MS CONNECTION VIRGINIA - WEST VIRGINIA C … · spring 2015 ms connection virginia - west virginia c hapter newsletter inside this issue 03 ms awareness week— march 2-8, 2015 07

SPRING 2015VIRGINIA - WEST VIRGINIA CHAPTER

MS CONNECTION NEWSLETTER

INSIDETHISISSUE

03MS AWARENESS WEEK— MARCH 2-8, 2015

07BE INSPIRED. GET CONNECTED. WALK MS.

14GOING SOMEPLACE NEW

18PARTNERS IN MULTIPLE SCLEROSIS CARE

BIKE MSPAGE 04

EXCITING NEWSPAGE 02

NationalMultiple SclerosisSocietyVirginia - West Virginia Chapter

02 MS CONNECTION: SPRING 2015

CHAPTER NEWS

LETTER FROM THE PRESIDENTDear 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 EllisChapter President

03NATIONALMSSOCIETY.ORG | 1-800-344-4867

NATIONAL MULTIPLE SCLEROSIS SOCIETYVIRGINIA - WEST VIRGINIA CHAPTERMain Office:4200 Innslake DriveSuite 301Glen Allen, VA 23060

1-800-344-4867 • www.MSVirginia.org

Chairman: Gregory BishopChapter President: Sherri EllisDesign: 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.

CHAPTER NEWS

MS AWARENESS WEEK—MARCH 2-8, 2015We 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!

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 [email protected].

Search for National MS Society Virginia - West Virginia Chapter

04 MS CONNECTION: SPRING 201504 MS CONNECTION: SUMMER 201404 MS CONNECTION: SPRING 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 ANNIVERSARYDate(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 GROUPDate(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 VINEDate(s): June 13-14, 2015 • Start/Finish Location: Pollak Vineyard - Greenwood, VALocation: 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 dayRegistration: $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.

05NATIONALMSSOCIETY.ORG | 1-800-344-4867 0505

PROGRAMS

SAVE THE DATE FOR 2015 MS KIDS CAMPJULY 24-26, 2015We 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 fi fth 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.

For a brochure or more information, please contact Kathryn Zapach at 804-591-3039 or [email protected].

AWARENESS ACTIVITIES

NORFOLK ADMIRALS MS AWARENESS NIGHT

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.

For more information, contact Robyn Hirsch at 757-319-4252 or [email protected].

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.


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 ([email protected]) to learn more.

ADVOCACY

MS ACTION DAY AT THE GENERAL ASSEMBLY


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.

For information or to register, visit walkMS.org or contact our Fundraising Support Center at 855-372-1331.

MARCH 28Charlottesville, VAnTelos Pavillion

APRIL 11Blacksburg, VAHuckleberry TrailCulpeper, VACulpeper Baptist ChurchLexington, VAWashington & Lee UniversityNewport News, VANewport News Park

APRIL 12Virginia Beach, VAMount Trashmore

APRIL 18Charleston, WVColumbia Gas BldgMartinsville, VAJack Dalton Park

APRIL 25Bristol, VASugar Hollow ParkFredericksburg, VAJames Monroe High School

APRIL 25 cont’dHarrisonburg, VAHarrisonburg Downtown Historic Dst.Lynchburg, VALynchburg CollegeMorgantown, WVHazel Ruby-McQuain ParkParkersburg, WVCity ParkWheeling, WVHeritage Port

APRIL 26Huntington, WV -Ashland, KYRitter Park

MAY 2Richmond, VAInnsbrookSouthern WVConcord University

MAY 9Clearbrook, VAClearbrook ParkRoanoke, VAFirst Presbyterian Church


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: • Tuesday, May 19, 2015: 7 pm • Thursday, May 21, 2015: 10 pm

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

Visit www.nationalMSsociety.org/telelearning or call 1-800-344-4867 to register and receive the call-in information.



At the time of her diagnosis with MS in 1995, Perry Ann Jeveli was a 30-year-old 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.

“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.

PERRY ANN JEVELI (LEFT) AND HER MOTHER, BARBARA SCHAUFFLER (RIGHT), STAND ALONGSIDE DR. SABEEN LULU.

WAYS TO GIVE

FOCUSING ON MS RESEARCH

Visit www.DIYMS.org to find out how to support the MS movement your own way.


SPEAKER: Bobbi Doorenbos was diagnosed with MS Bobbi Doorenbos was diagnosed with MS in 2004, but she doesn’t let that stop her! She serves as in 2004, but she doesn’t let that stop her! She serves as a Colonel in the Air National Guard and is amongst a Colonel in the Air National Guard and is amongst the first female F-16 pilots in the U.S. She served in the first female F-16 pilots in the U.S. She served in Operations IRAQI FREEDOM AND SOUTHERN Operations IRAQI FREEDOM AND SOUTHERN WATCH, scrambled on September 11, 2001 to WATCH, scrambled on September 11, 2001 to provide Presidential protection, and performed combat provide Presidential protection, and performed combat air patrol over the nation’s capital. She was nationally recognized by the air patrol over the nation’s capital. She was nationally recognized by the Federally Employed Women’s organization with their 2006 Meritorious Federally Employed Women’s organization with their 2006 Meritorious Service Award. She has worked as a White House fellow under President Service Award. She has worked as a White House fellow under President George W. Bush and most recently, special advisor to Vice President Joe George W. Bush and most recently, special advisor to Vice President Joe Biden for Defense Policy and Intelligence Programs. She has served her Biden for Defense Policy and Intelligence Programs. She has served her community extensively as a volunteer and board member for the Assault community extensively as a volunteer and board member for the Assault Care Center Extending Shelter and Support, as a member of the Red Care Center Extending Shelter and Support, as a member of the Red Cross’ Disaster Response and Emergency Services teams, and as a mentor Cross’ Disaster Response and Emergency Services teams, and as a mentor and tutor. and tutor.

EVENTS

WOMEN ON THE MOVE LUNCHEONThe 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.

VIRGINIA BEACH THURSDAY, JUNE 25THLocation: Founder’s Inn & SpaDoors open at 11:00 amLunch & guest speaker begin at 12:00 pm

RICHMONDTUESDAY, JUNE 23RDLocation: Omni Richmond HotelDoors open at 11:00 amLunch & guest speaker begin at 12:00 pm

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 [email protected].

CHARLOTTESVILLETHURSDAY, APRIL 30THLocation: Boar’s Head PavilionDoors open at 11:00 amLunch & guest speaker begin at 12:00 pm

SPEAKER: Although she lives with the daily challenges Although she lives with the daily challenges of MS, diabetes, and Sjogren’s Syndrome, Zoe Koplowitz of MS, diabetes, and Sjogren’s Syndrome, Zoe Koplowitz has successfully completed a total of twenty-seven has successfully completed a total of twenty-seven marathons, all in last place. She has been featured on marathons, all in last place. She has been featured on numerous TV and radio programs including Saturday numerous TV and radio programs including Saturday Night Live and “The Today Show.” She also holds Night Live and “The Today Show.” She also holds the distinction of being the only non-celebrity to be the distinction of being the only non-celebrity to be featured in a Milk Mustache Ad. 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 [email protected].


EVENTS

DINNER OF CHAMPIONS—SAVE THE DATE

HonoringPeter S. Yates

President of Shenandoah Newspaper Corporation,Editor and General Manager of Daily News-Record

May 27, 2015JMU Festival Center, Harrisonburg, VA

Dinner ChairKaren W Wigginton, Ed.D.

Vice President – Corporate Marketing & CommunicationsSunnyside Communities

If you would like to sponsor a table, buy a ticket, or more information,please contact Delton Hanson at

434-465-6035 or [email protected].


LIVING WITH MS

TIPS FOR A SUCCESSFUL INTERVIEWBY 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.



ADVERTISING OPPORTUNITIESHelp the Chapter share important information about research, programs, services and events by advertising in our Newsletter. You may sponsor the entire issue, or take out a full, 1/2 or 1/4 page ad....the opportunities are endless!Contact Robyn M. Hirsch at 757-319-4252 or [email protected] to learn more.

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)?

Overall, these tips, along with a well-crafted resume and an appropriate experience level, should assist you in getting to the next step of the interview process. Remember to follow up with a thank you after the interview, either by email, letter or a phone call. Happy job hunting!



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 WAYWhen 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. Able-bodied 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.

LIVING WITH MS

GOING SOMEPLACE NEWBY KENDRA L. WILLIAMS

KENDRA EXPLORES AN “ACCESSIBLE” TRAIL


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.

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.

Visit www.nationalMSsociety.org/travel for tips and ideas for planning your next trip.

KENDRA’S SON, COLIN, AND LABRADOR RETRIEVER DAISY ENJOY THE TRIP

SOMEPLACE NEW AT LEDGES STATE PARK


Dr. Christopher Luzzio doesn’t just use assistive technology to help people with multiple sclerosis – he designs and builds it, too.

CREATING A BRIDGEDr. 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,

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.”

RESEARCH

DESIGNING SOLUTIONS

DR. CHRISTOPHER LUZZIO IN THE WORKROOM


USEFUL SOLUTIONSDrs. 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.

“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.

DR. LUZZIO USES A SENSOR ATTACHED TO HIS FINGER TO TURN THE PAGES OF AN E-READER.

DRS. LUZZIO (RIGHT) AND PLOEG (LEFT) AND THEIR STUDENTS WITH A RETRACTABLE DRAWBRIDGE FOR ACCESSIBILITY OBSTACLES.


AWARENESS

WORLD MS DAY IS MAY 27THWorld MS Day brings the global MS community together to share stories, raise awareness and campaign with and for everyone affected by multiple sclerosis.

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.

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.

CHAPTER NEWS

PARTNERS IN MS CAREThe National MS Society’s Partners in MS Care program recognizes and supports quality MS care. The program involves healthcare professionals in the areas of:• 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.

• 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 fi nd 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.

18


COMMUNITY CALENDAR PROGRAMS IN THIS SECTION ARE NOT ORGANIZED BY THE NATIONAL MULTIPLE SCLEROSIS SOCIETY.

MULTIPLE SCLEROSIS EDUCATIONAL GROUPThe 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 pmNeurosciences Conference RoomRiverside Medical Office Building12200 Warwick Blvd., Newport News, VA 23601

Th e group is off ered by Riverside Center for Neurosciences and meets on an ongoing basis. For information call 757-875-7880.

CAN DO MULTIPLE SCLEROSIS WEBINARSJoin 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 FallsLiving with MS can increase your chances of falling and becoming injured. Th is webinar will help you eliminated fall hazards in your home and make it easier to get around safely. Join Physical Th erapist, Kathy SanMartino, and Occupational Th erapist, 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 MSPlease 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.


VOLUNTEER SPOTLIGHT

THE NELSON FAMILYOne 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.



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.

NATIONALMSSOCIETY.ORG | 1-800-344-4867

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.


SELF HELP GROUP LISTINGFOR MORE INFORMATION CONTACT 1-800-344-4867 UNLESS OTHERWISE NOTED.

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CENTRAL VIRGINIAHanover GroupThird Thursday: 1:30-3 pmChurch of the Redeemer8275 Meadowbridge Rd., Mechanicsville, VALeader: Dana 804-746-7481Petersburg Day GroupSecond Thursday: 10-11:30 amRiver View-201 Epps St., HopewellLeader: Melanie 804-526-9129Petersburg Evening GroupThird Thursday: 6-8 pmSouthside Regional Hospital, Third Flr ClassroomLeader: Quennette 434-246-6007, 804-731-9069Smyelin MS Support Group (Chesterfield)Third Wednesday: 12-1 pmJohnston-Willis Hospital, Stalker Auditorium in the Main HospitalLeader: Sheila 804-739-8488Sharon 804-794-7589South Hill Empowerment GroupThird Wednesday: 5:30-7:30 pmCommunity Memorial Health Center125 Buena Vista CircleLeader: Starr 434-378-2031Richmond Day GroupSecond Monday: 10:15-11:30 amTuckahoe YMCA, 9211 Patterson Ave.Leader: Darlene 804-346-2040Richmond Weekend GroupSecond Saturday: 11:30 am-1 pmHealthSouth Classroom, 5700 Fitzhugh Ave.Leader: Lorenzo 804-921-9712Richmond (VA Home)For those with advanced MSEvery Monday: 11 am1101 Hampton St.Leader: Judi 804-359-4093Tappahannock Neurological SupportSecond Monday: 10:30 amBeale Baptist ChurchLeader: Sharon 804-580-7315 Joan 804-443-9226

The InvinciblesThird Tuesday: 7-8:30 pmHealthSouth Fredericksburg, 300 Park Hill DriveLeader: Belinda 540-373-4377

EASTERN VIRGINIAChesapeake Group Third Tuesday: 7 pmLifestyle Fitness Center at Chesapeake Regional Medical Center800 N. Battlefield Blvd., Chesapeake, VALeader: Margie 757-482-3247Suffolk GroupThird Wednesday: 6:30-8 pmMagnolia United Methodist Church1764 Wilroy Road, Suffolk, VALeader: Willie Ann 757-539-0139 Southside Group (Call for full list of Dates & Locations)Fourth Wednesday: 3-4:30 pmMeyera E. Oberndorf Central Library4100 Virginia Beach Blvd., Va. Bch.Leader: Peter (757) 671-1971Gloucester GroupFirst Wednesday: 10:30 am-12:30 pmRiverside Wellness and Fitness Center7516 Hospital Drive, Gloucester, VALeader: Barbara 804-695-9950African American Inspirational GroupFirst Thursday: 11 amHampton Public Library936 Big Bethel Road, Hampton, VALeader: D’Andre 757-660-3455 VeeGee 757-696-2540 Peninsula Evening Group Second Thursday: 5:30 pmSentara Careplex Hospital (York River Entrance, Conf. Rm. C)3000 Coliseum Drive, Hampton, VALeader: Kendrick 757-408-9751Diana 757-358-0284


WESTERN VIRGINIARoanoke Self Help GroupFourth Thursday: 6:30- 8 pmRoanoke Valley Association of Realtors (RVAR)4358 Starkey Road, Roanoke VALeader : Suzanne 540-404-1167 or [email protected]’s Talk MS Support Group Third Wednesday: 12-1 pmBedford Baptist Church, 1516 Oakwood St, Bedford City, VALeader: Annette 540-587-5356 or [email protected]/Rockbridge Self Help GroupSecond Thursday: 5:30 pm-7 pmRE Lee Memorial Church (Library)123 W Washington St, Lexington City, VALeader: Susan 540-460-7091 or [email protected] Options Support GroupSecond Tuesday: 12-1 pmMeadows Presbyterian Church 2200 Angus Road, Charlottesville, VALeader: Lisa 434-296-5964 or [email protected] Lunch Bunch Fourth Thursday: 11:30 am-1 pmMartha Jefferson House1600 Gordon Ave, Charlottesville, VALeader: Kitty 434-293-3573 or [email protected] River Valley Support Group First Tuesday: 6:30-8 pmMontgomery County Dept. of Social Services210 Pepper St S Ste B, Christiansburg, VA Leader: Jeff 540-230-3430 or [email protected] Mountain Lake Self Help Group First Wednesday: 12-1 p.m. 15353 Moneta Rd, Moneta, VALeader: Ken 540-576-3330 or [email protected] County MS Support Group Third Thursday: 6-8 pmAugust County Library, 1759 Jefferson HwyLeader: Sandra 540-294-3063 or [email protected]: Cheryl 804-678- 8280 or [email protected]

**NEW GROUP** Care Partner Support GroupLast Thursday: 6:30-8pmNational MS Society, Virginia - West Virginia Chptr. Charolttesville Office Conference Room1020 Carrington Place, Ste. 100, Charlottesville, VALeader: Ray 434-962-5643 or [email protected] County MS Support GroupSecond Tuesday: 7:00pmCarroll County Public Library 101 Beaver Dam Road, Hillsville, VALeader: Regina 276-766-9228Peer Assisted and Led Support Group (PALS)Second Monday: 6:15pm1820 Heritage Center Way, Harrisonburg, VALeader: Carol 540-432-9858

WEST VIRGINIAMade Strong Support GroupThird Thursday: 6-7:30 pm200 Fernandez Drive, Beckley, WV Leader: Melinda 304-890-6284 or [email protected]’s MS Support GroupSecond Monday: 7:00pmEmmanuel Baptist Church1401 Washington Street W., Charleston, WVLeader: Jan 304-744-1994Bluefield/Princeton Support GroupLast Tuesday: 7:00pmCall for locationLeader: Doug 304-753-9126

ADDITIONAL SUPPORT OPPORTUNITIES

ON THE PHONEMSFriends: Peer Telephone Support866-673-7436, 9 am–Midnight ET

CHAT ROOM & BOARDSMSWorld- www.MSworld.org

ONLINE PEER CONNECTIONSMSConnection- www.MSconnection.orgConnect 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).

NationalMultiple SclerosisSocietyVirginia - West Virginia Chapter

4200 Innslake DriveSuite 301Glen Allen, VA 23060

WE MOBILIZE PEOPLE AND RESOURCES TO DRIVE RESEARCH FOR A CURE AND TO ADDRESS THE CHALLENGES OF EVERYONE AFFECTED BY MS.

CONNECT WITH US AT WALK MS AND BIKE MS:

Walk MSSee page 07 for a full list of Walk MS dates.

Register today at walkMS.org.

Bike MSSee page 04 for a full list of Bike MS dates.

Register today at bikeMS.org.

MS CONNECTION VIRGINIA - WEST VIRGINIA C … · spring 2015 ms connection virginia - west virginia c hapter newsletter inside this issue 03 ms awareness week— march 2-8, 2015 07

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