WINTER 2013-2014 CENTRAL & EASTERN VIRGINIA CHAPTER
MS CONNECTION NEWSLETTER
BIKE MS PAGE 04 INSIDE 03 THIS ISSUE
MS AWARENESS WEEK-MARCH 3-9, 2014
MAKE A DIFFERENCE PAGE 07 10 11 14 WOMEN ON THE MOVE WANT YOU
BECOME A MOVEMENT ABMASSADOR
CHAPTER SENDS LOCAL TEEN TO SUMMER CAMP
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CHAPTER NEWS
LETTER FROM THE PRESIDENT
When I was in college, I walked into a very large room that hosted our computer. I was told that someday this massive machine that took up the majority of the room would eventually sit in peoples offices. Thirty years later, it not only sits on my desk, but also in my hand. I crave connectivity! In a recent survey, it was reported that 94% of those living with MS used a computer daily. That is 14% more than the general population.
At the MS Society, it is our goal to keep you connected not only locally, but regionally, nationally, and globally. No doubt social networks continue to play an increasingly important part in many people’s lives. Facebook and Twitter have connected the world with 845 million active users, and twitter is four times larger than Facebook. Another worthwhile note is that 18 million Americans text more than they make phone calls. I want to personally invite you to connect with us and be a fan on our Facebook page and follow us on Twitter so we can keep you connected and informed through blogs and information sharing about therapies, programs, services, and research. Think about the possibilities in spreading the good work we are doing in Central & Eastern Virginia and the worldwide connections to join in the fight against MS. Like us on Facebook and ask others to like our page: www.facebook.com/MSCentralEasternVA I look forward to being connected with you, where together, we will find a cure!
Sherri Ellis Chapter President
FIND US BE SEARCHING: MSCENTRALEASTERNVA
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NATIONALMSSOCIETY.ORG | 1-800-344-4867
CHAPTER NEWS
MS AWARENESS WEEK—MARCH 3-9, 2014
Every year the National MS Society uses one week in March to host awareness activities. This year is no different and the chapter is looking forward to partnering with you to raise awareness of multiple sclerosis and the National MS Society, Central & Eastern Virginia Chapter.
FUN WAYS TO RAISE AWARENESS: • • • • • •
Plan to wear orange the entire week Organize a “Wear Orange” day at your work or school 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—don’t forget to share it with us on Facebook!
WHAT WILL YOU DO TO ENGAGE, CONNECT, INSPIRE AND RAISE AWARENESS? Do you have great ideas to increase awareness in your community? Want to get involved? Contact Jessica Ramirez at jessica.ramirez@nmss.org or share your idea or activity on our Facebook page.
NATIONAL MULTIPLE SCLEROSIS SOCIETY CENTRAL & EASTERN VIRGINIA CHAPTER Richmond Office: 4200 Innslake Drive, Suite 301 Glen Allen, VA 23060 Virginia Beach Office: 760 Lynnhaven Parkway, Suite 201 Virginia Beach, VA 23452 1-800-344-4867 • www.MSVirginia.org Chairman: Frank N. Cowan Chapter President: Sherri Ellis Design: Robyn M. Hirsch © 2013 National Multiple Sclerosis Society, Central & Eastern 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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EVENTS
TWO GREAT RIDES IN 2014 AN UNBELIEVABLE DESTINATION—A WORLD FREE OF MS ABOUT BIKE MS: VIRGINIA’S OCEAN TO BAY RIDE
Date(s): May 31-June 1, 2014 Start/Finish Location: Cape Charles, VA Overnight Location: YMCA Camp Silver Beach (Jamesville, VA) Route Options: One or Two Days; 36, 75 and 100 each day Registration: $34 plus accommodations through 1/12/14 Fundraising Requirement: $300 minimum
ABOUT BIKE MS: RIDE VIRGINIA
Date(s): September 6-7, 2014 Start/Finish Location: Richmond, VA Overnight Location: DoubleTree by Hilton Hotel (50 Kingsmill Rd., Williamsburg, VA 23185) Route Options: Two Day: 75 or 100 miles each day; One Day: 25 or 50 miles Sunday Registration: $30 plus accommodations through 1/12/14 Fundraising Requirement: $300 minimum Each ride is fully supported with rest stops, Support and Gear (SAG) vehicles, medics, and bike support from sponsoring bike shops. The sense of accomplishment that you’ll feel as you cross the finish line can only be matched by the knowledge that you are making a difference in the lives of those affected by MS.
JOIN THE MOVEMENT & REGISTER TODAY
Register online at www.irideforms.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.
Scan this QR code to visit the bike MS website.
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PROGRAMS
CHAPTER NEWS
2014 EMPLOYMENT SCHOLARSHIP TELECONFERENCE PROGRAM IS SERIES STILL ACCEPTING APPLICATIONS MS can have a significant impact on every aspect of life, including the world of work. Therefore, we are pleased to offer you a series of 4 teleconferences on a variety of employment topics. Each teleconference will run on a Thursday night from 7-8 pm and is accessible via a toll-free number. • Maintaining Cognitive and Emotional Health While Unemployed—February 20 • Federal Hiring Initiatives for People with Disabilities—March 6 • Home-Based Employment: What You Need to Know—March 20 • Social Security Disability Application Secrets—April 3 For more information or to register, call the Chapter at 1-800-344-4867 option 1 or visit www.MSVirginia.org.
The National MS Society awards scholarships to highly qualified applicants who have been diagnosed with MS or have a parent/guardian living with the disease. Awards range from $1,000–$3,000 and are awarded to collegebound students who demonstrate financial need, a strong academic record, leadership, community involvement, and how MS has impacted their lives. Applications are accepted until January 15, 2014. Apply online at www. nationalMSsociety. org/scholarship. Note only completed online applications will be accepted. The National MS Society Scholarship program is supported by funders like you! Did you know you or your company can sponsor a scholarship and help make a difference in a student’s life? Contact Kathryn Zapach at kathryn.zapach@nmss.org or 804-591-3039 to learn more.
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ADVOCACY
VIRGINIA VIRTUAL ACTION DAY-JANUARY 27
The three Virginia Chapters of the National MS Society are hosting our annual State Action Day on January 27, 2014. MS Activists from all over the Commonwealth will travel to Richmond to meet with their state legislators and advocate for people living with MS and their families. State Action Day is an excellent way for you to voice your concerns, share your story and impact legislation that could potentially change the lives of many people living in Virginia. If you are interested in participating in Action Day and our advocacy training on January 26th, please contact Kathryn Zapach at kathryn.zapach@nmss.org or 804591-3039. If you are unable to travel to the General Assembly Building in Richmond, we invite you to participate in our Virginia Virtual Action Day from your office or home! Join the movement and be an MS Activist from wherever you are on January 27th by participating in the event online. As a virtual participant, you will receive real-time updates from those in Richmond from our Facebook group and our Twitter feed. You will be invited to spread the word about MS issues by updating your own Facebook status, Tweeting, or writing a blog entry. We’ll even provide some sample status updates and blogs to get you started. You can also share your own experience with MS by e-mailing your legislators directly. If you are interested in participating in our Virtual Action Day, please e-mail Statewide Advocacy Manager, Ashley Chapman at ashley.chapman@nmss.org.
JOIN US FOR VIRGINIA STATE ACTION DAY ON JANUARY 27, 2014 FROM WHEREVER YOU ARE. TOGETHER, WE CAN HELP SHAPE POLICIES TO BENEFIT PEOPLE WITH MS AND THEIR FAMILIES.
NATIONALMSSOCIETY.ORG | 1-800-344-4867
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WAYS TO GIVE
MAKE A DIFFERENCE
“My mom has MS.” This is a statement made by many children attending this year’s Kids Camp at Camp Jumonville in Hopwood, PA. It’s not a statement many kids share openly and, hopefully, when a cure is found, it will be a statement a child never says again. As we push for a cure, we also work to meet the needs of people living with MS. Our chapter dedicates its resources to financial assistance, home and auto modifications, durable medical equipment, Kid’s Camp, and Holiday Families program. To ensure we continue to meet the needs of everyone affected by MS, we need your help. During the season of giving, we hope you will consider us, and more importantly the families we serve, with a charitable gift. There are many ways to give. You can make an end of year contribution directly to our office by mailing in a check or by making a donation through our chapter’s website (www.MSVirginia.org). You can also direct your funds within the chapter—such as general donation, research, scholarships, Kid’s Camp, or financial assistance. Did you know that you may be able to give through your employer? And, that many employers have matching gifts programs? Here’s how:
COMBINED FEDERAL CAMPAIGN (CFC): Central Virginia: 46654 • Hampton Roads: 48028
UNITED WAY CODES: Greater Richmond & Petersburg: 3025 • Rappahannock: 6049 Hampton Roads: Write In National MS Society on the Pledge Card
COMMONWEALTH OF VIRGINIA CAMPAIGN (CVC): Central Virginia Federal: 46654 • Central Virginia State: 6090 Hampton Roads Federal/State/City Employees: Look for Multiple Sclerosis Society, National and mark your card accordingly or just WRITE IN National Multiple Sclerosis Society #6049 Please join us in helping our community during the holiday season and to find a cure so that one day a child never has to say, “My mom has MS.”
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MS CONNECTION: WINTER 2013-2014
TAKING STEPS TO END MS
Scan this QR code to visit the walk MS website.
Walk MS is coming soon to a community near you! Believe it or not, spring is just around the corner and that means it’s Walk MS time! We have already started rallying our team captains and sponsors as we enter the new year, but we need YOU! Walk MS is a place for all of us to gather and rally as we move towards our goal of a world free of MS.
THIS IS OUR TIME TO UNITE, STAND STRONG, AND RAISE CRITICAL FUNDS TO SUPPORT RESEARCH, EDUCATION, AND ADVOCACY.
REGISTER, INVITE YOUR FAMILY AND FRIENDS, AND START FUNDRAISING TODAY!
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WAYS TO GIVE
AUTOS-4-MS
When you donate your car, truck, motorcycle, boat or trailer to the National MS Society, you can feel good knowing that 100% of the proceeds go directly toward benefitting people with MS. Proceeds fund vital research into the cause, cure and treatment of MS, as well as programs and services for people living with multiple sclerosis.
TO START THE DONATION PROCESS: • Call our toll-free number, 1-877-672-8864, or submit the electronic donation form found at www.AUTOS4MS.org
EVENTS
WHO SAYS YOU CAN’T DIY?
Have you always wanted to throw a party, plan something fun, and get a bunch of people together to do something good? Host a Do It Yourself Event to benefit the Central & Eastern Virginia Chapter. We provide a Do-It-Yourself webpage filled with lots of tips and tools to help you organize your event and we will support you along the way.
• A towing company will contact you to schedule your pickup
Example DIY events:
• A receipt will be mailed to you after the completed sale transaction of the vehicle.
• Golf Tournament
• 5K Run
• Poker Run For answers to all your questions, please visit www.AUTOS4MS.org or call our office at 1-877-672-8864.
• Craft Show • Dinner Party
NO MATTER WHAT THE EVENT, YOUR SUPPORT AND CONTRIBUTION MAKE A DIFFERENCE! For more information, visit the DIY page on our website, www.MSVirginia.org, or contact Tiffany Epley at 804-591-3036 or tiffany. epley@nmss.org.
10 EVENTS
WOMEN ON THE MOVE WANT YOU
In 2014, we are hosting two Women on the Move events that honor and recognize outstanding individuals who have made an exceptional contribution to their community. We are thrilled to announce that David Osmond will be our keynote speaker for our Virginia Beach luncheon. David Osmond, nephew of Donny and Marie, is a singer/songwriter who lives with MS and shares his inspirational story.
VIRGINIA BEACH, VA: TUESDAY, JUNE 10, 2014 RICHMOND, VA: THURSDAY, JUNE 12, 2014 We are currently looking to grow and build planning committees in Virginia Beach and Richmond. If you are interested in volunteering your time and resources to help plan one of these exciting events, or would like information on becoming a sponsor, or purchasing a table or tickets please contact Tiffany Epley, Development Manager at tiffany.epley@ nmss.org or 804-591-3036.
MS CONNECTION: WINTER 2013-2014
VOLUNTEER
MAKE A DIFFERENCE WHILE LEARNING NEW SKILLS
Build real-world skills while helping create a world free of MS. The Chapter is looking for qualified full or part time college students to intern. Internships are available in a variety of fields. Positions are unpaid, but the experience will be invaluable! Academic credit/community service credit is available.
AVAILABLE INTERNSHIPS: • Business Administration • Client Programs (Social Work) • Communications/Public Relations • Corporate Relations • Special Events • Volunteer Program Management Contact Deborah Richards at 804-591-3034 or by email at deborah.richards@nmss.org if you are interested in rounding out your education or if you know a student who may be interested.
NATIONALMSSOCIETY.ORG | 1-800-344-4867
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PROGRAMS
BECOME A MOVEMENT AMBASSADOR INSPIRE. EDUCATE. MOVE.
Educating and engaging thousands of people in the movement to end MS is a big job and the National MS Society, Central & Eastern Virginia Chapter can’t do it alone. That’s why we are recruiting volunteers for our Movement Ambassador Program.
WHAT IS A MOVEMENT AMBASSADOR?
Simply put, Movement Ambassadors are people who want to do something now to end MS and are passionate about engaging other people in the movement. Movement Ambassadors are people connected to MS in some way, whether by living with the disease, participating in our events, volunteering or donating to our organization. Individuals in each one of these groups has a story to tell and can be a part of our mission!
HOW DO MOVEMENT AMBASSADORS HELP?
The primary role of Movement Ambassadors is to engage others. Movement Ambassadors can do a wide range of awareness activities from simply talking to someone about your involvement with the National MS Society to manning information tables at local health fairs and providing presentations to community groups. Movement Ambassadors act as an army of people spreading awareness about MS and the National MS Society in our local community.
HOW CAN I BECOME A MOVEMENT AMBASSADOR?
If you are interested in becoming a Movement Ambassador or would like more information, please call or email Robyn Hirsch at 757-319-4252 or robyn.hirsch@nmss.org. Interested volunteers will be trained to be spokespersons representing the National Multiple Sclerosis Society, Central & Eastern Virginia Chapter and will be provided with all needed guidelines and materials.
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EMPLOYMENT
WORKING WITH MS: DON’T DO IT ALONE RESOURCES AVAILABLE TO ASSIST YOU
Are you considering changing jobs? Are you looking for that next step in your career ladder? Have you been out of the workforce but thinking about returning to work? Do you have questions about disclosure in the workplace or how to accommodate your symptoms on the job? Employment issues can arise any time there is a change in your work situation or a change in your MS. When faced with employment questions, it is important to know that there are several resources available to help. The National MS Society can address employment questions and can refer you to employment resources. Employment-related publications are also available. Call 1-800-3444867 to speak with an MS Navigator or visit www.nationalMSsociety.org/employment. The Job Accommodation Network (JAN) is a free service of the U.S. Department of Labor Office of Disability Employment Policy. JAN provides technical assistance and support regarding accommodations, the Americans with Disabilities Act (ADA), disclosure, and self-employment for people with disabilities. JAN can be reached at 1-800-526-7234 or visit http://askJAN.org for a wide variety of resources and publications.
Each state has a vocational rehabilitation (VR) agency whose goal is to assist individuals with disabilities to gain and maintain employment. For a full listing of vocational rehabilitation agencies, visit http://askjan.org/cgi-win/ TypeQuery.exe?902. Employment services are also available from your local one-stop employment center. The goal of the one-stop is to assist job seekers, with or without disabilities, in finding employment. If you choose to self-identify that you are living with MS, the office may be able to provide some additional support services. To find your closest one-stop employment center, visit http://www.servicelocator.org/. Oftentimes, people with MS who are seeking employment would prefer to work for employers who may be doing targeted outreach to job seekers with disabilities. It is important to remember that you must still be qualified for the jobs for which you are applying.
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The employers on these sites may be recruiting through these resources in order to increase diversity in the workplace. There are several job boards that post jobs from employers who are actively recruiting people with disabilities, including the following: • Equal Opportunity Publications (EOP) Career Center-http://www.eop.com/ career.php • GettingHired-http://www.gettinghired. com/ • National Business & Disability Council (NBDC)-http://www.viscardicenter.org/ services/nbdc/ Please be aware that the National Multiple Sclerosis Society does not endorse these sites but shares them because they are considered valuable information. You may want to include them in your job search and add them to the sites you visit when looking for available positions.
WORKING WITH MS IS POSSIBLE AND YOU DON’T HAVE TO DO IT ALONE. GET CONNECTED TO RESOURCES TO STAY ON TOP OF YOUR EMPLOYMENT OPTIONS.
AWARENESS ACTIVITIES
NORFOLK ADMIRALS MS AWARENESS NIGHT
Come out and join us on March 7, 2014 for our second annual MS Awareness Night with the Norfolk Admirals— and don’t forget to wear orange! Advanced tickets are available at norfolkadmirals.com through group events, code MS14. 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 robyn.hirsch@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.
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PROGRAMS
CHAPTER SENDS LOCAL TEEN TO SUMMER CAMP Each summer, the MS Society of Canada offers a youth camp for children, teens, and young adults who live with MS. Campers aged 8–21 travel from all over the world to attend. Local teen Jade has attended summer camp each year since 2010. In 2013, our Chapter sponsored Jade’s flight to Canada for camp. Jade told us she enjoyed participating in numerous activities such as rafting, ziplining, hiking, crafting, playing music, toasting marshmallows, swimming, and dancing. Most of all, Jade said, “The best thing about Teen MS Camp is you get to meet people your age with MS. They are going through the same thing as you. You don’t feel alone. We are like family.” Jade told us she has made enduring friendships at camp and keeps in touch with fellow campers throughout the year. For those whose lives are affected by MS, connecting with others and sharing stories and experiences is vital. This is especially important for young people beginning the transition from childhood to adulthood. For children and adolescents, social connections like those Jade has made at camp are crucial for building self-esteem. Jade was diagnosed at age 10 and is now 17. She told us that MS has been a challenge for
her socially because sometimes others do not think she appears to be sick. “They always think you’re faking or making up symptoms,” she said. Jade offered us some thoughts from others she has connected with about what it’s like to be a teen with MS: • “Just because they look healthy does not mean they don’t struggle every day.... please don’t forget they still need their friends.” • “[They] are normal teens, they will still be kids. They will live normal and productive lives. We remain positive and educated!” • “Their friends would understand that MS is not contagious and they still need their friends.” We are proud to have sponsored Jade’s trip to camp and are thrilled that she had this to say: “I would encourage others to try MS camp at least once. You get to know others with MS and make connections. MS Teen camp isn’t for everyone but I can say I LOVE IT and I’m so glad I went the first time and I will keep going until I can’t go anymore.”
NATIONALMSSOCIETY.ORG | 1-800-344-4867
PROGRAMS
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PROGRAMS
FINANCIAL A SPECIAL THANK YOU! ASSISTANCE The chapter provides shortterm, limited, and reasonable financial assistance to address the specific challenges that living with MS can cause.
CATEGORIES:
• Emergency Assistance • Independent Living Needs • Home & Vehicle Modifications • Mental Health Needs • Physical Health Needs • Wellness Programs • Durable Medical Equipment/ Assistive Technology
To learn more contact the chapter 1-800-344-4867 option 1.
WE ARE DEDICATED TO REACHING OUT TO INDIVIDUALS AND FAMILIES LIVING WITH MS AND TO MEETING THEM AT THEIR POINT OF NEED.
Just a quick note to let you all know how much I appreciate receiving this trike [through the chapter’s financial assistance program]. It was delivered to me and I immediately went for a spin—yes, I’m sore and I will have to work on my strength and balance. I thank you all and the National MS Society for this fantastic gift. It was recommended by my Neurologist and my Physical Therapist and your help [...] was great. Again, you have made me very happy and hopefully my stamina and balance will increase to a greater level than it is at present. Sincerely, Marion Talken
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MS CONNECTION: MS CONNECTION: WINTER 2013-2014 FALL 2013
EVENTS
STAIR CLIMB MS—REACHING NEW HEIGHTS stair climb
We asked you to skip the elevator and take the stairs for an unbelievable view–a world free of MS! This year we hosted our 3rd Stair Climb MS at a new venue, the Oceanaire Resort Hotel, on Saturday, November 16. We had over 50 participants climb 16, 32 or 64 flights of stairs. Some participants climbed because they had a connection to MS and some climbed because of the challenge. It all went to support those living with MS in the Central & Eastern Virginia area. To date we have raised over $14,000 and climbers have until January 17, 2014 to collect additional donations.
AWARD WINNERS Fastest Overall Climber – Male Fastest Overall Climber – Female Largest Team Fastest Team
THANKS TO OUR SPONSORS: Rich Williams Michele Hessel Greater Than > Average Joes
• Oceanaire Resort Hotel • Go Time! • Genzyme • Questcor • 94.9 the Point
THANK YOU TO ALL THE CLIMBERS WHO CAME OUT TO SUPPORT 2013 STAIR CLIMB MS! WE CAN’T WAIT TO SEE WHAT WE CAN DO IN 2013. TEAM: GREATER THAN >
BENJAMIN NJAMIN BLOW BLOWE
TRINETTE REESE
TEAM: M AVERAGE JO JOES
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EVENTS
DINNER OF CHAMPIONS
The 28th Annual Dinner of Champions was held on October 1, 2013 at The Jefferson Hotel in downtown Richmond. Over 200 attendees showed their support for this year’s recipient of the Norman Cohn Hope Award, Charles S. Luck, III, Chairman of the Board, Luck Companies. The Hope Award is the most prestigious National MS Society volunteer award at the chapter level and is presented to someone who has maintained an exceptional leadership role in the community. They exhibit vision, extensive civic voluntary action, and exemplify hope for a future free of MS.
DINNER CHAIR, G. GIL MINOR (L) Charles was named President of his family company in 1965 AND THE 2014 RECIPIENT, CHARLES and during his 30 year tenure led the company through S. LUCK, III (R) expansion and technological advancement. Today, as the Chairman of the board he is a member of the Strategic Leadership Team which is guiding the transformation of the enterprise into a global, values-based organization. The Dinner Committee, under the leadership of G. Gilmer Minor, of Owens & Minor, secured sponsorships and donations totaling $355,555.55 (in honor or Charles’ 1955 graduation from VMI). Presenting Sponsors included: Bon Secours Richmond Health System, Charlotte and Gil Minor, Dominion, The Gray Family, Luck Companies, Mr. and Mrs. Bruce Gottwald, Sr, NewMarket and Owens & Minor.
Knowledge Is Power is a six-week, free, at-home educational program for people who are newly diagnosed. Mail or email formats. To register, call 1-800-344-4867, or visit www.nationalMSsociety.org/knowledge.
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RESEARCH
STUDYING ACCESSIBLE HOUSING Affordable, accessible housing is a crucial need for many people who have advanced multiple sclerosis. For Malachy Bishop, PhD, CRC (University of Kentucky), who was funded by the Society’s Health Care Delivery and Policy Research Program to study housing needs, the issue became personal when his father’s mobility was affected by a neurological condition similar to MS.
HOW DID YOU BECOME INTERESTED RESEARCHING HOUSING AND PEOPLE WITH MS?
I have always been very interested in the ways that people learn to live and thrive with chronic neurological conditions. I had been researching aspects of living with MS for several years, but after seeing the effect that my father’s increasingly limited mobility had on both my parents, understanding and addressing the specialized housing needs of people with MS became very important to me personally. Although housing was a new research area for me, I was fortunate to work with my coinvestigator, Dr. Kathy Sheppard-Jones, who is a leading researcher in this area.
HOW DID YOU CAPTURE THE VARIETY OF PEOPLE’S EXPERIENCES OF MS?
We actively involved people with MS in the design of the survey. Then, with the help
of housing consultants and MS experts, we traveled around the country to meet with diverse people with MS and health care professionals. We would discuss their perspectives, review the survey together, and make sure we were addressing all the issues that were important to them. We revised the survey many times based on their feedback. We also made sure people could complete the survey in different ways, including web-based surveys, mail-in surveys, and by telephone interview. This helped us get information from people in different age groups. Finally, we surveyed people in every state, so we could explore different regional experiences.
WHAT WERE SOME OF YOUR MORE STRIKING FINDINGS?
First, there is a large number of Americans with MS whose independence is affected by limited mobility. Approximately 7 out of 10 people
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reported some degree of mobility limitation that affected their ability to function in their homes and participate in their communities. Also striking was the number of people who live in inaccessible homes. About 1 in 5 Americans with MS said they are limited in their home because it is not accessible. Although there are many programs and resources available to help people afford making their homes safer and more accessible, most people were unaware of them. This is critical, because more than a quarter of participants said that their financial situation has prevented them from making needed modifications. Of particular note was the high number of people who said that they need, but do not have, safety features such as grab bars in the bathroom (15.2%), or such basic necessities as an accessible bathroom, kitchen, or entrance to their home (about 10% each). Finally, we found that regardless of the severity of the MS, people whose residence was fully accessible reported a higher quality of life and were more confident that they would be able to live independently in their home in the future.
[THE STUDY] FOUND THAT [...] PEOPLE WHOSE RESIDENCE WAS FULLY ACCESSIBLE REPORTED A HIGHER QUALITY OF LIFE AND WERE MORE CONFIDENT THAT THEY WOULD BE ABLE TO LIVE INDEPENDENTLY IN THEIR HOME IN THE FUTURE.
WHEN SHOULD PEOPLE WITH MS START THINKING ABOUT HOUSING?
We recommend that housing accessibility be a consideration in any long-term housing decision at any age, but this is especially true for people with MS over the age of 50. People over 50 were significantly more likely to report having a mobility limitation, to be limited in their residence, and to say they are not confident that they will be able to continue to live independently in their residence in the near future. Accessible housing for people in or approaching this age group is important as their safety, mobility and independence in and around the home are at greater risk.
DO HEALTHCARE PROVIDERS HAVE A ROLE IN BRINGING UP THE TOPIC? Healthcare providers should absolutely have a more active role in evaluating residential accessibility and safety, and in providing specialized housing resources and information. This is one of the areas we hope to focus on in future research.
SOCIETY RESOURCES
The Society’s brochure, Affordable Accessible Housing: A Guide for People with MS, can help families living with MS evaluate their housing needs and better understand the range of housing options that are available to them. Go to www.nationalMSsociety.org/housing or call 1-800-344-4867 option 1 to request a copy.
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MEMORIAL & TRIBUTES
The Central & Eastern Virginia Chapter would like to sincerely thank the generous contributors who made memorial and tribute gifts between June 2013 and November 2013. The memory of a loved one, or the excitement of a special occasion, lives on through these thoughtful gifts.
MEMORIAL GIFTS
David Coaker James River Old Boys
James Matthew Blackwood Theodore Anderson
Virginia “Toni� Collingwood Kerr Family Trust Charles Rowe Geline Williams
Carolyn Bond Alpha Theta Master Chapter Richard Carlton Patricia Kemp Joan Carrithers Kathleen Brown Richard Dugger Anne Nelson Mary Oliver Pamela Peters The Purls J Ricapito John C Chewning Sandra Cantor David Checcino Irving Driscoll Ronald Jones Cheryl Matson P.E. Turner & Company Rebecca Thornton Bruce Tyler Gordon Wallace
Manda Lee Culver Davis Mary Cockrell Margaret Donnelly Meredith Strahan Elizabeth Ellen Evans Frances Granger Lola Cowan Ford Mizpah Chapter 32 OES Edwin L. Houchens Good News Bible Class Charles Owens Wayne Schmidt Michael J. Kelley, DDS Suzanne Russel Heath Allen Lewis Francine Hall Dr. Lilllian Lindemann Beverly Chamblin Dechra Veterinary Products, LLC
Jane Fawley R. Forsberg Karen Grimm J Ivey Ellen Lee Hermena Powell Rockharbor Church Emilie Webb Patricia Loomis Gwendolyn Betts Willis Hendricks John Magruder Sylvia Massie Margaret Norris Patsy Robinson Lauriel Turner Theodore S. LoPresti Cindy Neavin Richard G. Meyer Susan Axtell Sallie and Joe Cross Wanda Daniels Barbara Hager Anne Harder Shelby Hawthorne Elizabeth Melton Ruth Mullaney Kathy Nordeman Betty & Bob Orwoll
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NATIONALMSSOCIETY.ORG | 1-800-344-4867
Liza Potts Wendy Schultz Wubbels Mary Zachos Mason Harvey Moffet Harry Bybee Elizabeth Dashiell Robert Lankford Mallory Country Club Nancy Martone Kendall Ogren Brenda Smith Sara Van Hoose Mary Vester Karen Orlowski Shirley Colman Joyce Harrison Sysco Hampton Roads Miriam Triscritti Herb Videll Bob Wilkes Otis “Sonny” Patterson, Jr. HH Hunt Catherine Moore Ann Reed David Sims Nancy Woodson Ray Pratt Gail Patterson Cheryl Pritchard Child Welfare Unit Dorothy Quesenberry Agnes Brabrand James Harvell David Hawkins Willie Norfleet Carole Waters
Mandy Schmidt Dennis Allion Dr. Jane Silver Melissa Silver Martha Stewart E Baum Susan Bernhardt Anne Coon Elizabeth Goodbody Arlene Halsey Irene Hawker Michele Keller Candis Ramelli Douglas R Strother, Sr Antique Automobile Club of America Robert Fothergill Paul Virkler James Gundlach Rhoda Kennedy One Environmental Group LLC
TRIBUTE GIFTS Beverly Fox Arnold Slone Monica Burgess Marilyn Burgess Friends of Basil Charity Drive Patricia McKinley Nancy Dunston Nancy Pottratz Sharri Ellis Horace Tucker Lanny Sue Freeland Doris Cross Shirley Gelfand Anne Kamens Peter Griffin Geoffrey Griffin Liz Hamlett Patricia Israel
Nancy Thacker Wilcher Farmers Bank of Appomattox Jean Moore
Dot Hamphrey Gwendolyn Raub
Wiley J. Wilson Victory Chapter No. 16 O.E.S.
Jack Fox Arnold Slone
Christiana J. Worley C Worley The Rainbow Carol Left Behind Edwina Lacy Barbara Ross
Robert Heffington Edgar Dearth
Jerry Lewis Waring Claud Patricia Thornton Knight Athelia Knight Cara Olivo Betty Blasch Continued on page 23
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LIVING WITH MS
MS AND INCONTINENCE BY LONNY S. GREEN, M.D.
Bladder leakage, also known as urinary incontinence, affects millions of Americans. Fifty percent of U.S. women and 13 percent of U.S. men experience urinary leakage. The number is even higher in those suffering from multiple sclerosis (MS). It is estimated that at least 80 percent of people with MS experience problems related to bladder control. While urinary incontinence is very common, what many people don’t realize is that it is not something that they have to “put up” with; there are many treatment options available.
WHILE URINARY INCONTINENCE IS VERY COMMON, WHAT MANY PEOPLE DON’T REALIZE IS THAT IT IS NOT SOMETHING THAT THEY HAVE TO “PUT UP” WITH; THERE ARE MANY TREATMENT OPTIONS AVAILABLE. While there are a variety of bladder symptoms that people with MS experience, the majority of them stem from the fact that MS interrupts the messages that are sent between the brain and the bladder. This can cause problems with the response to the need to urinate. This article will focus on the symptoms as well as some new treatment options for those experiencing incontinence.
The symptoms of Overactive Bladder (OAB) include urinating frequently (more than eight times in 24 hours), a sudden urgent need to urinate, or both. When the urge to urinate is so great that there is leakage before getting to the bathroom we call this urge incontinence. A variety of treatment options for those who suffer from overactive bladder have been available for some time. These include exercises, diet and lifestyle modifications, physical therapy and medications. Recently two new options were introduced for those patients with MS who suffer from overactive bladder. The first is the drug Myrbetriq. The older medicines used to treat OAB would sometimes cause dry mouth, constipation or other side effects. In our clinical experience, Myrbetriq has not been found to cause any significant dry mouth or constipation. In the clinical studies performed for Myrbetriq, it reduced both the number of leakage episodes as well as the number of trips to the bathroom, all with minimal side effects. Botox–yes, the same Botox used to reduce the appearance of wrinkles – was approved by the FDA in 2012 as a treatment option for individuals with Multiple Sclerosis or other neurologic diseases who suffer from overactive bladder. Botox works by reducing bladder contractions, and possibly by decreasing the nerve signals that travel from the bladder to the brain, telling the brain that the bladder is
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full. The result is a decrease in the frequency of urination, and an elimination or reduction in leakage episodes. The injection of Botox into the bladder is very simple and is done in the office with little to no discomfort. Many patients note improvement in their symptoms as soon as a few days after the Botox injection. The improvement is often very dramatic and most patients are simply thrilled. The effect does wear off over time. Most patients do very well after the injection for six to 18 months. At that point, if needed, Botox may be injected again. The options above are just a few of the new treatments for overactive bladder and they represent the variety of solutions available. Just like any medical condition, it’s important to make an appointment with your health care provider so that together, you can determine the best course of treatment based on your individual health and medical history. Lonny S. Green, M.D. is a board certified urologist who specializes in urinary incontinence. He is a member of the American Urological Association, The Society for Urodynamics and Female Urology, and is the founder and director of Virginia Women’s Continence Center. He is an Associate Clinical Professor in the Department of Surgery at VCU Medical Center. Dr. Green resides in Richmond with his wife, six children and three dogs.
TRIBUTE GIFTS CONTINUED FROM PAGE 21 Nancy Pruitt Jackie McSherry Joan Roberts Janelle Langford Ann Romney Pamela Wiegand Mr. Snow for MS Chad Duncan Tara Giles Melissa Hayden Karen Jaramillo Tim Krems Janet Maloney Alexa Niggles Leonie & Gabriel’s Donation Fund Randall Colker
IF YOU WOULD LIKE TO MAKE A MEMORIAL OR TRIBUTE GIFT, PLEASE CONTACT THE CHAPTER AT 1-800344-4867 OPTION 2 OR VISIT WWW. MSVIRGINIA.ORG.
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CHAPTER NEWS
A HUGE THANK YOU TO OUR 2013 CHAPTER AWARD RECIPIENTS VOLUNTEERS OF THE YEAR MIKE & ALICE OLENIK
Mike and Alice became involved with Bike MS back in 2000. They have a very dear friend that was diagnosed with MS and they decided to do something to help. They started a Bike MS team and participated as cyclists for 10 years. Then in 2011 a knee surgery sidelined Alice and she decided to put her skills as a Medic to use. She started volunteering with the EMTs and greets cyclists with a smiling face every year. Mike soon decided that volunteering was a better fit for him too. In 2011, Mike stepped up and became our “go-to” guy. In 2012, we decided he would be a huge asset to the Bike MS Committee as the Route Coordinator. He accepted and has spent many hours on the Bike MS route coming up with efficient ways to mark the route and control all the challenges that a 150 mile route can present. But there is more, Mike and Alice come to Bike MS early to put out signs at the camp, flyers in all the cabins and check to make sure that everything is set for the cyclist’s arrival later that night. And then they break it all down on Sunday when everybody is gone and on the route.
There are good volunteers and then they are truly amazing volunteers like Mike & Alice! We could not imagine Bike MS without them.
CORPORATE SERVICE AWARD YMCA CAMP SILVER BEACH
One of this year’s Corporate Service Award recipients is an organization that has been a friend to the Chapter since 2005–YMCA Camp Silver Beach.
Since the very beginning, the Staff at Camp Silver Beach have gone out of their way to make everything perfect for Bike MS. They understand the importance of our event and it shows. From the moment we step on the property, they cater to our every need. There have been some changes in Staff at Camp Silver Beach, but the customer service has never been better. In a weekend full of little fires that need to be put out, they are there to help us work through it all. Thank you Mish, Jeremy, Danny, Jay and all the Staff at Camp Silver Beach for all you do to make our life so much easier Bike MS weekend. We are fortunate to have their support and commitment to the Chapter and Bike MS: Virginia’s Ocean to Bay Ride.
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MAKE YOUR MARK AWARD DEANNA DESCHENES
The “Make Your Mark” Award is an annual award given to those who have made a big impact on MS Awareness over the past year.
Deanna was diagnosed with MS in January 2005. She immediately connected with the National MS Society in her area and became very active with the local Chapter. When she moved back to Virginia in August 2010, it made sense for her to reach out to our Chapter. She formed the Movers & Shakers Walk MS team in 2011 and they have been walking in our Newport News Walk for the past three years and have raised close to $10,000. Deanna is constantly looking for other ways to become involved with our Chapter. She serves on our Walk MS Committee, volunteered at the summer Walks, participates in Stair Climb MS and is an MS Activist serving on our Government Relations Committee. For the second year in a row, Deanna traveled to Richmond in January for MS State Action Day and met with legislators about the importance of affordable medications, housing, and transportation. This year we were determined to host our “Flag Down MS” event during MS Awareness Week in March at a peninsula location. In 2012 we had tried without any success to secure a visible location. We let Deanna know this and she went to work immediately. She started looking and secured a highly visible location right next to Riverside
Hospital with the fee waived. For Deanna, no problem is too small and no obstacle is too big! Being a small Chapter, Deanna’s helping hands have been a tremendous asset. We truly could not do it without her. She is a good friend to the Chapter and an amazing woman!
ADDITIONAL RECIPIENTS: CHAMPION OF THE YEAR ARTHUR WHITE CHAMPION OF THE YEAR SCREENS N SUDS VOLUNTEERS OF THE YEAR THE POLK FAMILY CORPORATE SERVICES AWARD CARE ADVANTAGE MAKE YOUR MARK AWARD TERI GEORGE Our Chapter truly appreciates all of our dedicated volunteers. Volunteers are essential to our success. If you have some time during the week, we are always looking for extra help in the office. For information on how you can help, please contact Deborah Richards at 804591-3034 or deborah.richards@nmss.org.
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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. January 14 from 8–9 p.m.: New Year, New Changes: Tips on Daily Living with MS Are you empowered to make lifestyle changes at the start of a New Year, yet challenged by how to start? The New Year is a good reason to make changes, yet resolutions can also carry unrealistic expectations and unattainable goals. When faced with the stresses of everyday life, it can be difficult to stay resilient. Guest speakers will share and provide expertise on how to make positive changes happen for the start of 2014 that will feel realistic and encouraging. These changes will help you incorporate healthy eating habits into your diet and engage in meaningful daily activities to keep your mind and body healthy, energized and comfortable. To register visit www.mscando.org/multiple-sclerosis-programs/webinar-series/register or call 800-367-3101 x1281.
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SELF HELP GROUP LISTING FOR MORE INFORMATION CONTACT 1-800-344-4867 UNLESS OTHERWISE NOTED. CENTRAL VIRGINIA Hanover Group
Fourth Thursday: 7-8:30 pm Church of the Redeemer 8275 Meadowbridge Rd. Mechanicsville, VA 23116 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 Floor Classroom Leader: Quennette 434-246-6007, 804-731-9069 Chesterfield Day Group Third Wednesday: 12-1 pm Johnston-Willis Hospital, Board Room 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: Barbara 804-747-0298 Richmond Weekend Group (Formerly Richmond Evening 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: Judy 804-359-4093
Tappahannock Neurological Support Second Monday: 10:30 am (Call for Location) Leader: Margaret 804-472-4781 The Invincibles Third Tuesday: 7-8:30 pm HealthSouth Fredericksburg 300 Park Hill Drive Leader: Belinda 540-373-4377 Chronically Awesome For those living with MS, Lupus, Lyme and their caregivers/partners (Call for full list of Dates) First Wednesday: 6-8 pm Grace Episcopal Church 303 South Main St., Kilmarnock, VA Leader: Teri 804-436-4750
EASTERN VIRGINIA Chesapeake Group
(No Dec. Meeting) Third Tuesday: 7 pm Lifestyle Fitness Center at Chesapeake Regional Medical Center 800 N. Battlefield Blvd., Chesapeake, VA Leader: Margie 757-633-4593 Suffolk Group Third Wednesday: 6:30 pm Magnolia United Methodist Church 1764 Wilroy Road, Suffolk, VA Leader: Willie Ann 757-539-0139 Southside Group (No Dec. Meeting) (Call for full list of Dates & Locations) Fourth Wednesday: 3 pm Meyera E. Oberndorf Central Library 4100 Virginia Beach Blvd., Va. Bch. Gloucester Group First Wednesday: 10:30 am Riverside Wellness and Fitness Center 7516 Hospital Drive, Gloucester, VA
African American Inspirational Group First Thursday: 11 am Hampton Public Library 936 Big Bethel Road, Hampton, VA Leader: D’Andre 757-660-3455, deejazzu44@aol.com Co-Leader: VeeGee 757-696-2540, veegee215@yahoo.com Peninsula Evening Group Second Thursday: 5:30 pm Sentara Careplex Hospital (York River Entrance, Conf. Rm. C) 3000 Coliseum Drive, Hampton, VA Leader: Diana (757) 358-0284
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 MSConnectionwww.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). My Solutions- Facebook Support Group for Young Adults in their 20s & 30s in Chapter area To sign up, visit: http://bit.ly/ MySolutionsMS or contact at Jessica 804-591-3038.
National Multiple Sclerosis Society Central & Eastern Virginia Chapter 4200 Innslake Drive Suite 301 Glen Allen, VA 23060
Like Us: MSCentralEasternVA
Find us on Twitter: @MSCentralVA
CHAPTER STAFF
Ashley Chapman, Senior Manager, Statewide Advocacy: 804.591.3048 Michelle Derr, Vice President, Finance and Operations: 757-319-4251 Sherri Ellis, Chapter President: 804.591.3030; 757.319.4254 Tiffany Epley, Manager, Development: 804.591.3036 Matt Gregory, Associate, Customer Service & Data: 804.591.3041 Robyn M. Hirsch, Director, Communications & Marketing: 757-319-4252 Clare Lorio, Manager, Development: 804.591.3037 Karla McCarraher, Director, Development: 757-319-4253 Robert McKoy, Executive Vice President of Operations and Chief Financial Officer: 443.641.1206 Diana Oakley, Senior Manager, Accounting: 804.591.3042 Jessica Ramirez, Manager, Programs & Services: 804.591.3038 Deborah Richards, Associate, Revenue Accounting & Volunteer Engagement: 804.591.3034 Kathryn Zapach, Director, Programs & Services: 804.591.3039
PICTURED ABOVE: JESSICA RAMIREZ
WE MOBILIZE PEOPLE AND RESOURCES TO DRIVE RESEARCH FOR A CURE AND TO ADDRESS THE CHALLENGES OF EVERYONE AFFECTED BY MS.