CONNECTION
G TEAM GAINS MOMENTUM W I N T ER 2 0 12
Eddie Gutierrez, Trumbull Diagnosed with MS in 2006.
NON-PROFIT ORGANIZATION U.S. POSTAGE PAID Hartford, CT Permit # 01870
Cynthia was diagnosed on December 31, 1989. She has been living at Bride Brook Health and Rehabilitation Center in Niantic for 16 years.
NATIONAL MULTIPLE SCLEROSIS SOCIETY CONNECTICUT CHAPTER
MIKE MARQUES PHOTOGRAPHY
Tel: 860.913.2550 1.800.FIGHT MS (344.4867) Fax: 860.761.2466
CONNECTION
www.ctfightsMS.org www.nationalmssociety.org
John W. “Jack” Betkoski, III Chairperson, Board of Trustees Lisa Gerrol President and Chief Professional Officer 860.913.2550, ext. 52531 ANNUAL CAMPAIGN Kara Preston Associate Vice President 860.913.2550, ext. 52533 COMMUNICATIONS Karen E. Butler Vice President 860.913.2550, ext. 52530 DEVELOPMENT Nicole Tobin Marohn Vice President 860.913.2550, ext. 52544 FINANCE & ADMINISTRATION Loretta Sfiridis Associate Vice President 860.913.2550, ext. 52525 PROGRAMS & SERVICES Lynette J. Coleman Associate Vice President 860.913.2550, ext. 52538 MANAGING EDITOR Karen E. Butler EDITOR IN CHIEF John Owens
HONOR EACH OF THE 6,000 AFFECTED BY MS
To commemorate the 65th anniversary of the National MS Society, the Connecticut Chapter is hosting a special fundraising and awareness campaign throughout 2012. Our goal is simple: to raise $65 in honor of each of our 6,000 Connecticut residents living with MS. We are offering you a challenge. Give in multiples of 65: $65, $130, $195, $260, $325, $650, $1,300 and so on. Each multiple of $65 represents someone in our state battling the unpredictable effects of MS. Those donating $2,600 or more will receive lasting recognition on a commemorative plaque. The resulting funds will specifically support chapter programs, assisting our most vulnerable and at risk populations. They need us. We need you. To contribute to the 65th anniversary campaign, please visit ctfightsMS.org or send your donation to National MS Society, Connecticut Chapter, 659 Tower Ave., First Floor, Hartford, CT 06112.
GRAPHIC DESIGN Sal DiNino SPECIAL THANKS
CALL TO ACTION Studies show that early and ongoing treatment with an FDA-approved therapy can reduce future disease activity and improve quality of life for many people with multiple sclerosis (MS). The National MS Society’s medical advisors recommend that people with MS talk with their health care professional about using one of these medications and about strategies and effective treatments to manage symptoms. The National MS Society is committed to ensuring that people with MS have the information and quality care that they need to live healthy, productive and independent lives. If you or someone you know has MS, please contact the National MS Society today at nationalMSsociety.org or 1.800.FIGHT MS to learn about ways to help manage multiple sclerosis and about current research that may one day reveal a cure.
Enough is Enough…
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nough is enough. Or is it? We’ve all said it before, “enough already!” People living with MS have spoken loud and clear. They want a cure, and they want it NOW! Through focus groups and nationwide surveys, the National MS Society has heard the collective cry for more MS research. As a result, the society has escalated the war on MS, developing a mindset that when it comes to a world free of MS, enough IS enough. Last year the society, through the support of its 47 chapters pledged to raise $250 million over five years to fuel ground-breaking MS research. Never in its history has the society committed as much funding to science as it has now. In fact, this bold fundraising initiative is referred to as MS Now, an MS research revolution. Like the society, the Connecticut Chapter is committed to supporting the wishes of its members, signing on to support this MS research revolution. We believe anything less is not enough. Our research commitment involves John W. “Jack” Betkoski III a comprehensive strategy focused on three distinct areas: to stop MS, restore function and end MS forever. We are determined to stop disease activity and prevent further progression for those already battling MS. We must restore all function lost to nerve damage. Finally, we are working to eliminate MS from the world, period. To accomplish this monumental mission, chapters across the nation have been asked by the society, on behalf of those it serves, to devote greater funds to MS research. The reallocation of additional research funds will impact our capacity and sustainability for some programs and services, such as yoga, aquatics, our annual awards ceremony and the reduction of financial assistance. However, the Connecticut Chapter will continue to maintain other important programs and a strong referral system, helping members locate resources in their communities. In addition, the chapter is investigating other means, such as grant funding, with the hopes of reinstating some of the suspended programs and services. The Hayley’s Hope and Michaela’s Miracle MS Memorial Fund will continue to fund family programs, such as the MS scholarship program, MS Family Weekend, caregivers programs and MS Community Day. You’ve said it. We listened. We must stop MS. In the meantime, let’s work together to devise new ideas for facilitating community-based programs, assisting people with MS. If you have an idea for establishing a program in your community, contact us and we will help in any way possible. Together, we will win the war on MS – NOW!
Jack
– John W. “Jack” Betkoski III Chairperson, Board of Trustees
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G TEAM Walks For a Miracle by John Owens, Communications Specialist
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PHOTO: KAREN E. BUTLER
ddie Gutierrez and his wife, Cynthia Lucero, have had some good days over the years – like the day they were introduced to one another at a birthday party in 1990, or the day their son, Roberto, was born in November of 2005. But the couple has endured struggles too, such as in 2005, when Eddie began experiencing baffling symptoms, leading to the day in 2006 when he was diagnosed with multiple sclerosis.
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I went through every form of grief…
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– Eddie Gutierrez More than 6,000 Connecticut residents, like Eddie, live with multiple sclerosis, a potentially debilitating disease affecting the central nervous system. The cause is unknown and, as a 6
result, there currently is no cure. Symptoms can include, among other things, numbness in the limbs, difficulties with vision and speech, stiffness, loss of mobility and, in some more severe cases, total paralysis. The progress, severity and specific symptoms of MS in any one person cannot be predicted. Eddie’s feelings of helplessness were countered by action. Not long after his diagnosis, Eddie and Cynthia formed the G TEAM: Good People Doing Good Things, and stepped out for their first Walk MS in 2008. “We didn’t want to just sit around and do nothing,” said Cynthia, who at her job as art director for Business Journals in Norwalk also has two co-workers who live with MS. “If this is something that’s in our lives – then maybe we should give in order to receive back. We are fortunate enough to have a lot of people who were willing to stand behind us.” In their first year, 18 walkers stepped out with the G TEAM, which has experienced steady growth since. Last year marked the G TEAM’s fifth year of participation in Walk MS. The 48-member team stepped out at West Haven High School and far exceeded their $5,000 fundraising goal, raising $6,777. In their five years, the G TEAM has raised nearly $18,000.
PHOTO: KAREN E. BUTLER
PHOTO: RICHARD ESPOSITO
“I went through every form of grief,” recalled Eddie, who hasn’t felt his abdomen since 2005 – a symptom commonly referred to as the MS hug. “I was angry, I was sad. The biggest challenge was that I didn’t want to live my life as a burden to others. I felt like my role in the family was to be the provider, and at the time, MS made me feel like I wasn’t going to be able to fulfill that role.”
According to Eddie, the response has been humbling. “So many people that I know have raised their hands and said they want to be involved,” he said. “It’s something for which I’m very grateful. This journey is called the movement, and it’s funny, but it seems like it really does gain traction.” Each year at the annual Walk MS event, the G TEAM makes its mark against MS with their team flag and bright orange shirts and accessories. For the G TEAM, Walk MS is a party. “You can make the walk whatever you want it to be but we have a big party when we’re there,” said Cynthia, who continues to co-captain the team with her husband. “We have our flag, hats, sunglasses and beads. It’s not something to be solemn about, as long as you can do a short walk; you can do it.”
The team’s positive energy is contagious. “Last year people we didn’t even know joined the team,” said Cynthia. “We had people saying, ‘hey, we saw your team page on the society’s website, we want to be part of your team.’ It’s been really great to see our team grow.” In addition to participating in the walk, the G TEAM hosts an annual wrap-around fundraising event called Zumba for MS
to kick-off their fundraising. Last year’s event raised $2,600 for the G TEAM. The turnout was so big, Cynthia is searching for a new location for this year’s event. “I’m hoping to lock down a bigger gym soon,” said Cynthia. “We have all of our instructors back, so we’re expecting this year’s Zumba for MS to be even bigger and better.” For Eddie, Walk MS is a chance to support others who experience severe disability from their MS. “I feel blessed that I’m still able to do the walk,” said Eddie. “I’m not just taking those steps for myself; I’m taking them for those who can’t.” The 2013 Walk MS, presented by Travelers, will step out from 12 sites statewide on Sunday, April 21. The G TEAM: Good People Doing Good Things, will once again step out at West Haven High School. To learn more about multiple sclerosis or to JOIN THE MOVEMENT and register for Walk MS, please visit www.ctfightsMS.org.
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Practice To Open MS Care Center
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ccording to the National MS Society, connections are essential to better treatments and a cure. With that in mind, the society has partnered with a Connecticut neurology practice to launch the first National MS Societycertified MS comprehensive care center in the state. “Our certification with the National MS Society allows us to deepen our relationship with patients in Connecticut living with MS,” said Jeffrey L. Gross, M.D., president and managing partner of Associated Neurologists of Southern Connecticut and director of the practice’s MS Comprehensive Care Center. “We look forward to providing Connecticut Chapter programs and services more directly to our patients while at the same time participating in the effort to develop additional innovative treatments for MS. As the first certified MS center in Connecticut, we will strive to provide an even higher level of care to MS patients living in Connecticut and beyond.” To address the complex needs of patients battling MS, in 2008 the society first introduced the National MS Society Affiliated Center for Comprehensive MS Care. Since then more than 80 centers, located across the U.S., have been approved. The National MS Society believes that people with MS receive optimal care and support when strong collaborative relationships exist between healthcare professionals and the society. The initiative is referred to as Partners in MS Care, and includes collaborations between the society and neurologists, mental health professionals, rehabilitation professionals and centers for comprehensive MS care. “We partner with healthcare providers who desire a strong working relationship with the society,” said Lynette Coleman, associate vice president of programs and services at the National MS Society, Connecticut Chapter. “We look for healthcare providers recognizing the value of working with other disciplines to address the complex needs of patients along the continuum of care. In return, the society provides Partners in MS Care participants with up-to-date information and facts about MS management and practices.” As a society-certified center, Fairfield’s new MS Comprehensive Care Center has a direct line of communication with experts at the National MS Society. This collaborative connection ensures quality care and support for people affected by multiple sclerosis. The new MS Comprehensive Care Center offers specialized healthcare and services. Comprehensive care centers have been documented to improve continuity and coordination of care, patient satisfaction and management of patient outcomes. Centers specializing in MS care provide timely intervention and treatment. The Fairfield center also offers patients with the opportunity to participate in groundbreaking clinical trials. “We currently are conducting six MS studies, some in Phase 1 and others, as far along as Phase 3 – the final study before a drug goes to market,” said Angelo Termine, clinical research 8
Jeffrey L. Gross, M.D., president of Associated Neurologists and director of the practice’s MS Comprehensive Care Center, and Nancy Sloane, R.N. Nancy’s title to come
manager. “These are exciting times; MS research is moving forward more quickly than ever before. We are thrilled to be on the front lines. As a result, our patients have the opportunity to take part in potentially life-changing scientific breakthroughs.” Clinical trials, or clinical research studies, test new medical approaches in people to make sure these approaches are safe and effective. Currently, the MS Comprehensive Care Center is hosting the final phase of testing for a generic form of a wellknown drug used to reduce episodes of symptoms in patients diagnosed with relapsing-remitting MS. This new generic drug, if proven effective, has the potential to reduce costs for people already financially strapped because of the mounting expenses in treating their chronic illness. The center is host to seven neurologists, three physician assistants, two registered nurses, three neuropsychologists and a
licensed professional counselor, each of whom play an essential role in the care of people living with multiple sclerosis. The MS Comprehensive Care Center also offers a health and wellness program, providing services such as biofeedback, hypnosis, yoga, acupuncture and massage therapy. Patients undergoing relapse are able to receive IV infusions immediately onsite, rather than having to go to a hospital for care. Associated Neurologists of Southern Connecticut, which has offices in Fairfield and Milford, is recognized as being the largest practice in the state using neurotoxins, such as Botox®, to treat the varying adverse effects of multiple sclerosis, including issues related to spasticity and bladder incontinence. “We are delighted to partner with Associated Neurologists of Southern Connecticut and its center,” said Coleman. “We look forward to a dynamic collaboration with a single focus in
mind: helping to keep the lives of people living with MS moving forward.” Associated Neurologists of Southern Connecticut hosted a ribbon cutting and open house Thursday, Oct. 18, at the new MS Comprehensive Care Center at 75 Kings Highway in Fairfield. For more information on current clinical trials, visit Associated Neurologists of Southern Connecticut’s website at www.anscneuro.com. For more information on multiple sclerosis, its effects and the many ways the National MS Society, Connecticut Chapter, assists people with MS, visit www.ctfightsMS.org.
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RESEARCH Yale Study Among 52 New MS Research Projects
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he National MS Society has launched 52 new MS research and training awards, with multiyear commitments totaling up to $18.4 million. These awards are part of a comprehensive research strategy aimed at stopping MS, restoring function and ending MS forever. One of these awards is funding a new study by Jeffery Kocsis, Ph.D., at Yale University in New Haven. Just a few short years ago, there was little belief that nervous system repair was even possible. Now, through the efforts of the National MS Society and others, there is not just belief, but a whole new field that has emerged to pursue strategies to repair the nervous system and restore lost function in people with MS. At Yale, Kocsis is heading a study titled “Transportation of OPCs into the demyelinated spinal cord.” The study evaluates the transplantation of myelin-producing cells to repair damaged myelin in an animal model to look for clues to the possible safety and benefit in people with MS. Demyelination, or the destruction of myelin, the material that surrounds and protects nerve fibers in the brain and spinal cord, leads to
the disruption of nerve signals in MS. Furthermore, oligodendrocytes, the cells that manufacture and maintain myelin, are also destroyed, leaving the body with no ability to repair the lost sheathing. The brain possesses potential replacement cells, called oligodendrocyte precursor cells (OPCs), which to some degree can repair damaged myelin, but they generally can’t keep up with the progression of MS. Kocsis is assessing the ability of OPCs, derived from stem cells, to repair myelin damage when implanted into spinal cords of animal models. The OPCs Kocsis is using have been approved by the FDA for clinical trials in human spinal cord damage. He will evaluate the amount of myelin repair with both microscopic studies of the spinal cord and with clinical studies to see whether myelin repair restores functional ability. Kocsis and his colleagues will also evaluate the safety of the implants. For more information on ongoing MS research projects, please visit online at www.nationalMSsociety.org.
Myelin Repair Study Begins Overseas
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ith funding from the National MS Society, a study is underway to stimulate the formation of new myelin in people with multiple sclerosis. Fast Forward, LLC, a not-for-profit subsidiary of the National MS Society, is funding research at the Universities of Cambridge and Edinburgh, U.K., to screen for compounds that can stimulate myelin repair in people with MS. Myelin is the substance that surrounds nerve fibers and is a target of the immune attack on the brain and spinal cord in MS. The project, which will be directed by Robin Franklin, Ph.D., D.V.M., grew out of findings from a nervous system repair and protection initiative funded through the society’s Promise: 2010 campaign. The molecule RXR-gamma plays a role in the formation of new myelin. Franklin and Charles ffrench-Constant, Ph.D., of the University of Edinburgh, found that this molecule is “turned on” following myelin damage. In this new study, Franklin hopes to find molecules that 10
can stimulate RXR-gamma to help form new myelin faster. Franklin, colleagues and drug discovery company, Domainex, are using a virtual screening method that will allow them to identify a library of about 1,000 molecules that can promote RXR activity. “We are thrilled to collaborate with the world class team of scientists led by Dr. Franklin,” said Timothy Coetzee, Ph.D., Chief Research Officer at the National MS Society. “Driving research to restore function in people with MS is a critical component of the society’s research strategy.” Fast Forward, founded by the National MS Society, focuses on expediting the drug development process, bridging the gap between promising discoveries and the commercial expertise and funding to move them forward. For more information on this study, please visit online at www. nationalMSsociety.org.
The Battle Is Mine . . . Judy Noble, Cromwell Diagnosed with MS in 1998.
PHOTO: MIKE SHAUCK
. . . But My Army Is Strong. Team Noble and Lindsay’s Loafers
2012 Travelers Walk MS
Judy and her 17-year-old daughter, Lindsay, both have multiple sclerosis. Lindsay was diagnosed at just 14 years old, eight years after her mother’s diagnosis. The battle may be theirs, but they have an army of fierce supporters leading the charge to ensure better treatments and a cure. These loyal comrades, which include family, friends, classmates and colleagues, make up the women’s Walk MS teams. Together, they are a formidable force in the fight against MS.
presented by North American Power
Do you have MS? Then commit to forming a Walk MS team, your very own army of supporters, and step out or wheel out Sunday, April 21, from one of 12 walk sites situated across the state. Do you know someone with MS? Then demonstrate your commitment to help. Join a Walk MS team and raise funds. Your participation shows others that enough is enough and you’re putting your foot down and declaring war on MS. Get connected, every step matters. Learn more at www.ctfightsMS.org.
2012 It’s a wrap!
JOIN THE MOVEMENT
because it’s easy to take for granted.
In 2012, thousands of walkers across the state JOINED THE MOVEMENT at a record 12 walk sites and raised nearly $1.38 million. News 8 evening anchor Darren Kramer served as grand marshal. The Connecticut Chapter would like to thank title sponsor Travelers and presenting sponsor North American Power. Other sponsors included platinum sponsors EMD Serono and Biogen Idec; diamond sponsors Assa Abloy and Saint Francis Hospital and Medical Center; gold sponsors Acorda Therapeutics, BlumShapiro, Enterprise Rent-A-Car, Mount Sinai Rehabilitation Hospital, Naugatuck Savings Bank Foundation, Questcor Pharmaceuticals, Teva Neuroscience, and USA Hauling & Recycling, Inc.; silver sponsors Alliance Energy LLC, Center for Orthopaedics, PC, Lydall, Inc., and The Okonite Company; and bronze sponsors ALDI, Inc., Darter Specialties, J.H. Cohn LLC, Richard Chevrolet, Inc. and Ride-Away Handicap Equipment Corp.
Walk Site Top Teams CHESHIRE Sully’s Shamrocks - $23,670 CLINTON Team Pierpont - $4,405 DANBURY We’re With Her - $3,325 ENFIELD Hoopster’s Boosters - $7,460 LITCHFIELD The Marching McGraths - $17,448 NEW LONDON JW Walk Team - $3,988 MANCHESTER Joanie’s Ponies - $16,090 SIMSBURY The MS Kateers - $8,911 STAMFORD Ernst & Young - $14,456 WEST HARTFORD Travelers - $70,071 WEST HAVEN Team Hawes - $8,695 WESTPORT Team Burger - $35,910
Top 10 Fundraisers – Statewide 1. 2. 3. 4. 5. 6. 7. 8. 9. 10.
Robert Flowers $41,224 Alec Burger $37,725 Joy Pozefsky $31,110 Kacey Sullivan $19,800 Chris Getman $17,988 Don Walsh $15,490 Joan Sidney $15,160 Stephen Borsy $13,831 Dan Doty $13,648 Nicole Nienstadt $8,860
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Bike MS: Cardio Express Ride More than 100 cyclists pedaled up to 75 miles to raise over $100,000 for the Bike MS: Cardio Express Ride, held Sunday, Sept. 9. For the first time, the ride started and finished at the Riverfront Boathouse in Riverside Park in Hartford. The Connecticut Chapter would like to thank title sponsor Cardio Express Fitness Centers, gold sponsor Novartis Pharmaceuticals, and bronze sponsors Acorda Therapeutics and the Law Offices of Sharon L. Pope, LLC. For more information on the 2012 ride, please visit ctfightsMS.org. *Award winners and top fundraisers were not available at press time.
PHOTO: MARK JOHNSON
Bike MS: Red Thread+Steelcase Ride, presented by Louis Dreyfus Commodities
Top Teams
More than 1,000 cyclists shifted gears to pedal up to 100 miles and raised nearly $500,000 during the 2012 Bike MS: Red Thread+Steelcase Ride, presented by Louis Dreyfus Commodities. The event took place Sunday, June 3 in Windsor and Westport. The Connecticut Chapter thanks title sponsor Red Thread and presenting sponsor Louis Dreyfus Commodities. Other sponsors included diamond sponsor Bunge Global Markets; gold sponsors EMD Serono and Teva Neuroscience; silver sponsors Mitchell SAAB, Saint Francis Foundation and Wilton Outdoor Sports and bronze sponsor Noble Americas Corp.
Top 10 Fundraisers
WESTPORT Louis Dreyfus Commodities - $56,955 WINDSOR Maag Wheels - $68,116
1. 2. 3. 4. 5. 6. 7. 8. 9. 10.
Larry Greenhall $48,075 Evan Flaschen $47,330 John Formica $34,560 Ray Martin $18,750 Peter Porrino $10,050 Patrick Smith $7,100 Cornelius Grealy $5,850 Jeffrey Faul $5,500 Mark Homan $5,325 Lew Schwartz $5,315
Run MS Sponsors
NBC Connecticut MS Motorcycle Ride
The Connecticut Chapter hosted its first ever Run MS on Saturday, May 5, at Rentschler Field in East Hartford. The event attracted more than 300 runners and raised more than $16,000. The Connecticut Chapter thanks Run MS Sponsors EMD Serono and Teva Neuroscience.
On Sunday, July 22, hundreds of bikers saddled up for the 2012 NBC Connecticut MS Motorcycle Ride at the Oakdale Theatre in Wallingford. For the first time, the ride featured two satellite start locations; one at Gengras Harley-Davidson in East Hartford and one at the Connecticut Chapter office in Norwalk. The main start location was at the Oakdale Theatre in Wallingford. All three rides ended at the Oakdale Theatre. The Connecticut Chapter thanks title sponsor NBC Connecticut, additional sponsors Haymond Law, Wells Fargo and Hot Leathers and community partners Clear Channel Radio Connecticut and Connecticut Cruise News.
For more information on the 2013 run, please visit ctfightsMS.org
A special thanks to Todd Piro, 2012 grand marshal. 14
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do it yourself
• PHOTO: East Haven resident Bob Lukaszek poses with his sister, Helen Langello. Lukaszek established the Helen’s Heroes MS Golf Classic in honor of Langello, who was diagnosed with multiple sclerosis in 2003. The sixth annual Helen’s Heroes MS Golf Classic raised $9,100 for the Connecticut Chapter. The tournament was held Friday, June 22, at the Grassy Hill Country Club in Orange. Lukaszek was recognized with the Outstanding Third Party Event Award in 2009.
Left to right: Trumbull resident and committee co-chairperson Terrance Walsh, Boston Red Sox manager Bobby Valentine, and Brandon Steiner, founder and chairman of Steiner Sports Marketing, at the 2011 MS Dinner of Champions.
2012 MS Dinner of Champions Marks Volunteer’s 20th Year of Involvement
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n 1988, Terrance Walsh helped produce the opening video for the annual MS Dinner of Champions event. More than 20 years later, his signature mustache and bowtie have become a fixture. After that first event in 1988, Walsh served on the MS Dinner of Champions committee until 1998 and again from 2004 to the present. In 2006, he became the event’s committee chairperson and has continued in that role ever since. Through its history, the event has raised a total of more than $7 million. The 2012 MS Dinner of Champions, which will be held Thursday, Nov. 8, at the Hyatt Regency in Old Greenwich, will mark Walsh’s 20th year of involvement with the event. The people living with MS that Walsh has met during his more than two decades of involvement continue to inspire and motivate him. “You start to understand how events like this can change a person’s life,” said Walsh, who lives in Trumbull with his wife, Sharyn, and their three children. “There are so many people across the state who benefit greatly from all types of client services and it’s very rewarding to know that you’re helping out that cause.”
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In addition to his work with the MS Dinner of Champions, Walsh has served on the National MS Society’s Promise 2010 committee and is a consistent supporter of the chapter’s annual Golf MS Classic. He has twice served on the chapter’s board of trustees, from 1992 to 1998 and from 2004 to present. For his outstanding service, Walsh was recognized with the 2010 Gino Partenza Achievement Award at the Connecticut Chapter’s annual meeting and awards ceremony. The MS Dinner of Champions was established in 1978 by founding board members Jon Rudiger and Marc Lyons. The event honors outstanding corporate leaders and local and national sports figures making a significant contribution to the community at large. The evening includes a cocktail reception, dinner, awards ceremony, live auction and silent auction. Past honorees include Steve Young, Joe Namath, Frank Gifford and Billie Jean King. This year’s event will recognize New York Yankees first baseman Mark Teixeira with the J. Walter Kennedy Memorial Award. Shep and Ian Murray of Vineyard Vines will receive the MS Hope Award. Boston Red Sox manager Bobby Valentine will serve as master of ceremonies. For ticket information or to become a sponsor of the 2012 MS Dinner of Champions, please contact Meg Staubley at 860.913.2550, ext. 52524, or email meganne.staubley@nmss.org. For more information on multiple sclerosis, visit www.ctfightsMS.org.
• The third annual Eleven Group Charity Golf Tournament was held Sunday, Aug. 11, at the Lyman Orchards Golf Club in Middlefield and raised $9,100. Eleven friends host the tournament each year to honor the memory of a member’s father; Ross Helm, of Cromwell. • More than 100 guests attended the second annual Sangria Throwdown on Saturday, June 16, at the Keeney Memorial Cultural Center in Old Wethersfield. Newington resident Karen Guarnaccia, who was diagnosed with multiple sclerosis in 1994, hosted the event, which raised $5,182. Guests included celebrity judges Teresa LaBarbera, News 8 traffic reporter, and NBC Connecticut weekend meteorologist Darren Sweeney.
MS FAMILY DAY WITH THE BRIDGEPORT SOUND TIGERS SUNDAY, FEBRUARY 10, 2013 WEBSTER BANK ARENA BRIDGEPORT, CONNECTICUT For ticket information, call Eric Szafran at 800.344.4867 or email at eric.szafran@nmss.org Funding for this program was generously provided by: Hayley's Hope & Michaela's Miracle MS Memorial Fund Continuing the Work of the Petit Family
• The 27th annual Glastonbury Lacrosse Tournament was held at Glastonbury High School on Saturday, July 21, and Sunday, July 22. The tournament, held in memory of David Cooper, who passed away due to complications from MS, raised $4,000 for the Connecticut Chapter. • Danbury resident Jeff Goresen hosted the sixth annual MS Benefit Show in support of his mother, Gretchen Brinkerhoff, who was diagnosed with multiple sclerosis in 1995. The concert was held Saturday, July 14, at Fast Eddie’s in New Milford and raised $3,700. • British nanny and motorcycle enthusiast, Debbie Fonseca, Bridgeport, convinced a local restaurant to donate proceeds from their annual motorcycle ride to the Connecticut Chapter. Mickey’s Third Annual Run for MS was held Sunday, Aug. 26, at Mickey’s Community Restaurant in Bridgeport and raised $3,275. • Rugby clubs from across Connecticut fought it out on the field Thursday, Aug. 16, at Sage Park in Berlin for the Sixth Annual Battle in Berlin. The annual rugby tournament, coordinated by Cromwell resident Chris Picard, raised $1,178. 17
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PHOTO: JOHN OWENS
Bloomfield Caregiver There for Her Man
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n 1999, just six months after being diagnosed with multiple sclerosis, James Mathis was fired from his job as a machinist on his 38th birthday. James fell into a deep depression. Luckily, he didn’t need to look far for help. “Diane,” said James, pointing to his smiling wife at their home in Bloomfield. “She’s still here; that says a lot.” Love keeps Diane around, but it isn’t easy. Diane stands by as MS affects her husband’s memory, eyesight and balance. James stubbornly tries to do things he used to do, but too often his attempts lead to injury. She mends his wounds. Her biggest challenge, though, is his mood swings. These rapid and unpredictable 18
changes in emotions can be one of the most challenging aspects of MS for families. “It takes patience, you have to overlook a lot,” said Diane, who works as an administrative assistant for the academic dean at Capitol Community College. “At times I want to get mad at him, but I know in those moments, it’s not him – it’s MS. His bad mood is fleeting.” James realizes his mood swings and takes measures to correct them. “I’ll get angry and yell and I don’t even know why,” said James. “I’ll go in the garage and work on a project to calm down, then I come back in and we talk. She gives me a kiss and then it’s alright.” Diane is the primary caregiver for her husband of 16 years. She keeps him eating healthy and manages their finances. She maintains
his schedule and takes him to his many doctors’ appointments (he also has type-2 diabetes). She attends caregivers meetings. She prays. James does his part too. He walks a mile three times a day. He attends MS family programs with Diane. He tries to stay positive and not let his disease get the best of him. And when he’s angry, he goes into the garage, collects himself, comes back, and Diane is there. November is recognized as National Caregivers Month. The chapter hosts quarterly meetings for caregivers to share their struggles and solutions with one another in an informal setting. To learn more, contact the chapter’s Programs Department at 800.344.4867.
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– Ronda Giangreco
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Connecticut Residents to Gather for Author
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ultiple sclerosis can rob families of much, too much sometimes. No one knew that better than Ronda Giangreco. Her husband, Michael, lost his mother when he was just 16 years old. The reason, complications associated with multiple sclerosis. But years later, in an ironic twist of fate, Ronda, too, was diagnosed with MS. Told that she might not be able to walk for much longer, she pondered where she might walk next. A passionate “foodie,” her next steps led right to her beloved kitchen. It was there that she decided she would make her indelible mark against MS. Uniting her passion for cooking with her quest to move forward, Ronda went on to concoct a plan that would have her preparing a full course meal for a table of eight each Sunday evening for a year – 52 weeks, to be exact. “I would triumph over MS one week at a time,” said Ronda, 57, who resides with her husband on a vineyard in Sonoma County, Calif. Ronda served up not only fabulous meals accompanied by California’s best wines, but also evenings full of great conversation, laughter and occasionally, even tears. She labeled the Sunday get-togethers, The Gathering Table. “What had been predicted to be a year of loss was in fact the fullest of our lives,” recounts Ronda, who has since gone on to share her experience with audiences nationwide. Ronda recently published a book recounting those special Sundays. Appropriately, her book is called “The Gathering Table, Defying Multiples Sclerosis With a Year of Pasta, Wine and Friends.” Ronda has been named the MS In My Life speaker for this year’s Greater Hartford Women Against MS Luncheon, to be held Thursday, Nov. 15, at the Connecticut Convention Center in Hartford. The luncheon event, which includes boutique shopping, will also feature reality star Jill Zarin and her sister, radio talk show personality Lisa Wexler. For more information or to register, visit www.ctfightsMS.org.
ZANNE CLARK PHOTOGRAPHY
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Sometimes it was very challenging, but every time I did it; that was another week I won.
Ronda Giangreco, diagnosed with MS in 2008.
SUPPORT GROUPS Please verify group meetings with leaders prior to attending as dates and times are subject to change and meetings may be moved due to holidays. The contact information provided should not be used for solicitation purposes. Additional support can be found online at www.msconnection.org.
The NEW HAVEN MS Support Group meets from 6:30 to 7:30 p.m. on the second Monday of each month at the Wexler-Grant School, 55 Foote St. in New Haven. Call Loren at 203.773.0878.
The BRANFORD MS Support Group meets on the first Wednesday of each month at 5:30 p.m. at the James Blackstone Memorial Library, 758 Main St. in Branford. Call Cheryl at 203.535.3053.
The NEW LONDON MS Support Group meets at 6:30 p.m. on the fourth Wednesday of each month at Lawrence & Memorial Hospital, 365 Montauk Ave. in New London. Call Eileen at 860.442.0711, ext. 4990.
The COLCHESTER MS Support Group meets from 10:30 a.m. to noon on the second Saturday of each month at 59 Harrington Court in Colchester. Call Ed at 860.537.1919 or Peggie at 860.267.9759.
The NORWALK MS Support Group meets from 1 to 3 p.m. on the first Friday of each month at the South Norwalk Library, 10 Washington St. in Norwalk. Call Sherry at 800.344.4867.
The DANBURY Caregivers MS Support Group meets on the second Wednesday of every month from 7 to 8:30 p.m. at the Main Street Rehab Center, 235 Main St. in Danbury. Call Joe at 203.264.2252.
The SHELTON professionally facilitated support group meets on the second Monday of each month from 2 to 3:30 p.m. at the Plumb Library, 65 Wooster St. in Shelton. Call Eric Szafran at 800.344.4867.
The DANBURY professionally facilitated support group meets on the second Wednesday of each month from 7 to 8:30 p.m. at the Main Street Rehab Center, 235 Main St. in Danbury. Care partners are welcome to attend a separate meeting. Call Eric Szafran at 800.344.4867.
The STAMFORD professionally facilitated support group meets on the second and fourth Thursday of each month from 7 to 8:30 p.m. at St. Camillus Health Center, 494 Elm St. in Stamford. Call Eric Szafran at 800.344.4867.
The DERBY MS Support Group meets from 4:30 to 5:30 p.m. on the third Wednesday of each month at Griffin Hospital, 130 Division St. in Derby. Call Lisa at 203.231.4716. The FARMINGTON MS Support Group meets at 1 p.m. on the second Sunday of each month at the UConn Health Center, Onyiuke Dining Room, at 263 Farmington Ave. in Farmington. This group focuses on cognitive symptoms of MS. Call Catherine at 203.451.2366. The GRANBY MS Support Group meets at 1 p.m. on the second and fourth Monday of each month at Salmon Brook Apartments, 287 Salmon Brook St. in Granby. Call Jane at 860.653.2436. The HAMDEN MS Support Group meets at 11 a.m. on the third Saturday of the month at the Playwright, 1232 Whitney Ave. in Hamden. Call Paul at 203.213.5466. For support in the MADISON area, call Karen at 203.245.4691. The MANCHESTER MS Support Group meets at 10 a.m. on the first Monday of each month at the Presbyterian Church of Manchester, 394 Lydall St. in Manchester. Call Nancy at 860.742.5155 or Karen at 860.875.9730. The MIDDLETOWN MS Support Group meets at 1 p.m. on the second Saturday of each month at Wadsworth Glen, 30 Boston Rd. in Middletown. Call Howard at 860.344.0888 or Mary at 860.828.5240. The MILFORD MS Support Group meets at 1:30 p.m. on the second Saturday of each month at Milford Hospital, 300 Seaside Ave. in Milford. Call Debbie at 203.878.6661 or John at 203.874.1225. The NEWINGTON MS Support Group meets at 7 p.m. on the second Thursday of the month at the Newington Senior and Disabled Center, 120 Cedar St. in Newington. Call Charlie at 860.667.1314 or Tom at 860.236.2751.
The STORRS MS Support Group meets from 6:30 to 8 p.m. on the second Tuesday of each month at the Mansfield Senior Center, 303 Maple Rd. in Storrs/Mansfield. Call Susan at 860.423.7413. The TORRINGTON MS Support Group meets at 4 p.m. the first Monday of each month at the Torrington Health and Rehabilitation Center, 225 Wyoming Ave. in Torrington. Call Debbie at 860.307.5935. A second TORRINGTON professionally facilitated support group meets from 7 to 8:30 p.m. on the second Wednesday each month at the VNS of Connecticut, 62 Commercial Blvd. in Torrington. Call Eric Szafran at 800.344.4867. The TRUMBULL MS Support Group meets on the third Tuesday of each month from 6:30 to 8 p.m. at the Trumbull Library, 33 Quality St. in Trumbull. Call Amy Watkins at 800.344.4867. The VERNON MS Support Group meets at 7 p.m. on the first Friday of each month in the Community Room at the Vernon Police Department, 725 Hartford Turnpike in Vernon. Call Nancy at 860.742.5155 or Marty at 860.749.7108.
MS COMPUTER OUTREACH PROGRAM
Invisible Symptoms Wednesday, November 28 6:30 – 7:30 p.m. Teleconference
The National MS Society’s Computer Outreach Program provides computers to people with multiple sclerosis who are restricted to their homes or live in a long term care facility. The chapter is looking for volunteers who are willing to take on the role of refurbishing donated computers and loading software and assistive/adaptive technology. The volunteer would then help train people on the new technology and media. Volunteers should have knowledge of Windows 7, troubleshooting, social media including Facebook, Twitter, and YouTube, and adaptive/assistive software such as Dragon Speech, Zoom Text and Skype. Volunteers should also be willing to follow-up with computer recipients on a monthly basis.
Caregivers’ Meeting November 2012 Hamden, Conn. Balancing the Medical and Practical Aspects of MS Tuesday, December 11 6:30 – 7:30 p.m. Teleconference MS: A Family Affair Wednesday, December 12 6:30 – 7:30 p.m. Teleconference Activist Training Saturday, January 26, 2013 10 a.m. – 2:30 p.m. Rocky Hill, Conn. MS Family Day with the Bridgeport Sound Tigers Sunday, February 10, 2013 Bridgeport, Conn.
For more information about this program, please contact Eric Szafran at 800.344.4867, ext. 52543, or email eric.szafran@nmss.org.
PAID ADVERTISEMENT
MS Action Day March 2013 Hartford, Conn.
To register please visit www.ctfightsMS.org.
The WATERBURY MS Support Group meets at 5:30 p.m. on the third Wednesday of each month at the Joseph Jaynes Building, 77-79 Bishop St., Function Room in Waterbury. Call Karen at 203.754.9656.
MS CLASSIFIEDS
A second WATERBURY MS Support Group meets at 6 p.m. on the third Monday of each month at the Village at East Farms, 180 Scott Rd. in Waterbury. Call Jackie at 203.753.2708.
FOR SALE L300 footdrop device. Best offer. Call Pat, 860.748.4282.
The WEST HAVEN MS Support Group meets at 11:15 a.m. every Thursday at the West Haven Veterans Administration Hospital, Building 2, on the third floor, located at 950 Campbell Ave. in West Haven. This support group is open to veterans only. Call Mary Lou at 203.932.5711, ext. 2276.
FOR SALE 2011 Toyota Sienna XL2 minivan with Braun side discharge ramp. Sunroof, leather, low mileage. Asking $34,000. Call Charlie, 860.667.4314.
Be sure to visit www.ctfightsMS.org and click on the “Programs” button to find out the most up-to-date information on the vital programs and services offered by the Connecticut Chapter. Infoline 24-hour counseling Dial “211”
PROGRAMS CALENDAR
FOR SALE Brand New Hov Around Chair, never used. Gray with brand new batteries. Call Lynn Marie at 203.753.1882. To submit an ad, contact John Owens, Editor in Chief, at 860.913.2550, ext. 52549, or email john.owens@nmss.org.
Samaritans 24-hour support 860.232.2121 22
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Symptom Management: Pseudobulbar Affect
P
eople living with multiple sclerosis can experience a wide range of emotional conditions. One of those conditions is pseudobulbar affect (PBA), a neurologic disorder that causes sudden, frequent, and involuntary episodes of laughing or crying without corresponding emotions behind the outbursts. According to Michelle Brisman, Ph.D., clinical neuropsychologist at Mount Sinai Rehabilitation Hospital in Hartford, PBA is not fully understood. “Pseudobulbar affect appears to be associated with neurological connections linked to the control of emotions,” said Brisman. While PBA is thought to affect only 10 percent of people with MS, symptoms of PBA can be severe, which may in turn lead to embarrassment, anxiety, depression and social isolation. As a result, PBA can have a significant negative impact on patients, their families and their caregivers. Pseudobulbar affect can be difficult to diagnose, because it is similar to other emotional symptoms of MS, including euphoria and depression. Like any MS symptom, PBA can be mild, moderate, or severe. More subtle (mild) forms can be more difficult to diagnose. “Pseudobulbar affect is often misdiagnosed as depression and therefore, may not be treated in the most effective manner,” said Brisman. “Diagnosis of PBA can be made by testing what triggers the emotional response, and observing the response in terms of the length of the outburst and what the patient is experiencing internally. In other words, they may be showing an emotion that is not connected to what they feel.” Furthermore, the embarrassment, anger, and frustration involved with PBA can lead to difficulty communicating with a doctor about it. But according to Brisman, knowledge is key. “It is critical to increase awareness of the disorder so that people with MS can discuss their symptoms with their medical team, achieve a proper diagnosis and consider treatment options,” said Brisman. “It’s important to note that these emotional reactions are not under their control due to the neurological disruption. There’s no reason to be embarrassed for something that is out of their control.” In a video interview on the National MS Society’s YouTube page, Sarah Minden, M.D., psychiatrist at the Brigham and Women’s Hospital in Boston and professor at Harvard Medical School, echoes Dr. Brisman’s advice. “It’s important that people feel comfortable talking with their doctors about it, because some of the symptoms may be very subtle,” said Minden. “It doesn’t have to happen very often, but even just a couple times can be very distressing. People should feel free to explain to their doctor what happened and say, ‘could this be PBA?’ and if it is, ‘does medication make sense?’” In January 2011, a new drug Nuedexta, was approved for the treatment of PBA. Neudexta, a combination of dextro-metho24
PLANT AN MS FLAG OF HOPE
rphan, a cough suppressant, and quinidine, which acts as an antiarrhythmic agent in the heart, is proven to help with the controlling of the episodes so they are milder and fewer. It is important to talk with a physician to see if medication is the proper course of treatment. With PBA, communication is always essential, including within the family. “Families can also be a great resource of information about a patient’s behaviors and assist with diagnosis,” said Brisman. “Many times, achieving a proper diagnosis will improve how a patient and family cope with the symptom.” The National MS Society offers an online webcast series on its YouTube page called “MS Learn Online” at www.youtube.com/ user/NationalMSSociety which features the interview with Dr. Minden about PBA. For more information on MS symptoms and available resources, please visit www.nationalMSsociety.org.
Raise your voice Be an MS Ambassador
Join The Movement | MS Action Day March 2013, Hartford State Capitol For more information or to register, call Susan Raimondo at 800.344.4867, ext. 52529, or email susan.raimondo@nmss.org
MS Activist Training Saturday, January 26, 2013 Snow Date: Saturday, February 2, 2013 10:45 a.m. to 2:30 p.m. Stepney Room, lower level Cora J. Belden Library Rocky Hill, Connecticut For more information or to register, call Susan Raimondo at 800.344.4867, ext. 52529, or email susan.raimondo@nmss.org.
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IN THE RAYMOND P. HOWELL LIBRARY
Call For Applications: College Scholarship Program
BOOK
WHAT NURSES KNOW… MULTIPLE SCLEROSIS. The Answers You Need From The People You Trust.
The Connecticut Chapter is accepting submissions for the 2013 National MS Society College Scholarships Program funded by the Hayley’s Hope and Michaela’s Miracle MS Memorial Fund and the National MS Society. Scholarships are awarded to high school seniors who either have multiple sclerosis or have a parent with MS. Candidates must demonstrate courage, perseverance and academic prowess in the face of the many day-to-day challenges associated with multiple sclerosis.
Written by Carol Saunders and published by Demos Health, 2011. 144 pages
The Pyne-Davidson Company C O M P L E T E P R I N T I N G S E RV I C E S S inc e 1930
DVD
BEYOND DISABILITY: A YOGA PRACTICE WITH MATTHEW SANFORD A mind and body approach to living with a disability. Produced by Mind Body Solutions, 2011. 56 minutes.
Applications are currently being accepted online. The deadline to submit applications is January 15, 2013. To apply, please visit www.ctfightsMS.org.
Hayley's Hope & Michaela's Miracle MS Memorial Fund Continuing the Work of the Petit Family
SAVE THE DATES!
CALENDAR OF EVENTS THURSDAY, NOVEMBER 8 MS Dinner of Champions Hyatt Regency, Old Greenwich
THURSDAY, MARCH 14, 2013 Greater Hartford MS Taste of Hope The Society Room, Hartford
SUNDAY, APRIL 21, 2013 Walk MS , presented by Travelers 12 locations across Connecticut
FRIDAY, NOVEMBER 15 Women Against MS Luncheon of Hartford County Connecticut Convention Center, Hartford
THURSDAY, MARCH 21, 2013 Greater New Haven MS Taste of Hope Yale Peabody Museum of Natural History, New Haven
SUNDAY, June 2, 2013 Bike MS – Windsor
*For programs, refer to page 23. For more information on these and other events, visit ctfightsMS.org.
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SUNDAY, June 9, 2013 Bike MS – Westport
Established in 1930, The Pyne-Davidson Company offers superior quality printing services. Customer driven, The Pyne-Davidson Company meets the printing needs of businesses around the world. Pyne-Davidson is known for its flexible approach to customer service, state-of-the-art secure pre-press department and a modern pressroom featuring single and multi-color capabilities. The Pyne-Davidson Company has been a proud partner in the fight against MS for more than 17 years. For more information on services, capabilities and client testimonials, visit www.pyne-davidson.com or call 800.673.2487.
237 W eston Street, Hartford, CT 06120 860.522.9106 • 800.673.2487 • fax 860.522.0057
Wishing you joy and peace throughout the holiday season. Warm regards, The National MS Society, Connecticut Chapter