MOVING TOWARD A WORLD FREE OF MS | Fall 2009
Miles of Scarves for MS 8 girls 9 to 12 years knitting to make a difference. project name:
Miles of Scarves for MS Donate $1 Get 1 Row of a Scarf Goal:
1500 Rows $1500 Benefit:
Bike MS 2010
In late August, Marty Polk came across an article in “Heifer International Magazine” about the world’s longest scarf that was knitted to raise money to feed people around the globe. Marty shared the story with her daughter, Meredith who enjoys knitting. After some discussion, Meredith suggested that maybe she and some of her friends could knit scarves to raise money too. Her mother asked what they would do with the money and Meredith’s response was, “give it to the MS Society!” continued on page 3
INSIDE THIS ISSUE
Advocacy Page 4
Caregivers Month Page 8
Research Page 11-12
Dinner of Champions Page 13
Central Virginia Chapter 2112 W. Laburnum Ave. Suite 204 Richmond, VA 23227 (804) 353-5008 www.MoveVA.org
Board of Directors Mark B. Hubbard • Chairman Gregory Bishop • Chairman Elect David H. Carminucci • Chairman Emeritus Blake Manners • Treasurer Suzanne Gardner • Secretary Ira Rosenfeld Jennifer Bittmann Jeffrey Ruskan Jeanne Carvency David Saunders Frank Cowan Alexander Slaughter Mark Householder Jim Sok Tracey Jeter Gary Wallace Ashley Johnson Kyle Yocom Dr. John O’Bannon Gerald Zerkin Ray Paul, Jr. Staff Sherri Ellis
Chapter President - (804) 591-3030
Judy Griffin
Director of Operations and Mass Market Events - (804) 591-3034
Andy Page
Director of Community Development - (804) 591-3036
Donna Clements
Manager of Client Services - (804) 591-3039
Ron Bergman
Manager of Finance - (804) 591-3042
Lisa Simpich
Development Coordinator and Systems Administrator - (804) 591-3041
Linda Pretlow
Executive Assistant - (804) 591-3037
Grace Phillips
Database Coordinator - (804) 591-3040
Melanie Hofe
Finance Assistant - (804) 591-3031
Ashley Chapman
VA Statewide Advocacy Manager - (804) 591-3048 *Please Note these are direct phone numbers for staff. The Main Office phone number is still (804) 353-5008 or 1-800 FIGHT MS.
If You or Someone You Know Has MS . . . Studies show that early and ongoing treatment with an FDAApproved therapy can reduce future disease activity and improve quality of life for many people with Multiple Sclerosis. Talk to your Health care professional or contact the National MS Society at www.MoveVA.org or try our Office Phone at (804)353-5008 to learn about ways to help manage Multiple Sclerosis and about current research that may one day reveal a cure.
From the Chapter President…
MS Educational Scholarships are among the most rewarding ways in which the National Multiple Sclerosis Society helps families who are affected by MS. MS can be a great burden to a family, both emotionally and financially. The economic impact is substantial. Direct and indirect costs, including lost wages (even for those who have insurance), are estimated at more than $69,000 annually, with a total lifetime cost per family of $3 million. These challenges make funding a college education that much harder. We shouldn’t let the disease stand in the way of an education. We’re hopeful that even modest scholarships will help families in covering some of the costs associated with college and allow students to achieve their dreams. Educational Scholarships are awarded each year to students who are pursuing a college or technical school education and who have a parent with MS or who themselves have MS. Applications are evaluated based on financial need, academic record, leadership and volunteer activities, a statement of educational and career goals, and letters of recommendation. Applicants are also asked to provide a personal statement describing the impact MS has had on their life. These scholarships are funded by individual and corporate donations through our Golden Circle Annual Giving Campaign. In 2008, we established the Arnie Snukals Scholarship. Last year, the Central Virginia Chapter funded 4 awards totaling $6,500. We want to continue growing our scholarship program. Therefore we are actively seeking individual and corporate donors who are interested in helping more students with college expenses by making a gift to the MS Educational Scholarship Fund. With your help, we’ll support college bound students with even more grants in 2010. Sherri Ellis
JOIN THE MOVEMENT: www.MoveVA.org
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Moving Towards A World Free of MS!
Miles of Scarves (continued)
The cars start pulling up in front of the Polk house around 4 pm each Friday. The girls hop out with their knitting bags in hand, as they wave good-bye to their mothers. Marty has refreshments waiting as they gather in the family room to sit and knit. You can hear the clicking of the needles in between the voices and laughter of the girls as they talk about their past week and their plans for the weekend. Any girl that has collected more money shares the amount of the donation with the group and then takes a few minutes to color in the “thermometer” that they’ve created to show their progress. By the beginning of October, they are up to $500! Meredith, Lauren & Grace show the progress they are making in fundraising.
The Scarves Project has grown in scope since they first got together. The girls have set a goal of raising a minimum of $1500. They would like to be a Rest Stop Sponsor for the 2010 Bike MS ride…that is the amount of a sponsorship. John and Marty Polk, Meredith’s parents, ride in this event, so Meredith understands the importance of these rest stops to the 500 cyclists riding from Richmond to Williamsburg and back. In addition to raising the sponsorship money the girls hope to “man” the rest stop and decorate it with the scarves they’ve knitted. They also plan on selling the scarves at the finish line of the bike ride, with the proceeds also going to the MS Society. The Miles of Scarves for MS project is made up of Meredith Polk, Grace Moncure, Lauren Tull, Emily Harrison, Madison Bradley, Molly Bruce, Kate Carley and Niki Chin. Anyone interested in making a donation to this project can contact Judy Griffin at judy.griffin@nmss.org. If you want to write a check, make it out ot NMSS with Miles of Scarves in the memo area.
(from left to right) Niki Chin, Kate Carley, Molly Bruce, Madison Bradley, Emily Harrison, Meredith Polk, Lauren Tull, Grace Moncure
Send it to: 2112 W. Laburnum Ave. Suite 204 Richmond, VA 23227 JOIN THE MOVEMENT: www.MoveVA.org
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news
Meredith started asking her friends if they would be interested in joining her in this effort. Soon she had a group of 8 girls ranging from 9 to 12 years old who enjoy knitting and wanting to make a difference. They have given their project the name, Miles of Scarves for MS. The girls decided that for every dollar donated, they would knit one row of a scarf. They started by asking friends and neighbors to donate to their project and in just a few weeks had collected $200.
Fall Edition 2009
October: Disability History and Awareness Month There are varying estimates as to how many Virginians are living with a disability. The most recent estimate from the Virginia Board for People with Disabilities suggests that it may be over one million people, several thousand of whom have multiple sclerosis. There is a great need for support, recognition and awareness of people with disabilities and the issues they face. During the 2009 legislative session a resolution was passed by the General Assembly designating October as Disability History and Awareness Month in the Commonwealth. Senate Joint Resolution number 321 was introduced by Senator Toddy Puller* and passed unanimously by both chambers. By adopting this resolution, the General Assembly followed the precedence of the U.S. Department of Health and Human Services Center for Disease Control and Prevention which recognizes October as National Disability Awareness Month. October is also acknowledged as National Disability Employment Awareness Month by the U.S. Department of Labor. Senate Joint Resolution number 321 begins by citing the Americans with Disabilities Act (ADA) and its four founding principles: inclusion, full participation, economic self sufficiency and equality of opportunity for all people with disabilities. The ADA, which was passed by Congress in 1990, prohibits discrimination against individuals with disabilities in employment, the provision of services and benefits and by private businesses and public places. Since its passage, ADA has been a catalyst for progress in improving the standard of living for people with disabilities. However, despite the great progress that has been made there are still gaps in implementation and work to be done. Ashley Chapman, Statewide Advocacy Manager Celebrate Disability History and Awareness Month by contacting your legislators to thank them for Resolution 321, and to encourage them to act on their words and protect and uphold the rights of people with disabilities. Continue contacting your legislators throughout the year to discuss the need for accessible and affordable housing, accessible and affordable transportation and comprehensive healthcare. Legislators can and should stand in solidarity with the disability community year-round by promoting the implementation of ADA at all levels in the Commonwealth. Become an MS Activist and hold your government accountable for meeting the needs of people with disabilities by implementing sound policy that promotes independence, self sufficiency and increased opportunity. Email: AdvocacyVA@nmss.org for ways in which you can join the movement! *Senator Puller was recently honored by the National Capital Chapter for being an MS Champion in the General Assembly. She has consistently promoted policies that positively benefit Virginians with disabilities, including members of the MS community. Central Virginia Office Number: (804) 353-5008
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Advocacy
Advocacy
Moving Towards A World Free of MS!
Presented by Teva Neuroscience, Inc. No RSVP required. Just call 1-800-823-1880 to join call. Presenter: Jayne Ward, DO – Associate Professor of Neurology, Michigan State University Topic: Managing Spasticity Managing spasticity can help improve your coordination and energy level. We’ll discuss several treatment options that can help foster freedom of movement through reduced muscle tension and stiffness. November 17th November 18th
8pm 9pm
Presenter: Christopher Hughes, MD – Neurologist specializing in the treatment of MS and managing spasticity, Biddeford, Maine Topic: Year in Review How well was your MS managed this year? We’ll discuss how best to determine your therapy’s effectiveness and why it’s important to continue treatment. We’ll also share tips to help you get the most from your next physician visit. December 15th December 16th
8pm 9pm
Presenter: Elizabeth Crabtree, MD – Assistant Clinical Professor of Neurology, Director of Patient Program Development, University of California, San Francisco
LINKS Teleconferences are returning in 2010. Please join us for an 8 week series of hour long teleconferences. They will be on Thursdays from 7-8pm, beginning January 21, 2010. You can attend one call or all of them…whatever meets your needs and your schedule. January 21 – Nutrition, Exercise & Sleep January 28 – Financial Planning February 4 – Alternative Therapies February 11 – Cognitive Issues February 18 – Accessible Travel February 25 – Bowel & Bladder Issues March 4 – Communication Skills March 11 – MS Research Registration details will be available in January.
Lunch ‘n Learn at HealthSouth – Richmond When: Monday, November 23rd 11:30am to 12:30pm Where: HealthSouth 5700 Fitzhugh Ave. Richmond, VA Topic: Improving Your Cognitive Function Cost: Program and lunch are free Reserve your place now by call Judy at 804-591-3034 or send her an email at judy.griffin@nmss.org. DEADLINE is Thursday, November 19th.
New MS Clinic in Midlothian, VA The Multiple Sclerosis Clinic at the Neuroscience & Gamma Knife Center on the Johnston-Willis Campus of CJW Medial Center was created to provide advanced personalized care. The team of clinicians, led by neurologists and rehabilitative specialists will help coordinate all aspects of your MS care including: •Diagnosis and Treatment •Evaluations for physical and occupational therapy •Disease progression management To learn more or to schedule an appointment, please call (804) 267-6767
Location: 1401 Johnston-Willis Drive Midlothian, VA 23235 Dates: Monthly on Mondays Nov. 16th and Dec. 21st Please call for future dates Time: 8:00 a.m. – 12:00 p.m. ** Most insurance providers require a physician referral. You can bring this with you on the day of your appointment. JOIN THE MOVEMENT: www.MoveVA.org
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programs / services
FREE Teleconference Series
Fall Edition 2009
Below is a listing of Self-Help Groups sponsored by the National MS Society. Please contact the group leader in advance if you would like to attend as meeting times sometimes change. If you think you might like to start a group, contact the Central Virginia Chapter of the National MS Society at (804) 591-3039! or 1-800 FIGHT MS, ext. 3039. Chesterfield The Positive Thinkers 3rd Thursday at 11:30am River City Dinner (Shoppes at Bellgrade - Huguenot & Robious) Leaders: Claudia (804) 379-5493 Gail (804) 677-6445 Hanover County 4th Thursday from 7-8:30pm Commonwealth Wholesale, Inc. - 10085 Leadbetter Pl. Leaders: Dana (804) 550-2280 (work) (Care Partners Group meets 2-4 times/year in conjunction with this group) Petersburg Day Group Call for meeting times and locations HealthSouth Petersburg - 95 Pinehill Blvd Leader: Melanie (804) 526-9129 Petersburg Evening Group Call for meeting times Soutside Regional Hospital 4th Fl. Leader: Quennette (434)246-6007 Fredericksburg Fred-Spotsy MS Support Group 3rd Tuesday from 7-8:30pm Mary Washington Hospital Leader: Candace (540) 623-4095 (Program locations and times vary, please call leader if planning to attend!)
Richmond 2nd Monday from 10:15-11:30am Tuckahoe YMCA 9211 Patterson Ave., Richmond Leader: Arnie (804) 393-2614 Richmond Evening Group 2nd Thursday from 7-8:30pm HealthSouth Rehab Hospital 5700 Fitzhugh Ave., Richmond Open to Anyone with MS Leader: Lorenzo (804) 318-0360 Richmond (Virginia Home) For people with advanced stages of MS Every Monday at 11am 1101 Hampton St. For people with advanced stages of MS Leader: Judy (804) 359-4093 South Hill Empowerment Group 3rd Wednesday from 6-8pm Community Memorial Health Center 125 Buena Vista Circle Leader: Starr (434) 848-2847 Surry County 2nd Thursday at 7pm Hope Christian Alternative 325 Banks St., Surry, VA 23883 Leader: Stephanie (757) 267-2329
Tappahannock Neuromuscular Support 2nd Monday from 10-12pm Essex Library, 117 Church Ln. Leader: Pat (804) 443-9657
Central Virginia Office Number: (804) 353-5008
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programs / services
Self-Help Groups
Moving Towards A World Free of MS!
We wanted to take this opportunity to announce several new self-help groups serving as a resource to those living with MS and those who are caregivers to loved ones with MS.
Richmond
Surry County
Lorenzo Hobbs is the leader of a group serving those experiencing either invisible symptoms, such as fatigue, cognitive issues, depression, and/or those who have been diagnosed within the last few years. He is excited to get this group up and running and is looking to bring in speakers as well as make time for social activities for group members. The details are:
Stephanie Robinson has lived with MS for 19 years. She began experiencing symptoms when she was just 15 years old. She enjoys bringing optimism to difficult situations. She is looking forward to her starting her group and offering mutual support and education to others in her area living with MS as well as friends and caregivers.
Place: HealthSouth Richmond - classroom When: 2nd Thursday of the month, 7:00 – 8:30 pm Contact: Lorenzo @ 804-318-0360
Place: Hope Christian Alternative, 325 Bank Street Surry, VA 23883 When: 2nd Thursday of each month at 7:00 p.m. Contact: Stephanie @ 757-267-2329
Fredericksburg – Spotsylvania Dr. Candace Allshouse has hit the ground running with her new group. They offer educational programs as well as social opportunities. She also teaches a MS Aquatics class at a local YMCA. Please contact her for more information. Place: Mary Washington Hospital. Classrooms A&B When: 3rd Tuesdays, 7:00 – 8:30 p.m. Contact: Candace @ 540-623-4095
2009 Annual Meeting Monday, November 16th Please join us to learn about all the things our Chapter has accomplished in 2009. We will be recognizing all our volunteers, including Walk MS and Bike MS Team Captains, SelfHelp Group Leaders, our Board and Committee Members and everyone else who gave their time and talent to help us better serve people living with MS. We will also be electing our Board of Directors for 2010 and honoring our 2009 Legislative Champion.
Location: The Westin Hotel Richmond, VA Time: 7 to 8pm Celebrate the accomplishments of our Chapter and hear how volunteers are making a difference in the lives of people living with MS. RSVP to grace.phillips@nmss.org or 804-591-3040 This event is FREE. RSVP by November 11th JOIN THE MOVEMENT: www.MoveVA.org
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programs / services
New Self-Help Groups
Fall Edition 2009
November is Caregivers Month Well Spouse Foundation - - for spousal caregivers, online mentorship, bulletin boards http://www.wellspouse.org/
The Central Virginia Chapter wants to honor caregivers for people living with MS by providing them with a special day…just for them. These daylong events are free to attend. To register contact Lisa at 804-591-3041 or lisa.simpich@nmss.org. Financial assistance will also be provided for respite care so that the caregivers may attend unaccompanied. Contact Donna Clements at 804-591-3039 or donna.clement@nmss.org if you need care for a loved one.
www.lotsahelpinghands.com – resource that allows a community of family, coworkers, neighbors, etc. to be added to the email list for the person with MS, where it lists in detail the types of care needed for this person (i.e. dinner delivery once a week, ride to the doctor, etc.) the list of people are emailed to inform them of what needs the person has, and they can choose to sign up to help out with something
In Richmond CARING FOR THE CAREGIVER PROGRAM Saturday, November 21, 2009 9:30 a.m. – 4:00 p.m. Sheraton Richmond Park South Hotel 9901 Midlothian Trpk Richmond, VA 23235 Registration Deadline Nov. 18th In Fredericksburg CAREGIVERS SYMPOSIUM Saturday, November 14, 2009 8:00 a.m. – 3:30 p.m. Location: Fairview at River Club 10835 Tidewater Trail Fredericksburg, VA 22408 Registration Deadline Nov. 4th Caregiver Resources This list is full of helpful resources for people who are caregivers providing emotional and physical support to a loved one with MS. The NMSS knows that the role of a caregiver often goes unrecognized. During the month of November which is National Family Caregivers Month, the Society would like to highlight resources that may be beneficial to caregivers. The Central VA Chapter may also be able to provide support through several programs such as financial assistance, care management and self-help groups.
www.msworld.org - check out the message board specifically for caregivers
www.caregiver.org - online support groups, chat rooms www.nfcacares.org - National Family Caregivers Association Educational and support services, mentorship, peer support. www.caringroad.com - Caring Road is an interactive site offering support and information for caregivers, including chat rooms, links and a disease directory. www.Caregiving.org - The National Alliance for Caregiving - Provides information from pertinent studies, tips for caregivers and a searchable resources directory. www.care-givers.com - National Organization For Empowering Caregivers, A comprehensive site offering information, emotional and spiritual support through featured expert columns, articles on caregiving, journal exercises, a newsletter, forums, chats, healing circle, caregiver and caregiving spotlights, inspiration, humor and more. www.benefitscheckup.org - Operated by the National Council on the Aging, this Web-based service identifies federal and state assistance programs for older Americans in each community. You must fill out a short questionnaire which is used only to determine which programs an older person qualifies for
Central Virginia Office Number: (804) 353-5008
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News
November is National Family Caregivers Month
Moving Towards A World Free of MS!
Walk MS 2010 events
Richmond Fredericksburg Tappahannock JOIN THE MOVEMENT: www.MoveVA.org
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Fall Edition 2009
Bike MS 2010 events
Richmond to Williamsburg ... and back! 150 Miles 25th Anniversary 2 Days
1 Cure
Central Virginia Office Number: (804) 353-5008
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Moving Towards A World Free of MS!
research
Research MS Research in Our Own “Backyard” There has never been a more amazing time in MS research than now. Progress is being made at a remarkable rate, and the National MS Society’s 62-year-involvement has driven much of this progress, including the six approved disease-modifying drugs and new therapeutic approaches making their way through the development process. And even in these challenging economic times, we’re continuing to propel research forward. This year alone, we’re providing over $33.5 million to support 345 new and ongoing projects in our core research portfolio, plus $1.5 million for Fast Forward, our drug development subsidiary which continues to attract its own new funding streams. In addition, thanks to the efforts of our MS activists, an additional $5 million has been specifically set aside for funding MS research out of the 2009 Department of Defense budget. Some of this groundbreaking research is taking place right here in Richmond at the Virginia Commonwealth University School of Medicine. This Research Group is highly collaborative and multi-departmental. They are trying to unravel the pathologic mechanisms responsible for the motor, sensory and cognitive deficits observed in MS patients. Their efforts are focused on maximizing nervous system repair. In addition to the Primary Investigators Carmen Sato-Bigbee, Babette Fuss and Jeff Dupree the group involves graduate students and postdoctoral fellows, thus contributing to the training of the ScottHenderson shows one of the special microscopes used future generation of MS researchers. They are also very for research. fortunate to have access to the best equipped microscopy facility in the state of Virginia, headed up by Scott Henderson. Here are the research projects they are working on:
Carmen Sato-Bigbee, Associate Professor, Dept. of Biochemistry & Molecular Biology and her team are studying oligodendrocytes. The identification and understanding of these signaling mechanisms and their target genes should provide important clues for the design of therapeutic strategies to stimulate myelin regeneration in MS. Carmen Sato-Bigbee (right)and team member
JOIN THE MOVEMENT: www.MoveVA.org
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Fall Edition 2009
Research
Research (continued) Babette Fuss, Associate Professor, Dept. of Anatomy & Neurobiology and her team are gaining a better understanding the later stages of oligodendrocyte maturation. By identifying the molecular players involved in regulating these critical final steps of this maturation during normal development, the studies are anticipated to reveal novel therapeutic targets designed to stimulate remyelination under pathological conditions as they exist in MS. Jeff Dupree, Associate Professor, Dept. of Anatomy & Neurobiology and his team are trying to identify the molecules and mechanisms that establish and maintain the interactions between the myelin sheath and the nerve Babette Fuss (right) and team member cell. A better understanding of these mechanisms should lay the foundation for the identification of novel therapeutic targets for preserving and restoring nervous system function in MS patients. It should be noted these research projects were funded by the National MS Society with money raised at chapter events (like Walk and Bike). Funding may be required for 3-5 years, depending on the project. Drs. Dupree and Sato-Bigee’s project funding end in 2009. Due to economic circumstances, the National MS Society has reduced the number of projects it is currently funding. Both researchers have applied for grants through the National Institute of Health and will most likely receive the funding. Some of the ramifications of this change in the funding source are that the research cannot solely focus on MS, but must address other, similar research investigations. It also means that if the Jeff Dupree (middle) and team members grant money is reduced, the teams may lose some of their graduate students, as there will be no funds for salaries. This affects the continuity of the research. This is why fundraising is SO IMPORTANT to the National MS Society. We would like the research to stay focused on projects that will help people with MS. For more information on how you can help with funding research projects like these, contact Sherri Ellis at 804-591-3030 or sherri.ellis@nmss.org.
Central Virginia Office Number: (804) 353-5008
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Fall Edition 2009
Fall Events Events
The WOMS Theme Walk a Mile in My Shoes
Left to Right: Robert C. Sledd, Peter J. Bernard, Mark B. Hubbard
On October 14th, 240 people gathered at the Jefferson Hotel to pay tribute to the employees of Bon Secours – Health Systems and their leader, Peter J. Bernard. Peter is the Senior Vice President of Bon Secours – Health Systems and the CEO of Bon Secours Virginia. Peter was introduced by Sr. Patricia Eck of the Sisters of Bon Secours. He accepted the HOPE Award on behalf of all the hard working staff of their Health Systems. Robert Sledd, Dinner Chair emceed the gala. This annual dinner raised $265,000 for research, programs and services for people living in central Virginia with MS.
We hosted our Women on the Move Luncheon on September 24th at the Jefferson Hotel. 144 people joined us for a silent auction, a fashion show put on by Saxon Shoes and an inspiring speaker. MS Ambassador, Wendy Booker, shared the challenges she has faced in living with MS and obstacles that she has overcome. The event raised over $20,000.
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Central Virginia Office Number: (804) 353-5008
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2112 W. Laburnum Ave. Richmond, VA 23227
Suite 204
National MS Society Mission: We mobilize people and resources to drive research for a cure and to address the challenges of everyone affected by MS!