Winter 2011 MS Connection

Page 1

CONNECTION MOVING TOWARD A WORLD FREE OF MS Winter 2011 Upstate New York Chapter

2011 - A Milestone Year

by Stephanie K. Mincer, LMSW, MSSMC is going to be an exciting year for we are making progress in the fight against the Upstate New York Chapter. This MS. It is always a good day when we can make year the chapter celebrates its 60th anniversary a difference in the life of a person or family as an organization dedicated to finding the living with MS. Certainly it was a good day in cure for MS and helping 1993 when Betaseron was announced as the those living with MS. first approved disease modifying drug. There Throughout this edition have been more good days as other drugs of MS Connection you have been approved. And just last fall, there will read about how was another good day when the first oral the Upstate New York medication, Gilenya, was approved! Chapter started as Working with the clients at the MS Society five smaller chapters inspired me to continue my education and and grew into an become a master’s level social worker. Anytime organization covering I could improve someone’s quality of life by Stephanie K. Mincer a total of 50 counties connecting him or her with a program or serving nearly 12,000 families. service offered by the chapter or community… it was a good day! I remember working with 2011 is also an exciting year for me some volunteers during our summer camp personally. I will be celebrating my 30th anniversary with the chapter, and as the saying program to help a woman with a progressive form of MS get into the pool. I remember goes, “time flies when you’re having fun.” It putting her in a floating chair and how she doesn’t seem that long ago that I applied for cried tears of joy because it was the first time the position of bus driver/recreation assistant in 30 years since she had been in a pool…that in 1981 with RAMS, as the Rochester based was a good day! Chapter was known at the time. Little did I The day the MS Achievement Center was know then that it was just the first step in a opened – a good day! Every spring watching long, happy career working for a cause I am hundreds of supporters cross the finish line passionate about and with people that I care at Walk MS – good days every one of them about deeply. no matter what city or town I have been in. The other day, someone asked me “what Sharing lunch with cyclists at Bike MS – a good does a good day at work look like for you day. Congratulating award winners at Buffalo’s when you’re up against a terrible disease like MS.” I thought it was an odd question Dinner of Champions – a good day. Thanking because I think every day is a good day when continued on pg 4

2011


2011 Chapter Board Members Upstate New York Chapter www.msupstateny.org www.nationalmssociety.org email: michelle.prue@nmss.org

Chapter Offices

Officers

Steven V. Modica, Esq....................................... Chair Thomas Sanderson...................................Vice Chair Christine Sisto Mertes..............................Vice Chair James J. Smith.............................................Secretary Richard Page................................................ Treasurer

Directors

Albany Office 421 New Karner Road, Suite 6 Albany, NY 12205-3838

Binghamton Office

457 State Street Binghamton, NY 13901-2399

Buffalo Office

4245 Union Road, Suite 108 Buffalo, NY 14225

Rochester Office

1650 South Avenue, Suite 100 Rochester, NY 14620-3901

Syracuse Office

P.O. Box 813 Fayetteville, NY 13066

All offices can be reached by calling 1.800.FIGHT MS (1.800.344.4867) Clinics/Health Centers

Robert W. August Susan F. Bartkowski, Esq. Kathy Birk, MD Daniel A. Clifton Luz M. Cruz, EdD Patricia Dow Keith Edwards, MD Daniel J. Farberman Karen M. Gallina Richard G. Kazel Bryan Kenny, CPA Richard J. Mengel, CPA James E. Metzler, Esq. Thomas D. Muller Randy L. Saltzman Richard Satran, MD Karen L. Waldron Eric W. Zaenglein, CPA

Visit our website for a list of National MS Society affiliated clinics

Editor - MS Connection Michelle Kraft

Executive Management Team

Stephanie K. Mincer, LMSW, MSSMC – President and CEO Barbara J. Bennett, CPA - Vice President, Finance Valerie King Hoak - Vice President, Chapter Resource Management

2

JOIN THE MOVEMENT: nationalMSsociety.org


A Look Back at the Last Thirty Years by James P. Ahearn CSW, Chapter President 1979-2005

traditional programs and some were being inappropriately placed in nursing homes with elderly populations. After ten years of study, research and planning, in partnership with Unity Health System, we established the MS Achievement Center at the Park. It was the second of its kind in the country and it continues to be a dynamic medical model day treatment program which provides medical and therapeutic recreation for people with more progressive MS and needed respite for their families. Another project that I am particularly proud of was the introduction of accessible housing for people with MS. Howitt House opened in 1996 as a partnership with the Al Sigl Center and the Epilepsy Association of Greater Rochester. This allowed us to meet a crucial housing need for people with MS. The MS Achievement Center and Howitt House are national models for long term care programs for people with MS. In 1998, the Chapter in Rochester merged with Chapters in Syracuse and Binghamton to broaden the service delivery in Upstate New York. Albany joined in 2002 and Buffalo merged in 2007 to complete what is now the Upstate New York Chapter. Over the past thirty years there have been many clinical and social advances for people with MS. From the very beginning, the National MS Society relentlessly supported research to uncover the mysteries of MS. When I started with the MS Society there were no medications for MS and in 1993 when Betaseron was finally approved by the FDA, it was a huge breakthrough. It was great to see that

CHAPTER NEWS

I

t was my honor to lead the Upstate New York Chapter for 26 years. When I joined the Rochester Chapter in 1979 it was known as Rochester Area Multiple Sclerosis (RAMS) and served approximately 300 people with MS and their families in Monroe, Wayne, Ontario and Livingston counties. The chapter had a strong recreation program with an overnight camp program, a van for transporting people in James P. Ahearn wheelchairs, a single social worker and a Board of Directors strongly committed to expanding our mission. During my first years and, throughout my tenure, we worked hard to increase revenue – from United Way, special events, grants, annual appeals and major gifts from philanthropic donors – to increase and develop local service programs and fund critical MS research. Through the 1980’s and into the 1990’s we developed award winning programs and comprehensive services for people living with MS and their family members. Our MS census increased by 1,000 families, outreach services were enhanced in Wayne, Ontario and Livingston counties, we supported a nursing position at the MS Clinic at Strong Memorial Hospital, and advocacy became a passionate force for our Chapter. During my tenure we actively sought ways to provide services for younger, more progressively challenged MS clients as many of them were too disabled to attend our

TOLL FREE NUMBER 1 800 344 4867

3


CHAPTER NEWS

researchers were making significant progress. It was a huge motivator to drive fundraising to continue the progress until the cure is found. Another highlight of my career with the MS Society was the passing of the Americans with Disabilities Act in 1990. I was thrilled to be a part of the NMSS delegation at the White House for the official signing ceremony to witness first-hand the efforts of so many activists who fought for this important legislation. I have many fond memories of my years with the Upstate New York Chapter. What has impacted me the most were the relationships that I formed with the people that I met along the way. I was always inspired by the enormous courage of our clients and their families. I

am proud of the dynamic staff members that I worked with who always said yes to constant change and new challenges. I was motivated by our forward looking, dedicated Board of Directors and I was encouraged by the wonderful medical staff and scientists whose determined pursuit of answers led to treatment breakthroughs. And, I thank our National MS Society for their support and leadership and for encouraging chapter staff to serve on the national level. I was fortunate to be a part of the National MS Society during a period of so much change and growth. Although I am retired I will always be a proud member of the MS family and will continue to support our Chapter and the National MS Society in their profound and essential mission.

MILESTONE YEAR continued from pg 1 volunteers at any number of programs – all good days! Creating the MS Independence Program and developing a fund that provides emergency financial assistance to provide accessible home and vehicle modifications so individuals with MS can maintain their independence…that was a good day! When staff and volunteers came together for our first ever MS Service Day to help families living with MS clean, organize, and repair their homes… that was a good day! When I am out of the office traveling around the state giving voice to those living with MS by telling their stories to raise money for research and programs and services… these are all good days! When those stories

4

motivate people to become donors, event participants, ambassadors, and volunteers, progress is being made in the fight against MS and that’s a good day! And when those same people connect me with others who want to join the movement by supporting our mission…that’s a good day! The best days are ahead though. When the day comes where I can leave my office with my belongings, locking the door for the last time never to return because we, relentless in our effort, have figured out how to stop disease progression, restore function, and end MS forever. That’s not going to be a good day…it’s going to be an unforgettable day. And until that day comes, we are unstoppable!

JOIN THE MOVEMENT: nationalMSsociety.org


Chapter Welcomes New Staff

Emilie Higgins, joined the Chapter as Advocacy and Programs Coordinator in the Albany office. Emilie is a graduate of Hartwick College with a Bachelor’s in Psychology and Political Science in 2003 and then received her Master’s in Forensic Psychology in 2006 from Marymount University. During graduate school Emilie volunteered with the National MS Society in Washington, DC to learn more about the disease her mother had been diagnosed with for many years. While volunteering, Emilie created a WALK MS team in her mother’s honor. Karen’s Dream Team has participated in several Walk MS events in DC, NYC and Albany and was inducted in the Chapter’s Top 50 Club!

Elizabeth Morrison, Assistant Campaign Manager in the Rochester office, began helping the Upstate New York Chapter in June of 2010 as a full-time Intern. She joined the staff in October to coordinate the Batavia and Canandaigua Walk MS sites and to support Bike MS: Finger Lakes Challenge. She has a Bachelor’s degree from the University of Rochester where she studied Health and Society as well as Economics.

CHAPTER NEWS

T

he Upstate New York Chapter is pleased to announce that Greg Buzulencia has joined the Chapter as the Bike MS Manager in the Rochester office. Greg is a graduate of the Computer Engineering program at Rochester Institute of Technology. His passion for events started when he directed the inaugural RIT Indoor Triathlon. Since then he’s worked as the Event Director of YellowJacket Racing, an event production company in Rochester specializing in running and triathlon events. Greg also spent time as the Course Director and Assistant Executive Director of the Tour de New York professional bike race. He is excited to utilize his experience to grow the Upstate New York Chapter’s Bike MS events.

Beth Curtis has joined the Chapter as a Programs Coordinator in the Buffalo office. Beth has a Bachelor’s in Psychology from University of Connecticut and Master’s in Mental Health Counseling from Medaille College.

Look for our 60th Anniversary Celebration logo in the next 3 issues of the MS Connection to see snapshots of the past 60 years. To donate to the Upstate New York Chapter to commemorate the 60th Anniversary Celebration and help us continue funding award winning programs and services and critical research, visit www.msupstateny.org and click on 60th Anniversary Celebration.

TOLL FREE NUMBER 1 800 344 4867

5


PROGRAMS

Get Invoved at MS Service Day June 11th Join us for our second annual MS Service Day on Saturday, June 11th! MS Service Day is a full day event supported by community sponsors, local businesses, and teams of volunteers who go into the homes of people with MS to perform household chores and light repair work – projects the person with MS may no longer be able to perform because of the effects of multiple sclerosis.

How can I make a difference on MS Service Day? Sponsor a team with a $500 tax-deductible donation, form a team of volunteers, provide breakfast or lunch for 25 volunteers, or donate MS Service Day supplies. I have MS. How can my household get selected for MS Service Day? To be eligible for this opportunity your household must have enough work to keep a team of 5 volunteers busy for 5 hours and your household must

6

have a member affected by MS. To submit your household for consideration submit a letter or email to the National Multiple Sclerosis Society stating why your household could benefit from this opportunity. • Submissions are due by April 11, 2011 • Include your contact information: name, address, phone number and email • Mail entry to MS Service Day, National MS Society, 1650 South Avenue, Suite 100, Rochester, New York 14620 or email entry to Dee.Mascari@NMSS.org Please list specific indoor and outdoor tasks, including painting, light and heavy cleaning, yard work, gardening, organizing and minor repairs, that the volunteers will complete if your household is chosen. Households will be selected by committee and notified by May 11, 2011. Please contact Dee Mascari at 1.800.344.4867, press option #2, with questions and for further information on how to get involved.

JOIN THE MOVEMENT: nationalMSsociety.org


PROGRAMS

2010 MS Service Day Sponsors MS Service Day can only happen with the support of our community. Following are a list of sponsors that helped make last year’s Service day a great success: Buffalo Bills Alumni Foundation Team Sponsors: Kiwanis Club of Buffalo, Franklin & Young, Inc. Tactair Fluid Controls Zagieboylo-Gaudette Family Breakfast Sponsors/Donations: Kiwanis Club of Newark, Panera Bread Buffalo, Webster Women’s Club Lunch Sponsors/Donations: Bonanza’s Williamsville, Carbone’s Pizza Rochester,

Cariglio’s Pizza Rochester, Guida’s Pizza Honeoye Falls & Penfield, Joanne McNerney, Mark’s Pizza Walworth, Mustachio’s Pizza Buffalo, Prima Pizza Buffalo, Sgt. Pepperoni’s Depew, Subway Honeoye Supply Sponsors/Donations: Arthur’s Hardware True Value, Home Depot, Rochester Area Administrators of Volunteer Services Members, Raymond Kuntz, Valu Home Center, Buffalo & Williamsville

If you would like to support MS Service Day 2011 through a sponsorship or donation please contact Michelle Kraft at 1.800.344.4867, press option #2, or Michelle.Kraft@nmss.org. TOLL FREE NUMBER 1 800 344 4867

7


Programs at a Glance PROGRAMS

Bridget Martin uses the drum and bells to “harmonize her mind, body and spirit” during a nine-week creative arts therapy series held at the Pieters Family Life Center in Henrietta, NY. The series included music and dance therapies and the culinary arts with healthy eating. This wellness program was sponsored by the Rochester Area Community Foundation. The Independent Living Center of the Hudson Valley celebrated its grand opening on November 18 at their new location at 15-17 3rd St, Troy, NY. On hand to commemorate this occasion were Mayor Harry Tutunjian, Senator Roy McDonald and Emilie Higgins, Advocacy & Program Coordinator from the Chapter. The Independent Living Center is a leader in promoting selfdetermination, economic freedom and full participation by people with disabilities in all aspects of community life. The Center provides a wide variety of services including living and employment skills, employment support, housing information, advocacy and peer counseling. The Center will also be home to the Troy based “Young Persons with MS” self help

8

group. The group will meet once a month. For more information call 1800 FIGHT MS. Over 30 holiday food deliveries were made to individuals and families in need this season through the generosity of the many donors listed below and volunteers who gave of their time during this busy season. Thank you to our food drive sponsors - ER Associates, Hegedorn’s Food Market, Heremma’s Food Market, McQuaid Jesuit High School, Cohber Press Inc., and Lowe’s. Thank you to our family/individual sponsors: Lion’s Club of Chili, Tom and Carol Ireland, and McQuaid Jesuit High School.

Looking for someone to talk to? You may be interested in the Peer Support Program If you are in need of a few words of encouragement or someone to express your thoughts and feelings to, you may benefit from the Peer Support Program. Our volunteers are trained individuals who have MS or are affected by MS. We can match you with someone that shares your interests and/or background. Volunteers do not take the place of professional help, but can help a person find ways of dealing with their feelings and coping with the problems that MS is presenting in a confidential, one-to-one environment via telephone. If you would like to participate in the program or are interested in becoming a peer support volunteer, please call 1-800-FIGHT.MS (1-800-344-4867).

JOIN THE MOVEMENT: nationalMSsociety.org


Family Fun Weekend

O

T

he annual Women’s Retreat Weekend will be held this Spring in the Syracuse area. This weekend retreat will include presentations and discussions on a variety of topics including emotional health, selfesteem, relationships, intimacy, symptom management and wellness. The weekend will be filled with educational seminars, wellness activities, and of course, plenty of time for relaxation! To learn more, please contact 1.800.344.4867. We look forward to seeing you there!

PROGRAMS

n November 20-21 many individuals and families enjoyed a fun filled weekend at Camp Stella Maris in Lakeville, NY. Saturday was filled with many activity choices from crafts to euchre and entertainment by the Society of American Magicians, Rochester Assembly #47. Sunday morning we enjoyed a delicious brunch provided by the Webster Women’s Club before heading home. Thank you to the Dorothea Haus Ross Foundation and all of the volunteers, local merchants and clubs for their generosity in making this weekend so special. Everyone enjoyed the pie eating contest. The title was taken away from our CEO Stephanie Mincer and the new champ is Penny Walton. While the adults participated in a Euchre tournament and scrabble games, the kids were kept busy with an afternoon matinee.

Spring Program Highlights

Hudson Valley Symposium a Success

N

early 100 people attended the Upstate New York Chapter’s 3rd Annual Hudson Valley Multiple Sclerosis Symposium, in Fishkill, NY on November 13. Attendees heard updates about research and new treatments available and also had the opportunity to network with others. Speakers included Dr. Keith Edwards from the MS Center of Northeastern NY, Judi Bachrach, co-author of the MS Recovery Diet book, and motivational speaker Sheila Pearl, who inspired the audience. Educational sessions included topics on Understanding Stress, Driving Independently Despite the Diagnosis, and Caregiver Support. It was a day of education, inspiration, support and awareness for MS. The event was made possibly by sponsorships from Bayer, Biogen Idec., Novartis, and Teva Neuroscience.

TOLL FREE NUMBER 1 800 344 4867

9


WAYS TO GIVE crEATE A fuNDrAISEr TO rEMEMbEr Did you know there are literally thousands of ways you can help? People who want to contribute to the mission to end MS are invited to dream up and produce original events that raise money for research and care. Every year, all over the country, volunteers organize and host golf, billiards and bowling tournaments, auctions and raffles, dinners, concerts, rummage sales, wine tastings, barbecues, motorcycle fun rides, skiing days and dances. Other events include a trap and skeet fun shoot, a bratwurst and bake sale, a boat show and a car show. A sailing party in Minnesota and the 7th Annual Bell Family Rabbit Hunt in Wisconsin each raised thousands of dollars. Holiday themes are also popular, such as Easter egg hunts or Halloween parties with a pay-

10

to-enter costume contest. The types of benefits to create are limited only by the imagination. “The idea is to turn someone’s passion into a fundraiser,” said Betty Ross, the Society’s associate vice president for Campaign Development. These events may raise anything from a few hundred to tens of thousands of dollars. There’s no minimum required and certainly no maximum, Ross said. And you don’t even have to create a brand-new event, she added. You can add a fundraising element to pretty much any existing occasion. How much time it takes to prepare depends on how elaborate the plans are. They can be as simple as asking friends to pay a few dollars at the door to attend a private party. On the other hand, a large-scale gala might take four to six months, or even longer, to plan. “We have a lot of cool Society events, but people have their own interests,” said Ross. “Community events reflect how you want to be involved.” Have a great idea? Call us and ask for the Community Event Organizer Guidelines and the Community Event Information Form, or enter as a search term at nationalMSsociety.org.

JOIN THE MOVEMENT: nationalMSsociety.org


Volunteer Events Support National MS Society

Why do you have this golf tournament? We have an ex-business partner and close friend who has been living with MS for the past 12 years. Due to the progression of his MS, he is no longer able to work. This is something we can do to show him how much he is valued and how much we support him. Who supports you in putting on this golf tournament? One advantage we have as businessmen is that we can reach out to our existing customer base, suppliers and of course, our friends and family. Many of them have come through with sponsorships from their businesses and bringing foursomes to play. We charge $440 per foursome and typically have between 90100 golfers.

What did you learn while planning this event? We learned that the more fun you make an event; the more willing people are to participate. We offer food and great contest awards for lowest score, longest drive and closest to the pin for men and women. Use your network and don’t be afraid to ask people for support. Start early and once you get over that first year of planning, making it an annual event is easier and you will find that people will support you year after year! The National MS Society thanks the Hamels and their supporters for their dedication to the fight against MS! Thank you for joining the movement!

DEVELOPMENT

T

he National MS Society will spotlight a volunteer driven event holder in the MS Connection. These volunteers have a passion for helping to create a world free of MS. We hope that everyone can learn from their experiences and be inspired to get involved and do something about MS NOW! Mike Hamel of Hamel Realty of Albany, NY and Bill Hamel of HMA Contracting and their partners have been holding a golf tournament to benefit the National MS Society Upstate New York Chapter since 2007. Since that time they have raised an amazing $30,000. In 2010 alone, they raised an incredible $12,500. Mike Hamel answers some of the questions you might have when thinking of organizing your own event to benefit the National MS Society Upstate New York Chapter.

Gala in Albany to Support MS The Upstate New York Chapter and the MS Resource of the Tristate Area are having a Gala to support and further multiple sclerosis education and research on Saturday, March 26, 2011 at Wolfert’s Roost Country Club in Albany. The night will include gourmet cuisine with wine pairing, a silent auction and dancing and entertainment by New York Players Jazz Quartet For more information or to purchase tickets contact Stephanie Bradshaw at (518) 4640850 or Vineetha Kamath at (518) 785-1000 ext 104 or visit at www.msupstateny.org

TOLL FREE NUMBER 1 800 344 4867

11


DEVELOPMENT

Save the Date! SAVE THE DATE for “Laugh in the Face of MS” WALK MS 2011 Walk MS is rallying point of the MS Movement. Comedy Show Form a team and come join the community of Wise Guys Comedy Club Syracuse, NY Thursday, February 24, 2011 at 7 pm Ticket price - $20 per person

Bring your friends and have a great night on the town all while helping in the fight against MS 50/50 raffle, Silent Auction and a lot of laughs to support MS! *For more information visit www.msupstateny. org or call Kaylea Nixon at 315.632.4179 or kaylea.nixon@nmss.org

people who are creating a world free of MS. 20 locations throughout Upstate New York

Sunday, May 1, 2011 Albany Batavia Buffalo Binghamton Canandaigua Corning/Elmira/Bath Greece Ithaca Jamestown Lake Taghkanic

Lockport Mohawk Valley Oneonta Poughkeepsie Rochester Saratoga Syracuse Watertown Wellsville

Sunday, May 15, 2011 Fredonia/ Dunkirk

Walk MS Registration is open now! Visit www.msupstateny.org, call 1.800.344.4867 (press option 2) or email nyrevents@nmss.org

SAVE THE DATE – 2011 MS Aware-

ness Week will be March 14-20. People all over the nation will be moving it during our sixth annual MS Awareness Week, catapulting our movement toward a world free of MS. There are so many ways for you to take action and spread the word. Let’s get planning, together!

What Will You Do To Engage, Connect, Inspire, And Raise Awareness About MS? Visit www.msupstateny.org and click

on MS Awareness Week for ideas and local programs and events.

12

Team Shooters was the number one top fundraising team in the Chapter for Walk MS 2010. They raised an amazing $21,751 with 35 members. This is the second time in three years that Shooters has reached this honor; they were the top fundraising team back in 2008. Thank you to Shooters!

JOIN THE MOVEMENT: nationalMSsociety.org


Women Against MS Luncheon in Albany

1. Keynote Speaker, Olympic Bronze Medalist figure skater, Joannie Rochette poses with Christine Sisto Mertes, NMSS Board Vice Chair and WAMS Committee Chair at Women Against MS. 2. Sydney Gross, local volunteer receives a special gift from Frank Adams Jewelers in recognition of her unique volunteer efforts. Kimberly Adams of Frank Adams Jewelers presents this special gift. 3. WAMS attendees enjoyed the networking and luncheon, not to mention the purse and accessory auction.

SAVE THE DATE: MARCH 11, 2011

Women on the Move Luncheon in Rochester

Rochester Plaza Hotel • Seventy State Street • Rochester, NY 14614 HONORING... Professional Women on the Move

Inspirational Women on the Move Maria Basil

Patricia Vazzana

Young Women on the Move

Leslie Church

Anne Collins

Luz Cruz

Leslie Virgilio

Volunteer Women on the Move Lisa Chatt

Group of Women on the Move

no photo available

Michelle Marcello

left: Rochester MS Center Nurses at URMC right: Women’s Club of Rochester

For more information or to purchase tickets contact Michelle Kraft at 1.800.344.4867, press 2, by email at Michelle.Kraft@nmss.org or visit www.msupstateny.org. TOLL FREE NUMBER 1 800 344 4867

13

DEVELOPMENT

The Women Against MS Luncheon in Albany on November 12 raised over $50,000 for programs and research and featured Joannie Rochette, Olympic Bronze Medalist figure skater. Thank you to all who helped make the luncheon a 1 2 3 great success!


LIVING WITH MS LEArN AbOuT MS— ANYTIME

who might benefit, pros, cons and potential side effects. There are more than 50 other Learn Online videos available. Transcripts (.pdf format) and podcasts (.mp3 audio format) are available for most programs RESEARCH

Correspondents who interview the MS experts not only have a professional background in broadcasting, they have MS themselves. “So what they want to know is often what other people with MS want to know,” said Julie Gibson, special projects consultant for the Society. Dr. Aaron Miller discusses Gilenya, the first FDAapproved oral therapy for MS.

For 10 years, MS Learn Online has provided educational webcasts, featuring health professionals from all over North America, accessible at nationalMSsociety.org/ mslearnonline any time, day or night. A recent feature presentation is “Getting a Good Night’s Sleep with MS,” in which Rock Heyman, MD, chief of the division of Neuroimmunology and director of the MS Center, the University of Pittsburgh, explains why people with MS seem to be more prone to sleep disorders. He has some tips for dealing with the problem. Another new presentation is on Gilenya, the first oral disease-modifying therapy to be FDA-approved. Aaron Miller, MD, professor of neurology at Mount Sinai and medical director at the Corinne Goldsmith Dickinson Center for Multiple Sclerosis in New York City, discusses Gilenya in two sessions covering how it works,

14

Sign up at nationalmssociety.org/ mslearnonline to receive an e-mail whenever a new webcast debuts.

Explore Learn Online videos online: basic facts of MS, Treatments, Symptom Management, healthy Living, Progressive MS, research, family Life and relationships, Employment and Insurance, and En Español. On the first and third Thursdays of each month, two new videos are added. An update on disease-modifying therapy is generally added once a year. In a hurry? Visit Daily Minutes. In 60 seconds you’ll get some basics on Who Gets MS, What is Myelin, What is Relapsing-Remitting MS– and more. Click on the Daily Minute link in the blue box at nationalMSsociety.org/ mslearnonline.

JOIN THE MOVEMENT: nationalMSsociety.org


NEWS VISIONS Of TEchNOLOGIcAL EquALITY The da Vinci Awards for Accessibility and Universal Design are given annually for innovations in technologies that enable equal access and opportunity for all people, including (R-TX) those with disabilities. At a gala event in September at the Henry Ford Museum in Dearborn, Mich., awards were presented for: • hands-free speech recognition. VoicePower Ultimate makes speech recognition more productive for users with limited hand function. • A mobility vehicle. The MV-1 is the firstever vehicle designed from the ground up for wheelchair users. An MV-1 in a taxi fleet, for example, would make traveling easier for many. • An accessible park. Francis Motz County Park, in Michigan. • Music for everyone. Virtual Music Instrument software allows people with limited movement to create music by manipulating onscreen blocks of color. • Tongue-operated technology. The Tongue Drive System is a wireless and wearable technology that allows people to control computers, wheelchairs, cell phones and home appliances. Proceeds from corporate sponsorships and the gala raised almost $135,000 for the Michigan Chapter of the Society. Learn more at youtube. com/davinciawards.

A 42-acre outdoor recreational area with wheelchairaccessible picnic tables, food service areas, barbeque grills and bathrooms in Michigan.

MS Awareness Week March 14-20, 2011! This is our national effort to bring about understanding of MS and the people affected by it. To get involved, go to nationalMSsociety.org/msawarenessweek and call us for events in this area.

ThE NOrTh AMErIcAN EDucATION PrOGrAM Our annual North American Education Program includes a video and book focusing on an MS topic. The current NAEP material, called Who? Why? how? — Searching for the cause of MS, includes discussions with leading medical researchers on the causes of MS and how these efforts may lead to treatments and even finding a cure. Call us for a copy.

TOLL FREE NUMBER 1 800 344 4867

15


Non-Profit Org U.S. Postage PAID Rochester, NY Permit No. 764

National Multiple Sclerosis Society Upstate New York Chapter

National Multiple Sclerosis Society 1650 South Avenue, Suite 100 Rochester, NY 14620-3901 CHANGE SERVICE REQUESTED

Upcoming Chapter Events

Location

Date

Laugh in the Face of MS: Syracuse February 24 Comedy Night Women on the Move Luncheon

Rochester

March 11

MS Awareness Week

Chapter-wide

MS Gala Walk MS

Albany 19 Locations Fredonia/Dunkirk Site

Golf Fore MS

Rochester

MS Service Day

Chapter-wide

June 11

Bike MS: Follow the Foothills

Glens Falls

July 16

Bike MS: Finger Lakes Challenge

Keuka Park

July 30-31

March 14 – 20 March 26 May 1 May 15 June 4

60th Anniversary www.msupstateny.org 60th Anniversary


Issuu converts static files into: digital portfolios, online yearbooks, online catalogs, digital photo albums and more. Sign up and create your flipbook.