®
CONNECTION
MOVING TOWARD A WORLD FREE OF MS
Winter 2014 Upstate New York Chapter
Special Volunteer Issue
Do We Have What it Takes? If We Have Volunteers!
T
he National MS Society Upstate New York
Chapter would not be successful without
the overwhelming support and hard work of
our volunteers. We regularly witness volunteers
expressing determination to further our mission
of creating a world free of MS. In the past year,
volunteers have taken it upon themselves to
visit past MS Service Day recipients, contact
local businesses and legislators, deliver
Thanksgiving baskets, request donations
for Walk MS or another event, and even plan
incredible fundraising events – all because they
want to do something about MS now!
The chapter’s Community Engagement
team has worked to enhance the volunteer
experience for current volunteers as well as
to expand our volunteer recruitment efforts.
We have increased the number of volunteers
that so graciously devote their time to our
organization, and we have also been able
to utilize individual skills and creativity in
furthering the mission.
We always strive to recognize volunteers
for the work they do, so this edition of the MS
Connection highlights volunteerism across
the Upstate New York Chapter. Each volunteer
provides unique qualities and skills that allow
us to broaden our horizons on how to achieve
a world free of MS. We are thankful to have a
wide variety of talented volunteers that work
to help individuals affected by MS.
We have what it takes to do something
about MS because we have volunteers who are
partnering with us in the movement against
MS. The way we see it, the more volunteers
who join the movement, the more successful
we’ll be! So, if there’s a way you would like
to be involved, please contact us today by
calling 1-800-344-4867 (option 2), or emailing
ashley.greenman@nmss.org.
INSIDE This Issue
Volunteer Awards at
Annual Meeting
Page 4
Volunteer Spotlight
Page 7
MS Service Day
Success
Page 9
Monster Scramble, a Hit
Page 16
®
Upstate New York Chapter
MSupstateny.org
nationalMSsociety.org
email: michelle.prue@nmss.org
Chapter Offices
Albany Office
421 New Karner Road, Suite 6
Albany, NY 12205-3838
Buffalo Office
4245 Union Road, Suite 108
Buffalo, NY 14225
Rochester Office
1650 South Avenue, Suite 100
Rochester, NY 14620-3901
2014 Chapter Board Members
Officers
Karen L. Waldron...................................................Chair
Christine Sisto Mertes.................................Vice Chair
Pamela W. Salisbury, MSN, NP-C.............Vice Chair
Mitchell Pawluk, Esq....................................Secretary
Charles T. Cleary............................................ Treasurer
Directors
Kathy A. Birk, MD
Mark E. Boucher
Anthony M. Cortina
Keith Edwards, MD
Nancy T. Holtby
Bryan Kenny, CPA
Jennifer McKenzie
Richard J. Mengel, CPA
Thomas D. Muller
Susan Radzyminski
Julie Ann Short
Tracey L. Wardwell
Clinics/Health Centers
Visit our website for a list of National MS Society
affiliated clinics.
Syracuse Office
P.O. Box 2173
Syracuse, NY 13220
All offices can be reached by calling
1-800-344-4867 (1-800-FIGHT-MS)
Executive Management Team
Stephanie Kunes-Mincer, LMSW
President and CEO
Barbara J. Bennett, CPA - Vice President, Finance
Valerie King Hoak - Vice President,
Chapter Resource Development
Shari Mazzella - Director, Programs & Services
2
JOIN THE MOVEMENT: nationalMSsociety.org
Special Volunteer Issue
Chapter
Letter from the President
Stephanie Kunes-Mincer, LMSW
E
ach new year is an opportunity to reflect on moving forward. As I reflect on
moving toward a world free
of MS, I am convinced that
volunteers are a cornerstone
in the work of the chapter.
Two years ago when we creStephanie
ated the volunteer engageKunes-Mincer
ment program, I never imagined the impact this program would have on the
chapter! We have connected with so many people
who want to do something about MS. The time
and talent our volunteers give to so many different
areas including programs and services, data management, and fundraising is invaluable.
This year, I am committed to engaging folks in
our community who may be interested in becoming leadership volunteers by joining our board of
Chapter Mourns Loss
of a Friend
T
he chapter is sad to note
the loss of a long-time
friend and board member, Jim Smith, who passed
away on December 4, 2013
in Rochester, NY. Jim was an
integral leader of the governance committee and the
Jim Smith
MS Achievement Center professional advisory committee. He was a wonderful volunteer who was very
passionate about our mission, and he will be sorely
missed.
Special Volunteer Issue
NEWS
directors and helping move the chapter forward.
Leadership volunteers work to “open doors” for
the staff to create connections that can increase
our collaborative relationships as well as meet our
fundraising goals. Leadership volunteers are not
only important at the chapter level but also at the
national level where their involvement is always
needed to help the Society as a whole reach goals
that will bring us closer to a world free of MS.
Thank you to all the volunteers who help us
move forward. Whether you are volunteering in
the office with day-to-day tasks, contributing to a
task force, fundraising as part of a chapter event,
or furthering our mission as part of the board of
directors, you are pivotal as we move forward to
do something about MS now! If you have an idea
of how you might like to be involved as part of our
volunteer force, please contact us to get involved
today.
DID YOU
KNOW?
Almost every National MS
Society program in the
Northeast is available to
anyone affected by MS.
To learn about programs
available to you, visit
MSupstateny.org and select
“Events & Programs in the
Northeast” from the left
navigation menu.
TOLL FREE NUMBER 1 800 344 4867
3
NEWS
Chapter’s Annual Meeting
Acknowledges Leaders in the
Stephanie Kunes-Mincer
Honored with ATHENA Award MSheMovement
National MS Society Upstate New York ChapChapter
S
tephanie Kunes-Mincer,
President and CEO of
the National MS Society
Upstate New York Chapter, was the recipient of
the 2013 Ontario County
ATHENA Award presented
by the Canandaigua Area
Chamber of Commerce
Stephanie Kunesand Professional Women
Mincer Photo credit:
of the Finger Lakes. The
Melody Burri/
Messenger Post Media prestigious ATHENA Award
celebrates women in leadership. Stephanie was recognized for her professional
accomplishments, community service, and empowerment of other women to help them reach their
full potential. Stephanie says her inspiration as a
leader comes from the individuals she works with
each day at the National MS Society.
Bout to Benefit the Chapter
T
he Queen City Roller Girls
(QCRG) will host a bout to
benefit the National MS Society Upstate New York Chapter on March 15. A portion of
the proceeds from this bout supports the annual MS
WHIP (Women’s Health Information Program) in Erie
County. The QCRG have been long time supporters
of the chapter. The March 15 bout will take place at
the Rainbow Roller Rink at 101 North Oliver Street in
North Tonawanda at 6:30 p.m. Tickets are available
at www.qcrg.net.
4
T
ter presented seven awards to volunteers in the
Central New York area at the 2013 Annual Meeting on
October 17. Immediate Past Board Chair Tom Muller
announced Chair-elect Karen Waldron. President
and CEO Stephanie Kunes-Mincer shared highlights
from the year, and Keith Edwards, MD, presented
current MS research.
The following people or groups received an
award at the Annual Meeting:
Program Volunteer of the Year
Robert Fluck was named one
of the Program Volunteers of
the Year for his inspiring enthusiasm. Robert currently
takes calls with MS friends, a
peer telephone support program, and he has been the
first volunteer to sign up for
Robert Fluck
MS Service Day for two years
in a row.
Marlene Harvey was
also named Program Volunteer of the Year for her ongoing commitment to raising awareness. She began
volunteering with the chapter 20 years ago. Marlene
Marlene Harvey
believes: “Once we educate
ourselves, we take the fear out of something. We
move forward. It’s not just about us; it’s bigger than
us, that’s the world free of MS. Not just my block, not
just my neighborhood, it’s collective.”
continued on next page
JOIN THE MOVEMENT: nationalMSsociety.org
Special Volunteer Issue
Special Event Volunteer of the Year
This award was given
to a vital duo that has
been described as “the
backbone of the movement in Watertown, NY.”
Ron and Terry Nichols
became active in the
chapter in 2001, just
Ron and Terry Nichols
one year after their son
was diagnosed with MS. The couple chairs Walk MS:
Watertown, and they continue to work untiringly to
ensure the event’s success.
Corporate Supporter of the Year
NYCM Insurance was
recognized for the
company’s dedication to championing the MS cause
through the workplace. Kathleen DenNYCM Insurance
nin and her team
participate in two Walk MS locations, and they even
recruit participants outside of their workplace. The
company continues to be $5,000 Walk MS sponsors.
Legion of Courage Award
The Legion of Courage Award
is given to someone with MS
who consistently demonstrates extraordinary courage
and unparalleled commitment to helping others who
live with MS. Patti Andela is
the recipient of this award
Patti Andela
because she never tires of
supporting the cause, raising money, and sharing her
story to inspire others to join the movement. Patti is a
team captain for her Walk MS team: the MS Fight Club.
Special Volunteer Issue
Chapter
NEWS
DIY Fundraising Champion of the Year
Sam’s Club in Watertown, NY is innovative,
creative, and passionate about supporting
the movement in many
ways. Not only do they
work to integrate their
Sam’s Club
fundraising into day-today activities, but they also express their commitment to the cause by seeking opportunities to volunteer their time.
Norman Cohn Hope Award
The Norman Cohn Hope
Award is presented to a
volunteer who epitomizes
Norman Cohn’s vision for
voluntary civic action and
maintains a strong hope for
the future. Brenda Irving has
Brenda Irving
been described as a “rock to
rely upon” which makes her deserving of this volunteer award. Brenda sees her diagnosis as a “blessing in
disguise.” She exhibits her hope for the future when
she says: “I believe we can and do make a difference
with each step we take. Each moment, that step may
be challenged, but in the end, we are stronger from
having the challenge.” Brenda has been involved with
the National MS Society for 18 years, four of which
have been with the Upstate New York Chapter. She is
a self-help group leader in Oswego and Syracuse, an
MS Ambassador, a Walk MS task force chairperson for
Syracuse, and a DIY Fundraising event planner.
We would like to congratulate all of our award
winners for their hard work and dedication. Thank
you to everyone who volunteers to help create a
world free of MS.
TOLL FREE NUMBER 1 800 344 4867
5
Chapter
NEWS
New Partnership in MS Healthcare
T
he National MS Society Upstate New York Chapter
is pleased to announce a new partnership with a
Rochester-based clinical psychologist and a neurologist. Nancy Cooper, PhD, and Michael Dunn, MD,
have been officially recognized through the Society’s
Partners in MS Care program. This formal recognition
honors their commitment to providing exceptional
MS care and a continuing partnership with the Society to address the challenges of multiple sclerosis.
Partners in MS Care is a National MS Society program that recognizes and supports quality MS care.
The Society believes that people living with MS receive optimal care and support when strong collaborative relationships exist between healthcare professionals and the Society. To become a Partner in MS
Care, the provider must have MS experience, demonstrated MS knowledge, and involvement in the MS
community and in National MS Society activities.
“We are so proud to partner with Dr. Cooper and
Dr. Dunn to enhance care for the people who live
with MS in the Greater Rochester area,” said Stephanie Kunes-Mincer, President and CEO of the Upstate
New York Chapter. “In earning this recognition, both
providers have demonstrated extraordinary leadership in MS care, making a tremendous impact on
people affected by MS in our community.”
Dr. Cooper is a Clinical Psychologist at the Private Practice Office
of Drs. Cooper and Lineham.
Dr. Cooper has several years
of experience with MS, including five years as the Director of
Programs with the Upstate New
York Chapter.
Dr. Dunn is a Neurologist with
the Greater Rochester Neurological Associates, P.C. and has been
providing quality neurological
care to individuals living with
multiple sclerosis since 1984.
VOLUNTEERING
Meet a Board Member - Tracey Wardwell
W
e would like to welcome our newest board
member, Tracey Wardwell, who joined the
board in October 2013. Tracey is the Branch Manager
at the Hoosick Falls KeyBank, and she has become an
active and passionate volunteer since her daughter’s
MS diagnosis at the age of 12 in February 2013. Tracey is currently on the government relations committee. She is in the process of creating an annual Moms
Against MS event where mothers can spend the day
with their children doing fun activities while rais-
6
JOIN THE MOVEMENT: nationalMSsociety.org
ing awareness and funds for
the MS cause. Tracey lives in
Greenwich with her husband
Ben and her two children Carissa and Garrett.
Board member, Tracey
Wardwell, and her daughter
Carissa at WAMS. Photo credit:
Joan Heffler
Special Volunteer Issue
Volunteer Spotlight
T
he volunteer spotlight shines on Jeremy Tyler of
Orchard Park for his tireless dedication to doing
something about MS. In 2013, Jeremy participated
in Walk MS, rode in and became a task force member for Bike MS: Southtowns Shuffle, led a team for
MS Service Day, and managed a rest stop for Monster Scramble. Jeremy attributes his motivation to
volunteer to his fiancée, Joanne Schiffhauer, who
lives with MS. “Knowing how strong of a person she
is and watching what she went through was more
than enough reason for me to want to volunteer,”
explained Jeremy. “Volunteering is a way to be rewarded in ways money can’t express: walking away
from a house that had fallen under disrepair and to
leave with it looking nice again, or seeing the smiles
on the faces of people that cross the finish line and
to know that their one-mile walk was a marathon
VOLUNTEERING
to them… those are
the rewards.” Jeremy
truly is invaluable
to the Western New
York area, and he always comes through
when needed most.
Jeremy Tyler,
volunteer, worked
hard on MS Service
Day 2013; in fact,
he works hard yearround as he volunteers
in a diversity of roles.
Chapter Volunteer Named as Embrace the Difference® STAR
A
my Aeckerle was named the Embrace the Difference® STAR for December 2013. This award
is presented by Robyn Zimmer, designer of the Embrace the Difference® symbol which serves as a reminder that we are all connected, no matter what
differences we may have. Each month, a STAR is
named for his or her efforts at brightening the lives
of others. Amy is a passionate volunteer with the
National MS Society Upstate New York Chapter. Seven years ago, she formed a Walk MS team called the
Wacky Walkers, which has since raised thousands of
dollars toward nationwide MS research, programs,
and local support services. More recently, she organized the trick-or-treat stroll as part of the chapter’s
Monster Scramble 5K/10K fundraiser. Amy is known
for her energy, dedication, and infectious smile,
Special Volunteer Issue
with an attitude that constantly inspires others. She
is devoted to raising funds for multiple sclerosis research and services. As a token of appreciation, Amy
has received an Embrace the Difference® pendant.
The chapter recognized Amy in 2012 as an Inspirational Person On the Move at the annual On the
Move Luncheon.
(L-R) Amy Aeckerle is
truly a STAR, pictured
with Robyn Zimmer of
Embrace the Difference.
TOLL FREE NUMBER 1 800 344 4867
7
VOLUNTEERING
Volunteers Creatively Raise Funds
(L-R) Megan Vaughan, Upstate New York Chapter Programs
and Services Manager, accepts a $300 donation from Terrie
and John Bednarczyk who have been fundraising for the
chapter from their art studio, The Bee Hive, in Lewiston.
I
f you have photos from a DIY Fundraising event
that you would like to submit, or if you are interested in organizing your own event, please contact
The Upstate New York Chapter would like to thank Tony
Balassone, owner of Calico Restaurant and Patisserie in
Rhinebeck, for his efforts to create a world free of MS by
creating his own golf marathon. Tony walked over 20 miles,
played 90 holes of golf, and made 19 birdies while collecting
pledges per hole in honor of his uncle who lived with MS.
Ashley at 1-800-344-4867 (press 2) or via email at
Ashley.Greenman@nmss.org.
Volunteer, Your Way
Do you want to get involved in the MS movement, but aren’t quite sure how? DoIt-Yourself fundraising is a way for individuals who are passionate about creating
a world free of MS to show their creativity and help raise critical money for MS
research, programs, and services. You can plan any event – big or small: a bake
sale, an auction, a tournament, a fun run or anything else you can imagine! We
have tools online to help, just visit MSupstateny.org and click on “DIY Fundraising”.
If you have any questions about DIY Fundraising, please contact Ashley Greenman
at Ashley.Greenman@nmss.org or by calling 1-800-344-4867 (press # 2).
And, as an expanded version of DIY
Fundraising, we have launched finishMS.org –
a website tailored entirely for endurance sports
enthusiasts to raise awareness and funds while
participating in any third-party endurance event. Swim, run, paddle, snowshoe, or participate in any
distance event to show your commitment to finish MS. Visit finishMS.org for training resources and to
register your distance event today.
8
JOIN THE MOVEMENT: nationalMSsociety.org
Special Volunteer Issue
Chapter
What a Difference a Day Makes:
Fourth Annual MS Service Day
O
n October 5, 2013 the National MS Society Upstate New York Chapter held its fourth annual
MS Service Day. More than 110 volunteers went to
the homes of individuals who have MS to assist with
household chores that may be difficult to complete
due to the symptoms of MS.
Volunteers helped with tasks such as mopping,
vacuuming, steam cleaning, yard work, and some
skilled volunteers were able to make home repairs
such as fixing a door or repairing drywall.
While it is a lot of work, volunteers thoroughly
enjoy MS Service Day. “You get more than you give,”
said Bob Besigel, volunteer and task force member.
“The people you meet, the volunteers you work
with, the friends you make over the years, it’s just a
great feeling.”
Sometimes, lasting relationships are created
through MS Service Day. One team has been back to
PROGRAMS
help with other chores since October 5, and another
team received an invitation to the homeowner’s annual holiday party!
Our volunteers were able to successfully serve at
19 houses and make a difference in the lives of individuals with MS. With the help of these volunteers,
our sponsors, and the generous donations received,
we were able to prove what a difference a day makes.
Special thanks to Modica and Associates for providing volunteer t-shirts this year.
While Service Day was an incredible success, we
know that we can do more! Please consider getting
involved in 2014. If you are interested in volunteering, receiving assistance from a volunteer team,
or supporting this important program in any way,
please contact us at 1-800-344-4867 (option 2), or
email nyrMSserviceday@nmss.org.
3. Volunteer
Cynthia
Witherspoon
of Modica and
Associates poses
for a quick photo
with Donna
Albert before
spreading mulch
in the gardens.
1
3
2
Special Volunteer Issue
1. Volunteer Elizabeth Grew gets started on a gardening
project for MS Service Day. 2. (L-R) Volunteers Anthony
Lenzi, Michael Guay, Elizabeth Hall, Jeff DeCory,
Elizabeth Grew from SUNY Brockport Accounting Club,
and Bike MS Manager Alyssa Shoup work together for a
successful MS Service Day.
TOLL FREE NUMBER 1 800 344 4867
9
Chapter
PROGRAMS
Job-Seeking Resources
Join the Job Club Support Group
Looking for a job and frustrated? Finding it hard to stay motivated? Join us for a
monthly teleconference job club where you can share with others living with MS about
job search efforts and learn about resources and general support. The group will run
from 2:30-3:30 p.m. on the following dates:
February 27
March 27
April 17
May 15
June 26
July 31
Space is limited so register early. To register, e-mail
EmploymentQuestions@nmss.org or call 212-453-3218.
Got Job Questions?
Do you have an employment question you would like answered? Are you
curious about workplace disclosure or social security benefits? Do you think you need a reasonable accommodation? Are you thinking about returning to work?
If you answered “yes” to any of these questions, feel free to pose your questions directly to an Employment Specialist by emailing EmploymentQuestions@nmss.org. You will receive a response within 48 hours.
Multiple Sclerosis Symposium
Hudson Valley Symposium
The Sixth Annual Hudson Valley Multiple Sclerosis Symposium took place this year on November 8 at the Villa Borghese in Wappingers Falls, NY.
Nearly 80 attendees learned about MS, advocacy,
and community resources. Familiar faces and new
attendees alike heard from Lori Rhodes, Senior Program Manager of the National MS Society Upstate
New York Chapter; Dr. Syed Nasir, a neurologist
from Newburgh, NY; and Dr. Daniel Katz of Premiere
Medical Group in Poughkeepsie, who shared the latest information on urology and MS. Guests enjoyed
delicious food, companionship, and an inspirational
presentation from Frank Mento. Other presenters
included Lotus Results, Driver Rehabilitation of the
Hudson Valley, and United Way 211. Participants’
10
comments were very positive and one person noted
that the program “couldn’t [be] better for a one-day
program.” The Society thanks Biogen Idec., Novartis
Pharmaceuticals, Genzyme, Questcor, and TEVA for
sponsoring the symposium.
Molly Van Ullen, Campaign Manager for the National Multiple Sclerosis Society Upstate New York Chapter, speaks to
the audience about steps to successful fundraising.
JOIN THE MOVEMENT: nationalMSsociety.org
Special Volunteer Issue
Albany Symposium
The recent Albany MS Symposium featured speaker David Hojnacki, MD, who presented “Time is Brain”
to a crowd of 120 individuals with MS, family members, and healthcare professionals at the 11th Annual
Multiple Sclerosis Symposium on October 21, at the
Albany Marriott Hotel. Dr. Hojnacki, Chief of Neurology at Buffalo General Hospital, addressed the issue
of the “utility of MRI in evaluation of memory impairment in multiple sclerosis.” He touched on the need
to develop new testing techniques to assess brain wiring and volume.
Peter Arnett, PhD, a psychology professor and
Director of Clinical Training at Penn State University,
presented on “Cognitive Function in Multiple Sclerosis.” He discussed primary and secondary influences,
especially anxiety, depression, and fatigue in people
with MS – factors which may be associated with cognitive dysfunction.
During the afternoon, an Ask the Experts panel
included Peter Arnett, PhD, W. Morris Cohen, PhD,
Elaine Hill, OTR-L, and Tara Penesso, LCSW-R. Cohen,
Hill, and Penesso are all affiliated with Center Health
Care and the Center for Disability Services, which offers many services to people with MS including primary care, women’s health care, physiatry, audiology,
optometry, podiatry and more. The MS Symposium
was presented by the Center for Disability Services in
conjunction with the Upstate New York Chapter.
Upcoming Support Groups
in Western New York
Lewiston: The Lewiston MS Support Group will
begin meeting again in March. Please contact Megan Vaughan at 716-634-2573 ext. 70502 or megan.
vaughan@nmss.org for more details.
Erie & Niagara Counties: We’re hoping to expand our Young People with MS group in Erie and
Niagara counties. If you are interested in meeting
Special Volunteer Issue
Chapter
PROGRAMS
other people with MS in their 20s and 30s, please
contact Megan Vaughan at 716-634-2573 ext. 70502
or megan.vaughan@nmss.org for more information
about upcoming activities.
Cheektowaga: The Caregiver Support Group
is always looking for more members. Join us at the
National MS Society office at 4245 Union Road, Suite
108 in Cheektowaga on the fourth Monday of the
month at 7:00 p.m. We look forward to seeing you
there.
Money Matters with MS:
Present and Future Issues
A
n MS diagnosis often leads to many questions
about a financially secure future. On Wednesday, April 2 at 6:00 p.m. at the Julia Boyer Reinstein
Library, 1030 Losson Rd, Cheektowaga, presenters
Bruce Supernault, ChFC, CCPS, Special Care Planner;
and Bruce Goldstein, JD, Special Needs Attorney, will
discuss:
• Basic budgeting – bill paying strategies and credit
card management
• Savings vehicles – pros and cons of various types
• Employee benefits – medical insurance plans, disability coverage, and life insurance
• Legal Planning – wills, special needs trusts, and
living trusts
• Retirement planning – adequacy and tax effectiveness
• Estate planning – maximize inheritances and minimize taxes
Call 1-800-344-4867 or email megan.vaughan@
nmss.org by March 28 to register for this program.
TOLL FREE NUMBER 1 800 344 4867
11
Chapter
PROGRAMS
Making Treatment & Lifestyle Decisions
J
oin us on Wednesday, March 5 at 6:00 p.m. for
a showing of the North American Education
Program video “Making Treatment & Lifestyle
Decisions: Thinking About Benefits & Risks.” The
forty minute video features MS specialists and
members exploring the factors people must consider when making treatment and lifestyle decisions, including when to begin treatment, the
role information overload can play in decisionmaking, and how to weigh the benefits and risks
of a treatment or lifestyle decision. Attendees will
also receive a book highlighting information in
the video and other available resources. Following the video there will be an open discussion.
This program will take place at the National MS
Society Upstate New York Chapter Buffalo Office:
4245 Union Road, Suite 108, Cheektowaga. To
register, please call 1-800-344-4867 or email megan.vaughan@nmss.org by February 28.
NEW! Online Book Club
Would you like to join us for a chapter-wide virtual book club from the comfort of your
home? Participate at your leisure: you choose when and how you want to contribute to the club!
This group is moderated by a volunteer living with MS who is an avid reader and lover of
books. A staff member will moderate the club as well. We will be reading all kinds of books and
discussing them online. Help us choose the first book we read together. Any books suggested
must be available in either large print, audio, or e-reader versions. This is a private, online group,
just for our chapter.
It’s easy to get started:
• Go to www.goodreads.com and create an account with your personal privacy settings.
• At the top of the main page, click on “explore” from the list. Select “groups” then search
for “Orange Zest for Books.”
• Click on our group name, and under the picture click “join group.”
For more information or help getting started, contact Deb Houck at deb.houck@nmss.org or call
1-800-344-4867, press 2.
12
JOIN THE MOVEMENT: nationalMSsociety.org
Special Volunteer Issue
RESEARCH
Opportunities to Participate in MS Research
Buffalo: Researchers at the University at Buffalo are looking at ways to improve respiratory
function and exercise capacity in people with
MS. The study would test the subject’s respiratory
muscle function, and then see how the subject responds to a six-week exercise program designed
to improve strength and endurance of respiratory
muscles and reduce fatigue. The testing will be on
five days over nine weeks at UB, and the exercise
program will be three times a week for six weeks;
two of the sessions at home and one at UB. Compensation is available. For more information, contact Dr. Nadine Fisher at 716-829-6724 or nfisher@
buffalo.edu.
DENT Neurologic Institute is evaluating a new,
investigational drug that may help reduce MS relapses. Qualified volunteers, ages 18 to 65, will be
compensated for time and travel. The institute is
conducting a second study to evaluate different
medications that treat relapsing-remitting MS,
and if you are between the ages of 18 and 65, have
been diagnosed with RRMS, or have five years or
less of total lifetime exposure to one class of Disease Modifying Therapy (DMT), you may qualify
to participate. DENT also has an upcoming Secondary Progressive MS study. For information on
these studies, call 716-250-2038 or 716-819-4117.
The Pediatric MS and Demyelinating Disorders
Center at Women and Children’s Hospital of Buffalo is currently recruiting healthy, typically developing children, ages 3 to 19, to take part in a research
study. Participants will be compensated. The study
is also looking for individuals with MS, ages 3 to 18,
who will not be compensated, but will be eligible
for a full clinic visit with an MS specialist. For more
information, call Mary Karpinski at 716-859-1792.
Special Volunteer Issue
Dr. Ralph Benedict, of the University at Buffalo,
is conducting an online longitudinal survey of individuals who have MS and are currently working.
The entire survey takes less than 15 minutes. You
will be asked to complete the survey every few
months so that any changes in your employment
status can be confidentially identified. To take the
survey, go to Thejni.org and click Online Research
Survey, and then Vocational Accommodations
and MS. If you have questions, or difficulty accessing the survey, email mscogsur@buffalo.edu.
Buffalo & Albany: Jacobs Comprehensive MS
Center for treatment and research at the UBMD
Neurology, SUNY Buffalo and the MS Center of
Northeastern New York in Latham, NY (Albany
County) will participate in a new treatment trial
for neurorecovery in relapsing-remitting and
secondary progressive MS. The treatment is designed to hopefully allow myelin to recover and
allow a functional improvement. It will be given
intravenously once every four weeks. There is a
placebo control in the study. Dr. David Hojnacki is
the principal investigator in Buffalo and Dr. Keith
Edwards is the principal investigator in the Albany
area. Those who may be considered for the trial
are individuals with either RRMS or SPMS with a
relapse in the prior year, ages 18 to 58, male or
female, who have a disability from MS but can still
walk 100 yards with or without assistance. More
details are available at clinicaltrials.gov. Anyone
interested in participating should call Kara Patrick at the Jacobs Comprehensive MS Center at
716-859-7510 or Judy Button at the MS Center of
Northeastern New York at 518-785-1000.
continued on next page
TOLL FREE NUMBER 1 800 344 4867
13
RESEARCH
Rochester: The Rochester MS Center is currently recruiting to gather information about the
long-term safety and effectiveness of a new drug,
SPARC’s Baclofen ER Capsules, in subjects with
spasticity due to MS. For more information, call
Eileen Scheid, RN, at 585-275-6673.
The Rochester MS Center is recruiting for a
study that will look at whether vitamin D is effective in reducing relapses and new MRI lesions in
people with MS. Study participants will receive
high-dose or low-dose vitamin D for two years.
All participants will be given glatiramer acetate
(Copaxone) for free during the study. To find out
if you are eligible to participate, call Cynthia Irish,
RN, MSCN, CCRC, at 585-275-6120.
The Rochester MS Center is currently recruiting subjects for a study that will assess the safety
of a new medication, VX15/2503, in patients with
MS. The purpose of the study is to find the highest safe dose of VX15/2503, which will be given
by intravenous infusion. Individuals need to be
between the ages of 18 and 60 and willing to undergo MRI exams. They will receive a stipend to
offset travel expenses. For more information, call
Cynthia Irish at 585-275-6120.
Novartis is sponsoring a clinical research study
at the University of Rochester MS Center to compare two doses of fingolimod with glatiramer acetate, and to evaluate the effectiveness and safety
of fingolimod for people with relapsing-remitting
MS. For more information, contact Eileen Scheid,
RN, MSN, at 585-275-6673.
MS Research:
The Progress, The Promise
Join us during the months of March and
April to hear about exciting developments
in MS research! The Upstate New York
Chapter will be hosting four separate programs in Batavia, Utica, Poughkeepsie, and
Corning. Invitation coming soon!
ADVOCACY
Affordable Care Act: Health Insurance
Marketplace Open for Business
O
ctober 1, 2013 marked the start of open
enrollment for the federal and state Health
Insurance Marketplace also known as the Exchanges. These new rights are part of the largest
reforms to the nation’s healthcare system since
the launch of Medicare and Medicaid in 1966.
The National Multiple Sclerosis Society’s Information and Resource Center (IRC) is an excellent resource for anyone who may have questions about the Exchanges and the impacts to
people living with MS. The Benefits Team at the
14
IRC helps callers with basic information about
healthcare reform and MS, as well as referrals
to the federal Marketplace and State Exchange
web portals. People with questions, including
questions about eligibility for the new exchanges, are encouraged to call the IRC at 1-800-3444867 and speak with one of our MS Navigators.
In New York State, you can also learn more
about the official health plan marketplace by
visiting https://nystateofhealth.ny.gov/ or by
calling 855.355.5777, TTY: 800.662.1220.
JOIN THE MOVEMENT: nationalMSsociety.org
Special Volunteer Issue
Volunteers Needed to Join
Government Relations
Committees
G
overnment Relations Committees (GRCs) are
volunteer committees dedicated to taking
action on matters relating to public policy. The
committees meet throughout the year to gather
information about important policy issues related
to multiple sclerosis, set the public policy state
and local agenda, obtain knowledge of political
processes, identify key political players, and build
a network to respond to public policy issues of
importance. Volunteer responsibilities include attending the Public Policy Conferences, providing
testimony at state and local hearings, meeting with
legislators, making phone calls or sending emails
or letters to legislators and executives, and representing the chapter at press conferences. The time
commitment varies during the year but is typically
a few hours per month.
In the 50-county Upstate New York Chapter,
GRCs are active in Albany, Buffalo, and Rochester.
We are working to establish GRCs in Binghamton,
Poughkeepsie, and Syracuse. Randy Stein chairs
the Albany GRC; Denise Herkey-Jarosch chairs the
Buffalo GRC; and Doug Kaleta chairs the Rochester
GRC. GRCs in all areas of the chapter are looking
for more volunteers. To learn more about advocacy, contact Advocacy and Program Manager Aaron
Ward at 518-464-0910 or aaron.ward@nmss.org.
GRC meetings in October and November focused on reviewing the 2014 Unified State Policy
Agenda. Two issues from the 2013 agenda will
remain: state partnerships to increase MS awareness and education to meet the unmet needs of
people with MS and Medicaid expansion. Since
the new health insurance marketplaces are selling
insurance coverage for 2014, the final focus area for
the Unified Agenda is state implementation of the
Special Volunteer Issue
ADVOCACY
Affordable Care Act. It is important to ensure this
new availability of health insurance sold through
exchanges will be effective coverage for people living with MS. A group is working to identify specific
issues that will ease implementation in the state.
State Action Day 2014:
Let Your Voice Be Heard
T
he New York State MS Coalition Action Network
(NYS MS CAN) is gearing up for a busy 2014
when we will again hold our annual State Action
Day in late February to visit lawmakers to discuss
our top legislative priorities. The Upstate New York
Chapter, the New York City/Southern New York
Chapter, and the Long Island Chapter work closely
together as the NYS MS CAN to educate lawmakers
about the needs of those living with MS and how
public policy impacts their daily lives. Our goal for
2014 is to encourage as many people living with
MS, family, friends, Walk MS and Bike MS teams,
and others concerned about sound healthcare
policy to dress in orange for a group photo in Albany on State Action Day.
(L-R) New York State Senator Hugh Farley, Advocacy and
Program Manager Aaron Ward, Rochester Government
Relations Committee Chair Doug Kaleta, National MS
Society Upstate New York Chapter Director of Programs
and Services Shari Mazzella, and Albany Government
Relations Committee Member Frank Ridzi in Senator
Farley’s office on State Action Day 2013.
TOLL FREE NUMBER 1 800 344 4867
15
DEVELOPMENT
A “Scrambling” Success
C
ongratulations and thank you to all those
who helped make the first annual Monster
Scramble 5K/10K a success! Chapter-wide we
welcomed almost 1,000 runners and raised more
than $65,000. A special thank you goes out to our
sponsors: Ferguson Electric, Questcor Pharmaceuticals, Dent Neurologic,
Capital Care Medical
Group, Genentech, Realty USA, Ellis Moreland
and Ellis, Genzyme, and Acorda Therapeutics.
If you are interested in being part of the Monster Scramble task force for 2014 in the Buffalo,
Rochester, Syracuse or Albany areas, please contact Ashley Greenman at 1-800-344-4867 (press
2) or via email at ashley.greenman@nmss.org. We
hope you will join us for another successful event
in October 2014!
More than 500
runners charge
over the starting
line in Mount
Hope Cemetery
for Monster
Scramble:
Rochester.
“Butterfly” runners
rest after Monster
Scramble: Lake
George.
16
“Monsters” scrambled for candy along the one-mile stroll at
Monster Scramble: Syracuse.
Greater Niagara Galaxy Cheerleaders pose for a spooky
photo shoot at Monster Scramble: Buffalo.
Corporate Development
Committee Seeks Volunteers
MS Kills Connection. Connections Kill MS. The Upstate New York Chapter is forming a Corporate
Development Committee to further our mission
through corporate connections. Your connections
can help kill MS. We are looking for individuals who
have connections in the corporate world, and who
are willing to connect these folks to the Society to
advance our mission through corporate sponsorship, philanthropic support, Team MS and more.
The committee will meet via conference call to discuss chapter opportunities and corporate connections. If you can connect us to others interested in
creating a world free of MS, please contact Maria
Batt at 716-634-2573, ext. 70501 or Maria.Batt@
nmss.org.
JOIN THE MOVEMENT: nationalMSsociety.org
Special Volunteer Issue
DEVELOPMENT
Four Bike MS Events Offer Something for Everyone
Sign up NOW for BIKE MS 2014 and get 50% off your registration fee!
Early bird registration is open now through January 31. Register now and get HALF OFF by
using discount code EARLYBIRD. Register online at bikeMSupstateny.org,
or call 1-800-344-4867 (press 2).
Bike MS: Finger Lakes Challenge
Keuka College • July 19-20 • Keuka Park
Saturday Routes: 30, 62, 100 miles
Sunday Routes: 25 or 50 miles
Enjoy a scenic get-away ride in the heart of the
Finger Lakes. Overnight accommodations are
available at Keuka College. We have exciting new
features in 2014 including a new ‘Bike MS Zone’ for
registration, merchandise, food, beverages, and
entertainment.
Bike MS: Southtowns Shuffle
NEW! Sahlen’s Sports Park • Aug. 9 • Elma
15, 30, 67, & 100 mile routes
Join us as we ride through the beautiful
Southtowns of Buffalo—featuring beautiful
landscapes and iconic landmarks such as the
Fisher Price Factory, Ralph Wilson Stadium, Vidler’s
5 & 10—and more. Sign up for what is sure to be a
fun-filled ride!
Double up your
participation!
See page 18.
Special Volunteer Issue
Bike MS: ROC the Ride
Genesee Valley Park • Sept. 7 • Rochester
Tour the City by Bike: 25, 40, 62 & 100 mile routes
Join us for our brand new ride in Rochester!
Starting and finishing in Genesee Valley Park, there
are five ride options that will appeal to everyone!
Options include a 10-mile stop-and-go tour of
historic sites and scenic views throughout the city;
a 25-mile cruise along the Rochester waterway
paths; a 45-mile trail ride through the Genesee
River Trail, Lehigh Valley Trail, Auburn Trail and
more; and a metric century and century ride along
the beautiful lakeshore.
Bike MS: Hudson River Ramble
Birch Hill Catering • Sept. 20 • Schodack
10, 30, 62, & 100 mile routes
Join us for the third annual Bike MS Hudson River
Ramble. Great new features at this year’s ride
include an earlier dinner and entertainment all day
long. Invite your friends and families to join you in
celebrating your accomplishment!
TOLL FREE NUMBER 1 800 344 4867
17
DEVELOPMENT
DOUBLE UP your
participation in Bike MS!
On the Move Luncheon
T
ickets are available now for Rochester’s On
the Move Luncheon on March 7 at Locust
Hill Country Club. We will honor local volunteers, philanthropists, and activists who are on
the move to create a world free of MS. Tickets
for this inspiring luncheon can be reserved by
visiting our website at MSupstateny.org. Select “On the Move.”
N
ew in 2014 – raise $350+ at the first Bike MS
event of your choice and participate in a second
Bike MS event in Upstate New York and only pay the
registration fee, no additional fundraising required
(although always encouraged)!
Use promo code ‘DOUBLEUP’ when registering
for your SECOND Bike MS event. See chapter website
for details or email Alyssa.Shoup@nmss.org.
Bike MS Supporters: Jim and
Kelly Toomey’s children at Bike
MS Southtowns Shuffle 2013.
These little youngsters passed
out the finisher medals to all
of our cyclists at the finish
line. They would be ecstatic to
see you cross the finish line in
2014!
cape
cape cod,
cod, mass.:
mass.: september
september 5-7,
5-7, 2014
2014
3 days. 50 miles.
connect to end
multiple sclerosis
register now:
MSchallengewalkcapecod.org or 1.800.344.4867
Once in a while, a challenge calls that you simply must answer.
Challenge Walk MS is the perfect way to embrace a personal challenge
of spirit and strength, while making an important difference in the lives
of people living with MS.
RegisteR today & begin fundRaising
As soon as you register, you’ll have access to our online
fundraising tools, making fundraising easier and more
convenient than ever! A minimum fundraising goal of $1,500
is required, but we’ll be with you every step of the way.
18
JOIN THE MOVEMENT: nationalMSsociety.org
Special Volunteer Issue
DEVELOPMENT
Elizabeth Smart Wows Sold-Out WAMS Audience
E
lizabeth Smart’s powerful story and message
of hope and triumph over adversity is still resounding with the attendees of our eighth annual Women Against MS
(WAMS) luncheon held
November 1 in Albany.
The event was a huge
success and exceeded its
fundraising goal with an
amazing $85,000 raised
Featured special guest
at this sell-out event.
Elizabeth Smart steps up
We would like to thank
to the podium to share her Elizabeth Smart, everyamazing story. Photo Credit: one who attended, our
Joan Heffler
Honorary committee
members, planning committee members, sponsors and our emcee Benita Zhan from WNYT,
NewsChannel 13 for helping make WAMS a continued success.
The Upstate New York Chapter was pleased to honor AudioVideo Corporation with the Corporate Philanthropy award.
Audio-Video Corporation has been an enthusiastic supporter
of WAMS since its inception. Since 2006, AVC has contributed
more than $16,000 in cash and in-kind sponsorship and
served on our planning committee. Left to Right: Michele
Dowd, AVC, Stephanie Bradshaw, National MS Society,
Martha Meader, AVC and Courtney Remington, AVC. Photo
Credit: Joan Heffler
AUTOS-4-MS
Help drive MS away donate your vehicle today!
When you donate your car, truck, motorcycle,
boat or trailer to the National MS Society, you
can feel good knowing 100% of the proceeds
go directly toward benefitting people with
MS. Proceeds fund vital research into the cause,
cure and treatment of MS as well as programs
and services for people living with MS.
Your vehicle donation is tax deductible. Refer to
your tax professional for specific details.
The packed house is riveted by Elizabeth Smart’s message.
Photo Credit: Joan Heffler
Special Volunteer Issue
For answers to all your questions and to start the
donation process, please visit www.AUTOS4MS.org
or call our office at 1-877-672-8864.
TOLL FREE NUMBER 1 800 344 4867
19
FREE MATTER
FOR THE
BLIND AND
HANDICAPPED
®
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
Papercraft and Crop to Stop MS
Rochester
MS Awareness Week
Society-wide
On the Move Luncheon
Rochester
March 7
Making Treatment & Lifestyle Decisions
Cheektowaga
March 5
QCRG Bout Benefitting the Chapter
North Tonawanda
Money Matters Program
Cheektowaga
January 25
March 3-9
March 15
April 2
Visit our website, MSupstateny.org, for details on events and programs
Start your Walk MS journey today! Registration is now open for 2014!
Walk MS:
May 4, 2014
17 Locations across
Upstate NY
(Buffalo: May 3)
(N. Chatauqua: May 18)
To register, learn more, and get a
full list of Walk MS locations, visit:
walkMSupstateny.org or call
1-800-344-4867 (press 2)
Special Volunteer Issue