMENT: Managing Cognitive Symptoms and Fatigue in the Workplace: • Thursday, February 26, 2015: 8 pm Supports to Help You Find Employment • Thursday, March 12, 2015: 8 pm Guide to Flexible and Home-Based Jobs: • Thursday, March 26, 2015: 8 pm
MANAGING MS BOWEL AND BLADDER SYMPTOMS: • Tuesday, March 17, 2015: 7 pm • Thursday, March 19, 2015: 10 pm
SEX ED FOR GROWNUPS—INTIMACY IN MS:
GENDER DIFFERENCES IN MS: • Tuesday, July 21, 2015: 7 pm • Thursday, July 23, 2015: 10 pm
PREPARING FOR MS DOCTOR VISITS: • Tuesday, September 15, 2015: 7 pm • Thursday, September 17, 2015: 10 pm
• Tuesday, May 19, 2015: 7 pm • Thursday, May 21, 2015: 10 pm Visit www.nationalMSsociety.org/telelearning or call 1-800-344-4867 to register and receive the call-in information.
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WAYS TO GIVE
FOCUSING ON MS RESEARCH At the time of her diagnosis with MS in 1995, Perry Ann Jeveli was a 30-yearold graduate student looking forward to a bright career in business. Shocked by her inability to see clearly or walk unassisted during her initial exacerbation, she sought to understand the impact on her future. As she learned more about the disease, she became convinced that there must be other people with MS who were living active, healthy lives and benefiting from research advances. “At that time, I knew there must be other sides to this disease. I wanted to understand what was possible,” reflects Jeveli. With her neurologist), she worked to take advantage of one of the first therapies available for people with MS and formed a Walk MS team, “Pear’s Pack.” To date, Pear’s Pack has raised more than $500,000. As she learned more about the National MS Society-funded research taking place, Jeveli resolved to increase her volunteer efforts. In partnership with the Society, she created the Jeveli Research Fellowship in 2013 supported by the funds raised by Pear’s Pack, whereby promising young doctors receive special training at the University of California, San Francisco (UCSF) to develop the complex skills involved in the design, implementation and analysis of MS clinical trials with the goal of accelerating much-needed treatments.
PERRY ANN JEVELI (LEFT) AND HER MOTHER, BARBARA SCHAUFFLER (RIGHT), STAND ALONGSIDE DR. SABEEN LULU. “With so much promising research taking place, alongside the critical need to attract outstanding MS researchers, it was important for me to further refine the focus of our fundraising. Donors to our Walk MS team appreciate the direct correlation that their donations have with exciting research advances,” Jeveli says. At the Society’s Leadership Conference in November, Jeveli met the first Jeveli Research Fellowship recipient, Dr. Sabeen Lulu. Today, Jeveli’s commitment to MS is stronger than ever. Not only does she continue to grow her team’s fundraising to support focused research initiatives, she is also eager to lend her ear and heart to those newly diagnosed, sharing her hope for the future. Visit www.DIYMS.org to find out how to support the MS movement your own way.
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MS CONNECTION: SPRING 2015
EVENTS
WOMEN ON THE MOVE LUNCHEON
The Women on the Move Luncheon is a networking event that educates, motivates and inspires attendees to raise awareness and funding to support the fight against multiple sclerosis. The event features a celebrity speaker who has a personal connection to MS. Attended by both men and women, the event also recognizes an outstanding woman who has done something extraordinary within her community as the Woman on the Move.
CHARLOTTESVILLE THURSDAY, APRIL 30TH
SPEAKER: Although she lives with the daily challenges
of MS, diabetes, and Sjogren’s Syndrome, Zoe Koplowitz Location: Boar’s Head Pavilion has successfully completed a total of twenty-seven marathons, all in last place. She has been featured on Doors open at 11:00 am Lunch & guest speaker begin numerous TV and radio programs including Saturday Night Live and “The Today Show.” She also holds at 12:00 pm the distinction of being the only non-celebrity to be featured in a Milk Mustache Ad.
If you would like more information or would like to sponsor a table for the Charlottesville event, please contact Delton Hanson at 434-465-6035 or delton.hanson@nmss.org.
RICHMOND TUESDAY, JUNE 23RD
SPEAKER: Bobbi Doorenbos was diagnosed with MS
in 2004, but she doesn’t let that stop her! She serves as a Colonel in the Air National Guard and is amongst Location: Omni the first female F-16 pilots in the U.S. She served in Richmond Hotel Operations IRAQI FREEDOM AND SOUTHERN Doors open at 11:00 am WATCH, scrambled on September 11, 2001 to Lunch & guest speaker begin provide Presidential protection, and performed combat air patrol over the nation’s capital. She was nationally recognized by the at 12:00 pm Federally Employed Women’s organization with their 2006 Meritorious Service Award. She has worked as a White House fellow under President George W. Bush and most recently, special advisor to Vice President Joe Biden for Defense Policy and Intelligence Programs. She has served her Location: Founder’s Inn & Spa community extensively as a volunteer and board member for the Assault Care Center Extending Shelter and Support, as a member of the Red Doors open at 11:00 am Lunch & guest speaker begin Cross’ Disaster Response and Emergency Services teams, and as a mentor and tutor. at 12:00 pm
VIRGINIA BEACH THURSDAY, JUNE 25TH
If you would like more information or would like to sponsor a table for the Richmond and/or Virginia Beach event(s), please contact Bobby Holt at 757-216-1221 or bobby.holt@nmss.org.
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EVENTS
DINNER OF CHAMPIONS—SAVE THE DATE
Honoring Peter S. Yates President of Shenandoah Newspaper Corporation, Editor and General Manager of Daily News-Record May 27, 2015 JMU Festival Center, Harrisonburg, VA Dinner Chair Karen W Wigginton, Ed.D. Vice President – Corporate Marketing & Communications Sunnyside Communities If you would like to sponsor a table, buy a ticket, or more information, please contact Delton Hanson at 434-465-6035 or delton.hanson@nmss.org.
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LIVING WITH MS
TIPS FOR A SUCCESSFUL INTERVIEW BY CHRISTINA L. FORSTER, MA, CRC
So, you’re in the market for a new position and have sent your resume to dozens of companies, when you finally get the call for an interview! Whether it is a phone or face to face interview, you need to maximize your efforts at making this a stepping stone towards your next position. Finding work can be stressful for job seekers with disabilities, who may encounter prejudice during their search. Preparation is the key to utilizing an interview as a way to demonstrate your abilities not your disability.
HERE ARE A FEW TIPS FOR PREPARING: Do your research! Nothing will set you apart from the competition more than showing that you have taken the time to learn about the organization you are interviewing with. A good starting point is to research the company’s website and prepare questions for the employers during your interview. Show that you are interested in the position and the company. Dress for success. First impressions matter. Dress professionally when interviewing in person and do not overdo it with cologne or perfume. Be on time! Nothing is worse than leaving a bad first impression when showing up late for your interview. Leave yourself extra time for the commute and do not arrive more than 15
minutes early. Bring a book or newspaper to read in your car or the lobby if you do arrive extra early. Bring your resume. Have your resume on hand to provide to interviewers. Sometimes they will ask for it as a test while other times they really need it. Also, have a list of references and their contact info prepared on a separate sheet of paper. Practice. Compile a list of your strengths and weakness so you are organized and thoughtful when asked questions. Also, look up popular behavioral questions ahead of time and prepare examples from previous work experiences to answer any thought provoking questions the interviewer may pose to you. You may also want to have a friend or family member help you practice with a mock interview. Prepare questions! As important as it is to have well prepared answers for the interviewer’s questions, it is equally important to compile a list of questions to ask the interviewer. The questions you ask show how interested you are in the position, company and field. Listen. When asked a question by the interviewer, really listen to what they are saying. If you’re not sure, it’s OK to ask them to repeat the question.
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To Disclose or Not. Many individuals ask if they should disclose their disability during a job interview. The decision is ultimately yours. As a matter of law, you have no obligation to disclose anything about your disability status or underlying diagnosis during a job interview. However, there may be certain circumstances when you may need to mention your diagnosis during the interview process, such as if you need an accommodation. If you decide to disclose, plan for it accordingly by thinking about the consequences of sharing this intimate information with a prospective employer. Remember, if you choose to disclose during an interview, it is important to talk about your abilities, not your disability. This is your time to shine- sell employers on what you can do! Know your rights. Knowing your rights protects you from answering questions that are illegal or discriminatory. The American’s with Disabilities Act of 1990 bars employers from asking questions that might reveal a disability or mental health issue. You do not have to reveal a disability until you need an accommodation for it. Most individuals with MS can relate to the foreboding that accompanies them to a job interview when thoughts of the types of questions they will be asked concerning their disability come to mind. Here is a brief rundown of the Legal and Illegal Questions an employer can and cannot ask.
Questions an interviewer cannot ask: • Do you have a disability? • Do you have any pre-existing health conditions? • How many sick days did you take with your previous employer? • What medications are you taking, or have taken? • Are you able to use your legs at all? • Are you on any medication? Questions an interviewer can ask: • Can you perform the essential functions the particular position you are applying for? • How will you perform the job function (if they know you have a disability)? • What reasonable accommodation will you need ( if you have an obvious disability or disclose)?
ADVERTISING OPPORTUNITIES
Overall, these tips, along with a well-crafted resume and an appropriate experience level, Help the Chapter share important information should assist you in getting to the next step about research, programs, services and events of the interview process. Remember to follow by advertising in our Newsletter. You may up with a thank you after the interview, either sponsor the entire issue, or take out a full, 1/2 by email, letter or a phone call. Happy job or 1/4 page ad....the opportunities are endless! hunting! Contact Robyn M. Hirsch at 757-319-4252 or robyn.hirsch@nmss.org to learn more.
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LIVING WITH MS
GOING SOMEPLACE NEW BY KENDRA L. WILLIAMS
I’m about a half-mile down the wooded Lost Lake Trail when I start to question what I’m doing here at Ledges State Park. Prudence, my shiny purple walker, rumbles over the gravel and through the woods on this supposedly “accessible” trail while my tired 8-year-old son Colin whines for a snack. Our fishing pole flops in my walker basket, and my rambunctious black lab Daisy tugs on her leash. Remind me again why I thought this was a good idea? Because it’s Saturday. It’s not terribly hot or rainy (yet). And life is about more than spending weekends volleying from one big box store to the next—or about resting to recuperate from
the fatigue that multiple sclerosis causes. So I cheerfully talked Colin and Daisy into the car and trekked 50 minutes north to the Ledges, as people here in Des Moines, Iowa, call them, because I hadn’t been there before. To me, that qualifies as travel. And I have what you might call a travel addiction.
FINDING A BETTER WAY
When the Mayo Clinic announced that I had primary-progressive multiple sclerosis earlier this year, my disease was in free fall and my job as a senior travel editor for a monthly magazine ended. I was losing my ability to walk and to write, and my memory was slowly turning to mush. But traveling? Traveling would still be a part of my life, even if I had to do it differently. So that’s how I ended up at the Ledges, where soaring sandstone bluffs stand in stark comparison to Iowa’s rolling hills of corn. Ablebodied visitors climb wooden steps to lookout points and wade in shallow streams that snake through the park. For those of us who need four wheels, it’s a little trickier. The accessible trail winds through pretty woodlands—but leads to a lake surrounded by tall reeds and no beach. A bit of a letdown, when I think of the physical energy I spent to get there.
KENDRA EXPLORES AN “ACCESSIBLE” TRAIL
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Surely there is a better way to enjoy this park. I guide the car down the road that leads through the canyon. The speedometer reads about 20 mph as I gaze up at the cliffs and glance at the streams that run across the road after a good rain. A handful of kids line the pavement, hoping cars will speed up and splash them. I oblige and wave as a sheet of water douses them. I pull my car over and get out. Families wade through the streams, stopping to pick up rocks, look at frogs, or watch schools of minnows swirl through the water in perfect unison. Without my husband’s steady hand, I don’t attempt wading far down the stream. But Colin takes Daisy, both of them happy to get wet and muddy while I snap pictures. And that was it, really. A few hours. A few photos. A few memories. It cost me nothing but gas, and Colin and I got to see someplace new. Breathe in the fresh air. Connect with kids who otherwise would be home begging to play video games.
SOMEPLACE NEW AT LEDGES STATE PARK
Let go of the week’s stressors and center our minds. Travel does all of that, and more, and it doesn’t have to be an expensive trip or an itinerary that would make the D-Day invasion look slapdash. It happens every time you leave your home and go to another place. Kendra L. Williams is a longtime writer and editor and the founder of www.MStravels.org, a blog about the ups and downs of accessible travel. She lives in West Des Moines, Iowa. Originally published at www.MSconnection. org/blog.
KENDRA’S SON, COLIN, AND LABRADOR RETRIEVER DAISY ENJOY THE TRIP Visit www.nationalMSsociety.org/ travel for tips and ideas for planning your next trip.
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RESEARCH
DESIGNING SOLUTIONS Dr. Christopher Luzzio doesn’t just use assistive technology to help people with multiple sclerosis – he designs and builds it, too.
CREATING A BRIDGE
Dr. Luzzio works as an MS clinician at University of Wisconsin (UW) Hospital and Clinics in Madison, but he also teaches at the University of Wisconsin College of Engineering. This is because of his background in bioengineering—specifically, mechanical engineering. “I’ve always been a tinkerer,” he says, “taking apart machines and fixing them or figuring out how they work and building new ones.” Dr. Luzzio adds, “Bioengineering is applying engineering practice to solve problems in medicine or biology.” An example of this type of work would be the development of an artificial limb. At the UW College of Engineering, he mentors and teaches students how to design and fabricate assistive devices. He also meets weekly with senior design students in a class led by associate professor, Dr. Heidi-Lynn Ploeg. “Necessity is the mother of invention,” Dr. Luzzio said. “When I see a need for a device to help one of my patients with MS, I present the challenge to our engineering design students.” The students then design a device,
DR. CHRISTOPHER LUZZIO IN THE WORKROOM build a prototype and test it. The students get real-world experience, working directly with people living with MS to develop potential solutions for the challenges they are facing. “I find it rewarding to help educate young engineers,” Dr. Luzzio says. “My presence has helped bridge their engineering education, medicine and community service.”
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USEFUL SOLUTIONS
Drs. Luzzio and Ploeg are members of UW-CREATe (Center for Rehabilitation Engineering and Assistive Technology), an organization that finds independence and mobility solutions for people with disabilities. Dr. Luzzio’s latest project helped a woman with MS use an e-reader more efficiently by mounting it on a stand that includes a sensor connected to her finger. When she moves her finger, metal arms contact the screen and advance the page, which had been difficult for her to do without assistance. Other projects that Dr. Luzzio and his students have worked on include creating supports for weakened arms, various exercise machines and a wheelchair designed to help a person with severe leg weakness get back into the chair more easily after a fall. This semester, students will work on a retractable mini-drawbridge to go over a sliding door entryway, which will allow easier wheelchair access. One of Dr. Luzzio’s favorite projects was designing and building a prosthetic arm control system to help with fine motor skills.
DR. LUZZIO USES A SENSOR ATTACHED TO HIS FINGER TO TURN THE PAGES OF AN E-READER.
“What’s exciting is seeing a need, creating a solution for that need, and then making it into reality,” Dr. Luzzio says. “Unlike basic science investigations for MS that may require years to reach results, these activities lead quickly to an obtainable useful product that will help a person.” Originally published in Wisconsin’s MS Connection.
DRS. LUZZIO (RIGHT) AND PLOEG (LEFT) AND THEIR STUDENTS WITH A RETRACTABLE DRAWBRIDGE FOR ACCESSIBILITY OBSTACLES.
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CHAPTER NEWS
AWARENESS
PARTNERS IN MS CARE
WORLD MS DAY IS MAY 27TH
• Center for Comprehensive MS Care: Additionally shown the ability to offer a multi-disciplinary model of care to address the often complex needs of many people with MS. They offer access to a full array of medical, psycho-social and rehabilitation services delivered in a coordinated fashion where providers share common goals for patient outcomes.
Living with MS involves all kinds of challenges. For World MS Day 2015, we will celebrate the ways that people all over the world are breaking down the barriers to living with MS.
The National MS Society’s Partners in MS Care program recognizes and supports quality MS care. The program involves healthcare professionals in the areas of:
• Neurologic Care: Neurologists with current knowledge and experience treating MS. • Rehabilitation: Physical therapists, occupational therapists and speech/language pathologists with demonstrated knowledge in evaluating and treating people with MS. • Mental Health: Psychologists, social workers, counselors, and marriage and family counselors. To find out more information about Partners near you, visit: www.nationalmssociety.org/ Treating-MS/Find-an-MS-Care-Provider/ Partners-in-MS-Care or contact an MS Navigator by calling 1-800-344-4867.
World MS Day brings the global MS community together to share stories, raise awareness and campaign with and for everyone affected by multiple sclerosis.
We ask you to tell us about the person/people and organizations that have broken down the barriers to living with MS and made a difference in their lives. Use #strongerthanMS to share messages. Visit www.worldmsday.org for more information, as well as to download resources for World MS Day.
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COMMUNITY CALENDAR
PROGRAMS IN THIS SECTION ARE NOT ORGANIZED BY THE NATIONAL MULTIPLE SCLEROSIS SOCIETY. MULTIPLE SCLEROSIS EDUCATIONAL GROUP The Multiple Sclerosis Educational Group is your opportunity to exchange information and coping strategies and get the latest on MS research and treatment in a comfortable and confidential environment. This program is designed for MS patients, caregivers, and families. 4th Tuesday of the Month at 5:30 pm Neurosciences Conference Room Riverside Medical Office Building 12200 Warwick Blvd., Newport News, VA 23601 The group is offered by Riverside Center for Neurosciences and meets on an ongoing basis. For information call 757-875-7880.
CAN DO MULTIPLE SCLEROSIS WEBINARS Join Can Do MS live from the convenience of your home, at no charge, for an in-depth discussion on topics relating to exercise, nutrition, communication, symptom management and total health. March 10, 2015 : 8:00 – 9:15 p.m.: Staying Vertical: Reduce Risks for Falls Living with MS can increase your chances of falling and becoming injured. This webinar will help you eliminated fall hazards in your home and make it easier to get around safely. Join Physical Therapist, Kathy SanMartino, and Occupational Therapist, Ann Mullinix, as they discuss risk factors that can contribute to falling and provide ways to improve your safety at home and in the community. April 14, 2015 : 8:00 – 9:15 p.m.: Update Your Outlook on Progressive MS Please join Pat Kennedy, Nurse Practitioner, and Roz Kalb, Psychologist, as they share their thoughts and perspectives about living with progressive forms of MS. In this webinar, you will hear about exciting new developments in research, learn how to manage your symptoms, and get helpful tips on how you and your support partner can manage day-to-day challenges while maintaining a healthy partnership and emotional equilibrium. To register visit www.mscando.org/multiple-sclerosis-programs/webinar-series/register or call 800-367-3101 x1281.
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VOLUNTEER SPOTLIGHT
THE NELSON FAMILY
One of our favorite early memories with our dad was running in our neighborhood’s one-mile Fourth of July race. Our picture made the newspaper – Dana Nelson running with his daughters, Stephanie, 5, and Heather, 7. Our dad was not only active as we were growing up, he was involved. He didn’t just teach us to swim, he refereed our swim meets. He built sets for the high school musical and chaperoned field trips. When our dad was diagnosed 18 years ago, we weren’t familiar with MS and didn’t know what to expect. In the beginning, we noticed only small changes. He walked with a cane. Sometimes he didn’t realize it when his shoe fell off. But he approached it with humor and stayed as active and positive as before. Eventually, the changes became more noticeable. He tired easily and, as balance and walking became more difficult, he transitioned from the cane to a walker. As time went on, and as his mobility lessened, he transitioned to an electric scooter and then finally a power chair. Our dad’s case of MS is progressive. He’s never gone into remission. Over the last 18 years, he’s steadily lost more and more mobility as he’s tried every drug, steroid, treatment and doctor. Sometimes there would be results for a day or two. But then the progression would begin again. It’s hard not to take for granted the independence and abilities those of us who are healthy have on a daily basis. We cook dinner, walk the dog and check our email without thinking twice. When our dad would give almost anything just to hug his grandchildren or hold a cup of coffee, it seemed almost ungrateful to not use our abilities to the fullest. So at Walk MS last Spring, we decided to challenge ourselves by signing up for Bike MS: Ride Virginia. We weren’t cyclists. We couldn’t imagine riding 25 miles, much less 150. But for us, it was about doing something in our father’s honor. We didn’t want it to be easy. We wanted to have to make a bit of a sacrifice, to put in blood, sweat and tears. Other riders were more experienced, but we made up for it with motivation. The smallest motions, like changing gears, reminded us that our father can’t change the television channel or the thermostat. When our legs burned and our shoulders ached, we thought about grateful we are that our brains can still talk to our bodies to feel that pain.
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THE SMALLEST MOTIONS, LIKE CHANGING GEARS, REMINDED US THAT OUR FATHER CAN’T CHANGE THE TELEVISION CHANNEL OR THE THERMOSTAT. Two days on our bikes also gave us a lot of time to think about our parents and the long battle they’ve waged together against MS for nearly two decades. They may not have been out there pedaling, but they were with us in spirit as we thought about how MS has changed their lives and ours. We couldn’t have been prouder to see them cheering for us at the finish line. We will continue to do Walk MS and Bike MS and stay involved with the chapter to help make these events a success. Although it may be too late for a cure to help our dad, we hope there’s a cure in time for other dads with MS to walk their daughters down the aisle and play with their grandchildren. But mostly, we do it as a tribute to the man who taught us to walk, run, ride a bike and never again take those abilities for granted.
GET INVOLVED
VOLUNTEER OPPORTUNITIES
Volunteers are critical to our success! Several opportunities are available to support our upcoming fundraising events and we would love to have you volunteer.
WALK MS POSITIONS: • Registration • Greeter • Route Support (SAG) Driver • Rest Stop • Professional (ie: dj services, musician) • Photography
• Medic Support – CPR Certified • Finish Line Celebration • Set-up • Break Down
BIKE MS POSITIONS: • • • • •
Set-up Breakdown Rest Stop Food Servers Truck/Driver / Route Support • SAG Driver • Volunteer Information Support
• Luggage Handler • Finish Line Cheerleaders • Parking Attendant • Professional (ie: massage therapist, musician)
To learn more or to sign up to volunteer, please contact the Deborah Richards at 804-591-3034.
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MS CONNECTION: SPRING 2015
SELF HELP GROUP LISTING FOR MORE INFORMATION CONTACT 1-800-344-4867 UNLESS OTHERWISE NOTED. CENTRAL VIRGINIA
Hanover Group Third Thursday: 1:30-3 pm Church of the Redeemer 8275 Meadowbridge Rd., Mechanicsville, VA Leader: Dana 804-746-7481 Petersburg Day Group Second Thursday: 10-11:30 am River View-201 Epps St., Hopewell Leader: Melanie 804-526-9129 Petersburg Evening Group Third Thursday: 6-8 pm Southside Regional Hospital, Third Flr Classroom Leader: Quennette 434-246-6007, 804-731-9069 Smyelin MS Support Group (Chesterfield) Third Wednesday: 12-1 pm Johnston-Willis Hospital, Stalker Auditorium in the Main Hospital Leader: Sheila 804-739-8488 Sharon 804-794-7589 South Hill Empowerment Group Third Wednesday: 5:30-7:30 pm Community Memorial Health Center 125 Buena Vista Circle Leader: Starr 434-378-2031 Richmond Day Group Second Monday: 10:15-11:30 am Tuckahoe YMCA, 9211 Patterson Ave. Leader: Darlene 804-346-2040 Richmond Weekend Group Second Saturday: 11:30 am-1 pm HealthSouth Classroom, 5700 Fitzhugh Ave. Leader: Lorenzo 804-921-9712 Richmond (VA Home) For those with advanced MS Every Monday: 11 am 1101 Hampton St. Leader: Judi 804-359-4093
Tappahannock Neurological Support Second Monday: 10:30 am Beale Baptist Church Leader: Sharon 804-580-7315 Joan 804-443-9226 The Invincibles Third Tuesday: 7-8:30 pm HealthSouth Fredericksburg, 300 Park Hill Drive Leader: Belinda 540-373-4377
EASTERN VIRGINIA Chesapeake Group
Third Tuesday: 7 pm Lifestyle Fitness Center at Chesapeake Regional Medical Center 800 N. Battlefield Blvd., Chesapeake, VA Leader: Margie 757-482-3247 Suffolk Group Third Wednesday: 6:30-8 pm Magnolia United Methodist Church 1764 Wilroy Road, Suffolk, VA Leader: Willie Ann 757-539-0139 Southside Group (Call for full list of Dates & Locations) Fourth Wednesday: 3-4:30 pm Meyera E. Oberndorf Central Library 4100 Virginia Beach Blvd., Va. Bch. Leader: Peter (757) 671-1971 Gloucester Group First Wednesday: 10:30 am-12:30 pm Riverside Wellness and Fitness Center 7516 Hospital Drive, Gloucester, VA Leader: Barbara 804-695-9950 African American Inspirational Group First Thursday: 11 am Hampton Public Library 936 Big Bethel Road, Hampton, VA Leader: D’Andre 757-660-3455 VeeGee 757-696-2540
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Peninsula Evening Group Second Thursday: 5:30 pm Sentara Careplex Hospital (York River Entrance, Conf. Rm. C) 3000 Coliseum Drive, Hampton, VA Leader: Kendrick 757-408-9751 Diana 757-358-0284
WESTERN VIRGINIA
Roanoke Self Help Group Last Thursday: 6:30- 8 pm Roanoke Valley Association of Realtors (RVAR) 4358 Starkey Road, Roanoke VA Leader : Suzanne 540-404-1167 or msofroanokevalley@gmail.com Let’s Talk MS Support Group Third Wednesday: 12-1 pm Bedford Baptist Church, 1516 Oakwood St, Bedford City, VA Leader: Annette 540-587-5356 or feb30@juno.com Lexington/Rockbridge Self Help Group Second Thursday: 5:30 pm-7 pm RE Lee Memorial Church (Library) 123 W Washington St, Lexington City, VA Leader: Susan 540-460-7091or crossx5@ embarqmail.com MS Options Support Group Second Tuesday: 12-1 pm Meadows Presbyterian Church 2200 Angus Road, Charlottesville, VA Leader: Lisa 434-296-5964 or LE2P@ VIRGINIA.EDU MS Lunch Bunch Fourth Thursday: 11:30 am-1 pm Martha Jefferson House 1600 Gordon Ave, Charlottesville, VA Leader: Kitty 434-293-3573 or kittypick@aol.com New River Valley Support Group First Tuesday: 6:30-8 pm Montgomery County Dept. of Social Services 210 Pepper St S Ste B, Christiansburg, VA Leader: Jeff 540-230-3430 or garageshop2002@yahoo.com
Smith Mountain Lake Self Help Group First Wednesday: 12-1 p.m. 15353 Moneta Rd, Moneta, VA Leader: Ken 540-576-3330 or kandjshaf@aol.com Augusta County MS Support Group Third Thursday: 6-8 pm August County Library, 1759 Jefferson Hwy Leader: Sandra 540-294-3063 or busybees72003@yahoo.com Co-Leader: Cheryl 804-678- 8280 or cformosa@lycos.com **NEW GROUP** Care Partner Support Group First meeting: Thursday, February 26th 6:30-8pm Last Thursday: 6:30-8pm thereafter Chapter Charolttesville Office, Conference Room 1020 Carrington Place, Ste. 100 Charlottesville, VA Leader: Ray 434-962-5643 or jrheron@cstone.net
WEST VIRGINIA
Made Strong Support Group Third Thursday: 6-7:30 pm 200 Fernandez Drive, Beckley, WV 25801 Leader: Melinda 304-890-6284 or jstone1972@suddenlink.com
ADDITIONAL SUPPORT OPPORTUNITIES ON THE PHONE MSFriends: Peer Telephone Support 866-673-7436, 9 am–Midnight ET
CHAT ROOM & BOARDS MSWorld- www.MSworld.org
ONLINE PEER CONNECTIONS MSConnection- www.MSconnection.org Connect with others on a discussion forum, join an online support group, or make a one on one peer connection via email (telephone support also available if needed).
National Multiple Sclerosis Society Virginia West Virginia Chapter 4200 Innslake Drive Suite 301 Glen Allen, VA 23060
CONNECT WITH US AT WALK MS AND BIKE MS:
Walk MS See page 07 for a full list of Walk MS dates.
Register today at walkMS.org.
Bike MS See page 04 for a full list of Bike MS dates.
Register today at bikeMS.org.
WE MOBILIZE PEOPLE AND RESOURCES TO DRIVE RESEARCH FOR A CURE AND TO ADDRESS THE CHALLENGES OF EVERYONE AFFECTED BY MS.