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MS StopS people froM MovIng.

We exist to make sure it doesn’t.

AJ, diagnosed with MS in 2000

By sean o’Leary, CommuniCations speCiaList

The Year In ReviewChapter

Programs News

In 2010, the continued decline of the economy meant that the needs of

people living with MS remained greater than ever. The National Multiple Sclerosis Society, Connecticut Chapter, stepped up by providing critically-needed crisis assistance, valuable referrals and crucial MS education.

An example of the chapter’s ability to enhance quality of life occurred in the spring through a collaboration between the chapter, The ReCONNstruction Center in New Britain and Pelton’s Home Health Care Center in Wethersfield. The groups worked in concert to acquire a donated stair lift and free installation for Renee Jacinto, a Cromwell resident who had lived with MS for more than two decades. Jacinto’s disease has robbed her of mobility and independence, leaving her unable to walk.

“My life has changed dramatically. no one is ‘normal’ but I wish I could do the things I want to do – the things I used to do. I can’t drive and getting around is very difficult. But the stair lift is great. I’m grateful to

everyone for partnering together to make it happen.”

– Renee Jacinto, Cromwell, diagnosed with MS in 1990.

The chapter has also reached out to today’s youth involved in the fight against MS by awarding five college scholarships funded through the Hayley’s Hope and Michaela’s Miracle MS Memorial Fund. The 2010 recipients included Jennifer Peat, of Bethany, Victoria Leon, of Southington, Jennifer Thyng, of Rocky Hill, Kyle Nelson, of Cheshire, and Corey Fechter, of Wilton.

Combined, more than $10,000 in scholarships were awarded in 2010. Each student demonstrated perseverance and academic prowess in the face of living with MS or having a parent or guardian diagnosed with the disease.

“I cannot remember a day living without MS. But when all is

said and done, MS has changed my life for the better. Since my diagnosis, I only focus on the positive and the things I can

control. Multiple sclerosis has taught me that there is no sense

worrying about the things for which I have no control and

cannot change.”

– Corey Fechter, Wilton, diagnosed with MS in 2008 at age 15.

Throughout 2010, the chapter hosted teleconferences and group meetings dealing with specific topics related to MS. Among the teleconferences were the “Can We Talk?”

series, which dealt with issues for those newly diagnosed, and the “Employment Teleconference Series,” which explored employment issues. In September, the chapter hosted MS Family Day at the Connecticut Science Center in Hartford, allowing families statewide to meet other families familiar with the day-to-day issues of having a member diagnosed with MS.

The past year was a very successful year for MS research, as both the first oral therapy for MS and the first therapies designed for specific symptoms of MS were approved by the U.S. Food and Drug Administration.

Granby resident Juanita Malone, right, and her daughter, Kelly Sterling, Simsbury, attend a presentation by author and neurologist Allen Bowling, M.D., Ph.D., on complementary medicine and multiple sclerosis at Mount Sinai Rehabilitation Hospital in Hartford. Sterling, 35, was diagnosed with MS in 2006. In an ironic twist of fate, in 2009 at the age of 61, Malone was also diagnosed with multiple sclerosis.

MS Community Day Brings Families Together

Guests at the 2010 MS Community Day react to a fly ball hit to the outfield during a New Britain Rock Cats game. The event is supported by the Hayley’s Hope and Michaela’s Miracle MS Memorial Fund.

Nearly 200 people living with multiple sclerosis and their families attended a New Britain Rock Cats game in May as part of MS Community Day. The event was generously supported by the Hayley’s Hope and Michaela’s Miracle MS Memorial Fund, an endowment fund established by the Petit family after the tragic loss of Jennifer, Hayley and Michaela.

For the event, the Connecticut Chapter and the New Britain Rock Cats provided a full pre-game buffet, tickets for the game and displayed the chapter’s logo on the stadium’s big screen video screen. Chapter staff and volunteers were outside New Britain Stadium, distributing information about multiple sclerosis, chapter programs and fundraising events.

The Hayley’s Hope and Michaela’s Miracle MS Memorial Fund will support several chapter events in 2011, including MS Family Day at a Bridgeport Sound Tigers game in February. The chapter and the Rock Cats are teaming up again Friday, May 20, for this year’s MS Community Day. For more information, please contact the chapter at 860.913.2550 or visit www.ctfightsMS.org.

2010 fInAnCIAlSBalance sheetview the Connecticut Chapter’s financial report for fiscal Year 2010. pAge I-4

MS DInner of CHAMpIonSsports Greats Lead the Waytwo new York sports greats and an eSpn personality helped the chapter raise more than $260,000. pAge I-2

reSeArCH BreAKtHroUgHSFirst oral drug approved In 2010, Gilenya became the first fDA-approved oral therapy for relapsing-remitting MS. pAge I-3

BoArD of trUSteeSConnecticut Chapter LeadershipMeet the Connecticut Chapter’s Board of trustees members and officers. pAge I-4

MS tASte of HopeCooking up Funds For a Curethe Chapter hosted MS taste of Hope events in Fairfield County, new Haven and Hartford. pAge I-2

nAtIonAl MS SoCIetY, ConneCtICUt CHApter2010 AnnUAl report eDItIon MS ConneCtIon InSert

(Continued on Business Page.)

The Connecticut Chapter Times nAtIonAl MS SoCIetY, ConneCtICUt CHApter,

659 tower Ave., fIrSt floor, HArtforD, Ct 06112

+1 860.913.2550www.ctfightsMS.org

pHoto: KAren e. BUtler

pHoto: SeAn o’leArY

By sean o’Leary,CommuniCations speCiaList

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Top Chefs, Chapter Partner For MS Taste Of Hope

Sports Greats Boost MS Dinner of Champions

WAMS Luncheons Raise More Than $140,000

Golfers Tee Off Against MS

Anthem Blue Cross and Alliance Energy Honored At 2010 MS Gala

By sean o’LearyCommuniCations speCiaList

Sumptuous cuisine and fine wine were a perfect pair for the Connecticut

Chapter at its trio of MS Taste of Hope events across the state in 2010. In total, the three events combined to raise more than $45,000 for the chapter.

The Greater Hartford MS Taste of Hope at The Society Room in downtown Hartford attracted about 200 guests and included nearly two dozen of Greater Hartford’s top restaurants and beverage vendors.

In May, the chapter hosted the first annual Greater New Haven

MS Taste of Hope, which attracted more than 100 guests to the Yale Peabody Museum of Natural History in New Haven. News 8 health reporter Jocelyn Maminta served as the mistress of ceremonies for the tasting.

The third tasting took place in September with the MS Taste of Hope, Fairfield County at the Aitoro kitchen showroom in Norwalk. Orange-based PEZ Candy Inc. CEO Joseph Vittoria, who rode in on the company’s PEZ-themed chopper made by Orange County Choppers, was among the more than 150 guests who attended.

Rod Smith, left, of Danbury, poses with Kim Martin, of Norwalk, at the MS Taste of Hope, Fairfield County in September.

Singer and songwriter David Osmond made his mark against multiple sclerosis in fiscal year 2010 by headlining the chapter’s Women Against MS (WAMS) Luncheons in Hartford and Fairfield County. In Oct. 2009, Osmond spoke and performed at the NBC Connecticut WAMS Luncheon and, in May, Osmond headlined the WAMS Luncheon of Fairfield County in Greenwich. The two events combined to raise more than $140,000 for the chapter.

Osmond, diagnosed with MS in 2006, will return for the 2011 WAMS Luncheon of Fairfield County at the Hyatt Regency in Old Greenwich Friday, May 6. Osmond will be joined by his father Alan, a member of the famed Osmond Brothers singing troupe who has also battled MS for more than 20 years.

Golfers planted their tees in the ground and struck a drive down the fairway for a good cause during the sixth annual Golf MS Classic.

The event, presented by Dominion, attracted golf enthusiasts from across the state and raised more than $80,000 for the Connecticut Chapter. Golfers played the picturesque Lake of Isles course in North Stonington in September before enjoying a post-round dinner.

The 2011 Golf MS Classic will tee off Monday, Sept. 26, on the exclusive private course at the Lake of Isles.

The Connecticut Chapter honored Anthem Blue Cross and Blue Shield president David R. Fusco and Branford-based Alliance Energy LLC at the 2010 MS Gala held at Mohegan Sun Sunday, June 13.

Fusco was named the MS Connecticut Citizen of the Year. Fusco and Anthem Blue Cross and Blue Shield have partnered with the chapter since 1995. The chapter honored Alliance Energy LLC with the 2010 MS Hope Award. John Gargano, executive vice president for Alliance Energy, accepted the award.

Two New York sports greats and an ESPN personality helped the 31st annual MS Dinner of Champions attract more than 250 guests and raise more than $260,000 for the Connecticut Chapter.

ESPN baseball analyst Bobby Valentine, a Stamford native

pHoto: Steve AnneCHArICo

Fundraising

and former manager of the New York Mets, emceed the event. Former New York Mets outfielder William Hayward “Mookie” Wilson and former New York Giants running back Joe Morris were honored with the J. Walter Kennedy Memorial Award.

Erik Anderson, North American Region CEO for the Louis Dreyfus Group in Wilton, accepted the 2009 MS Hope Award for the company, which has been involved with the chapter since 1992. Kevin Segalla, President of the Connecticut Film Center, received the MS Champion of the Arts Award.

Fleming’s Steakhouse director of private dining Liz Hadley, left, poses with assistant chef Tom Strano at the 2010 Greater Hartford MS Taste of Hope in February.

From left, Anthem Blue Cross and Blue Shield president David R. Fusco, Alliance Energy LLC, executive vice president John Gargano and Alliance Energy LLC president Andrew Slifka take a moment to pose during the 2010 MS Gala.

national MS Society, Connecticut Chapter, 2010 Annual report

pHoto: rICHArD eSpoSIto

pHoto: rICHArD eSpoSIto

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been put online and placed in the public domain, allowing MS researchers from across the world to access it.

In 2010, Hafler partnered with the Connecticut Chapter to raise awareness about MS research and the emerging field of genetics in MS. Hafler was interviewed for a News 8 story about genetic research and he spoke at the chapter’s MS Research Night, held in May at the Hartford Marriott in Rocky Hill.

Yale Chief Neurologist Honored For MS Genetic Breakthrough

Clinical Trials Provide Answers For MS Research

First Oral Disease-Modifying Drug For Relapsing MS Approved

Symptom Specific Drugs Approved For People With MS

Female Sex Hormone Could Be Used To Treat MS

By sean o’LearyCommuniCations speCiaList

One of the biggest breakthroughs in MS research in 2010 was

led in part by David Hafler, M.D., Professor and Chairman Department of Neurology for the Yale School of Medicine and the Neurologist-in-Chief of Yale-New Haven Hospital in New Haven.

Hafler received the prestigious John Dystel Prize for Multiple Sclerosis Research from the American Academy of Neurology for his work with the International MS Genetic Consortium. Hafler is a founding member of the organization, which in early 2010 completed a collaborative, genetic analysis of more than 17,000 people living with MS. The analysis revealed the thousands of common gene variants associated with multiple sclerosis.

“It is an amazing acomplishment that took nearly three years and the hard work and dedication

of hundreds of people,” shared Hafler. “The study is now completed and we can begin to sift through the common variances in people living with MS on our way to finding the rare variance genes.”

Determining the rare variance genes is, as Hafler described, the “end game” in genetic research but cannot be accomplished without first finding the common genes. The thousands of data points that make up the common gene variations have

News 8 health reporter Jocelyn Maminta interviews Hafler.

In a landmark moment for MS treatment, the U.S. Food and Drug Administration approved Gilenya (fingolimod, Novartis International AG) for relapsing forms of MS, making it the first oral disease-modifying therapy available for those living with multiple sclerosis.

Gilenya works by binding to a docking site on immune cells, including T cells and B cells, which have been implicated in causing nervous system damage in MS. The drug appears to induce some immune cells to remain in lymph nodes, inhibiting them from migrating into the brain and spinal cord.

The FDA’s approval came after the results from two large-scale phase III clinical trials were published in 2009 that showed Gilenya significantly reduced relapse rates and disease activity as measure by MRI. In a one-year trial, the drug was found to have a greater impact on relapse rates than interferon beta-1a (Avonex, Biogen Idec).

Novartis, the company marketing Gilenya, has announced that it will conduct a post-marketing safety monitoring study of roughly 5,000 individuals taking the drug to gather information about adverse events and long-term safety.

The U.S. Food and Drug Administration approved two drugs in 2010 that treat specific symptoms of those living with multiple sclerosis.

In January, Ampyra (fampridine SR, Acorda Therapeutics) was approved for its ability to improve walking in people with any type of MS. The drug is a tablet containing a sustained-release formula of 4-aminopyridine, which blocks tiny pores on the surface of nerve fibers. The blocking ability was shown to improve the conduction of nerve signals in nerve fibers whose insulating myelin coating had been damaged by MS.

Ampyra became available for prescription in March. The drug has been prescribed to those with all types of MS and clinical trials found that more than 40 percent of people taking the drug had improvement in their walking speed.

Later in 2010, the FDA approved Nuedexta (AVP-923, Avanir Pharmaceuticals) to treat uncontrollable laughing or crying, known as the pseudobulbar affect, or PBA.

It has been estimated that 10 percent of people living with MS experience episodes of uncontrollable laughing and/or crying that are unpredictable and have no relationship to the individual’s actual feelings.

In July, the National MS Society began a two-year controlled clinical trial at 15 medical centers nationwide investigating the use of estriol, a female sex hormone, in addition to standard therapies to treat MS. If successful, the trial could lay the groundwork for a larger, definitive trial to find a new treatment option for women with MS in pill form, not an injection.

The $5 million study is being funded by the National MS Society and the National Institute of Neurological Disorders and Stroke.

Estriol levels rise to very high levels naturally during the latter stages of pregnancy, a time when most women’s MS disease activity declines. A small, early-phase trial of 12 women in California found that estriol treatment decreased disease activity in women with relapsing-remitting MS.

The National MS Society provided $36 million to support new and ongoing MS research projects, including 129 studies across the country. Among the ongoing clinical trials include studies of oral therapies for treating MS or its symptoms, novel agents such as green tea extracts and a study of the antioxidant idebenone in people with primary-progressive MS.

In Connecticut, there are currently eight ongoing clinical trials, including a study on the effect of a low-fat diet for those living with MS and a study into

the effectiveness for people with progressive MS of Gilenya, the first oral drug approved for relapsing-remitting MS.

Clinical trials help to determine if a drug is safe and effective for people with MS. People with MS who are willing to volunteer in these studies make it possible for all of us to look forward to new and better therapies.

To learn about ongoing studies or how to participate in new studies, please visit www.nationalMSsociety.org and search for “Clinical Trials.”

pHoto: Steve AnneCHArICo

Research

The website includes a list of studies searchable by state and a “frequently asked questions” page.

David Hafler, M.D., left, poses with Greenwich residents Liliane Haub, diagnosed with MS in 2001, and her husband, Christian, during MS Research Night in May.

Watertown residents Patrick and Christie McGrath take a moment to pose during MS Research Night. Christie McGrath has lived with MS since 1998.

national MS Society, Connecticut Chapter, 2010 Annual report

REVENUES $$$ %other Income $193,078 4%

Memberships and Contributions $845,573 19%

Bequests and legacies $11,172 0%

Donated Services, programs, Materials $5,000 0%

Special events $2,796,563 64%

Combined Health Appeal and fSC $174,439 4%

Direct Mail program $353,550 8%

TOTAL $4,379,375 100%

EXPENSES $$$ %Client and Community Services $2,918,190 67%

national programs and research $496,986 11%

Direct Benefit to Donor $271,836 6%

Management and general $304,890 7%

fundraising $324,651 7%

Increase in net Assets $62,800 1%

TOTAL $4,379,353 100% Client and Community Servicer, 67%

Increase in Net Assets, 1%Fundraising, 7%Management

and General, 7%

Direct Benefitto Donor, 6%

National Programsand Research, 11%

EXPENSES

Client and Community Services 67%national programs and research 11%Direct Benefit to Donor 6%Management and general 7%fundraising 7%Increase in net Assets 1%

Richard “Dick” Simione C.p.A., Chairperson

Diane Biegel, Ph.D.

Stephen Borsy

Selma Cagatay-Searfoss,

M.S.W.

Michael Cummings

Michael Lech

Steven J. Malkiewicz

Shelley Marcus, Esq.

Ira Millman

Mark E. Ojakian

Daniel A. Doty

John R. Formica, C.P.A.

Carol Gilbride

Jeffrey L. Gross, M.D.

Karen Guarnaccia

Janet M. Pierpont

David S. Rosenblum, M.D.

Everett G. Sussman, Esq.

Peter B. Wade, M.D.

Terrance Walsh

Programs News(Continued from Page I-1.)

2010 BoArD of trUSteeS

oFFiCers

memBers

FiSCAL YEAR 2010 ANNUAL REPORT

Business

national MS Society, Connecticut Chapter, 2010 Annual report

James T. Birchall C.p.A., C.f.A. treasurer

Mary A. RauscherSecretary

The Connecticut Chapter Times nAtIonAl MS SoCIetY, ConneCtICUt CHApter,

659 tower Ave., fIrSt floor, HArtforD, Ct 06112,

+1 860.913.2550www.ctfightsMS.org

John “Jack” W. Betkoski, III vice Chairperson elect

Peter R. Porrinovice Chairperson

Jennifer L. Cox, Esq. Immediate past Chairperson

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Chapter members in Connecticut were able to stay informed through a Speakers Series that included noted MS researchers from across the country and MS Research Night, held in May.

The chapter’s Care Management Program assisted nearly 100 individuals facing complex health, safety and financial challenges due to MS. Care managers worked to coordinate resources that reduce isolation, increase personal safety and independence and improve financial resources.

In addition, the chapter’s Financial Assistance Program provided roughly $100,000 in assistance and donated good and services to help people with MS purchase adaptive equipment and technologies to make working easier. The funding was also used to provide short-term homecare, build ramps and meet crises, such as assisting with costly cooling or heating services.

Advocacy for people in Connecticut living with MS came to the forefront in March during the annual MS Action Day at the State Capitol in Hartford. More than 50 people diagnosed with MS attended the event, during which they met their local legislators and showed their support for policies and government programs that enhance their lives.

The year ahead, while expected to be challenging, should be exciting and vibrant for the chapter. The Programs and Services Department has much on its agenda and is prepared to energetically assist those depending on the chapter most. For a complete listing of programs and services offered by the chapter or to locate dates and times, please visit www.ctfightsMS.org.