Recent News...
...March 12, 2012 - Get involved in MS
Awareness Week
March 12-18 is
MS Awareness Week, the perfect time to get
involved as an MS activist. It's as simple as writing a letter
or making a phone call to your legislator or
signing up to receive Action Alerts from the National MS Society.
Click here to download our brand new MS Activist Tool Kit (pdf)
for more ways you can get involved.
...January 9, 2012 - Governor Christie
signs MS Task Force Bill
Governor Christie has signed the MS Task Force bill today,
thanks to all of your efforts pushing the bill along.
Under the legislation, the task force
will develop strategies to identify and address the unmet needs
of individuals with MS in order to provide them with greater
access to various treatments and other therapeutic options. The
task force will focus on issues impacting the productivity and
independence of individuals with MS. It will also review issues
impacting emotional, social and vocational challenges of
persons with MS.
...October 31, 2011 - We're on Facebook
The New Jersey Chapter Advocacy Network (NJCAN) is now
on Facebook.
Click here to like us today. We'll keep you up to date on
every bill, vote, etc. that's important to the New Jersey MS
community and the National MS Society.
...September 19, 2011 -
New rule strengthens protections for Americans with
disabilities at rail stations
U.S. Transportation Secretary Ray LaHood
announced that individuals with disabilities will have greater
access to intercity, commuter and high-speed train travel as a
result of a new rule requiring new station platform construction
or significant renovation to enable those with disabilities to
get on and off any car on a train.
“This will help give passengers with
disabilities better access to rail travel across the country,”
said LaHood. “By putting this protection in place, passengers
with disabilities will be able to get on and off any accessible
car that is available to passengers at a new or altered station
platform.”
The U.S. Department of Transportation (DOT)
is amending its Americans with Disabilities Act (ADA)
regulations to require intercity, commuter and high-speed
passenger railroads to ensure, at new and significantly
renovated station platforms, that passengers with disabilities
can get on and off any accessible car of the train. Passenger
railroads must provide level-entry boarding at new or altered
stations in which no track passing through the station and
adjacent to platforms is shared with existing freight rail
operations.
Click here to learn more (pdf).
...May 24, 2011 - Madden Bill creating
N.J. MS task force passes in Senate, heads to Assembly
Legislation sponsored by Senator Fred Madden (D-Gloucester,
Camden) that would establish the New Jersey Multiple Sclerosis
Task Force in the Department of Health and Senior Services (DHSS)
has cleared the Senate with a 39-0 vote.
"With so much still unknown about multiple
sclerosis, those who suffer from it face constant challenges
everyday. We have a responsibility to help them meet those
challenges through whatever aid and assistance we can provide.
The Task Force is a common sense, cost free way to begin
providing that assistance," said Madden last week before
the bill passed the Senate committee vote.
The legislation now heads to the Assembly
for a vote.
...February 23, 2011 - Join us in Trenton
for New Jersey Lobby Day
MS advocates are taking over
Trenton on Monday, March 14 to:
- Learn about important
legislative issues affecting people with MS
- Get important
training on advocacy issues
- Hear from legislators
- See laws being made
at Senate and Assembly voting sessions
- Bring attention to MS
during MS Awareness Week, March 14-20
Lunch will be
provided. Limited accessible transportation will
be available from Marlton and Glassboro.
We are encouraging all
those planning on attending Lobby Day to use our
transportation or public transportation, as
parking is limited at the State House.
Register today by
contacting Ellen Mitchell at 1-800-548-4611 or
ellen.mitchell@pae.nmss.org.
...August 23, 2010 - Feeling overwhelmed
by prescription drug costs?
MS places a heavy burden not only on the finances of people
affected, but also on their quality of life. The disease's
costly therapies often force people to live from paycheck to
paycheck and make impossible choices among the things they want
and need. If this sounds familiar, Congress needs to hear from
you.
The National MS Society needs your support to
pass the
Affordable Access to Prescription Medications Act, a bill
designed to give some financial relief for people living with
MS.
This legislation would cap monthly
prescription drug costs; allow exemptions for fourth-tier
specialty drugs, require Medicare to study the impact of drug
cost-sharing and potentially lower co-payments for up to 10% of
Americans with the highest prescription costs.
Contact your
federal legislators to tell them your story and that it is
necessary to pass the Affordable Access to Prescription
Medications Act. Legislators need to realize that the
out-of-pocket expenses for fourth-tier drugs are a burden to the
hundreds of thousands of people living with MS every day.
...June 22, 2010 - New Jersey Lobby Day is
chapter's biggest ever!
The 2010 MS Lobby Day in Trenton brought together 80 MS
activists and 10 legislators for our chapter’s most successful
advocacy event ever.
The activists participated in Q&A with the legislators and
learned how activism makes a difference: the recent construction
of affordable housing in central New Jersey for people living
with MS, made possible by the NJ CAN’s advocacy efforts.
Legislators pledged to look into the copayment structure for
biologic drugs such as disease modifying therapies for MS and to
establish a statewide task force to examine other ways they can
help make life better for their constituents living with MS.
Click here to view photos from the event.
This event showed our organization’s strength in numbers, and
we’ll need even more participation to further develop these new
relationships. Click here to learn
more about becoming an MS activist.
...June 17, 2010 - New DOT rule extends
disability protections to passenger ships and boats
Secretary of Transportation Ray LaHood announced the first
federal rule to specifically provide Americans with Disabilities
Act (ADA) protections to people with disabilities who travel on
boats and ships. The action comes as the 20th anniversary of the
ADA approaches on July 26.
“This Administration is committed to protecting the rights of
passengers with disabilities in all modes of transportation,”
said Secretary LaHood. “This rule will ensure fair treatment for
people with disabilities who travel by ship or boat.”
The rule applies to two categories of vessels: vessels operated
by public entities, such as public ferry systems, and vessels
operated by private entities primarily engaged in the business
of transporting people, such as cruise ships.
The rule will ensure that vessel operators’ policies do not
discriminate against passengers with disabilities. Under the
rule, vessel operators cannot charge extra for
accessibility-related services to passengers, cannot require
passengers to furnish their own attendants and cannot deny
access to passengers based on disability. Vessel operators will
have to provide information to passengers about the
accessibility of their facilities and services and make a
knowledgeable person available to resolve accessibility
concerns.
This rule does not establish physical accessibility standards
for new construction or alteration of vessels. The Access Board,
an independent agency, is currently developing proposed
accessibility guidelines that the Department would adopt in a
subsequent rulemaking.
Department of Justice (DOJ) regulations will cover a third
category of vessels not covered by the Department of
Transportation’s (DOT) rules – those operated by private
entities not primarily engaged in the business of transporting
people, such as fishing charters and dinner cruise boats.
The new rule will become effective 120 days after it is
published. There will be a 90-day comment period concerning
three issues: whether vessel operators should be required to
allow passengers with disabilities to bring emotional support
animals on board, requirements operators must follow concerning
the use of mobility aids and the relationship of DOT and DOJ
disability rules.
...May 3, 2010 - Legislators come out to Walk MS
Walk MS 2010 drew crowds of thousands of walkers and
volunteers over the past two weekends. It also drew local
legislators to come speak. Senators and congress people came out
to let our participants know that we all need to speak up for
change and that they are always open to suggestions and concerns
from their constituents.
Left: Senator Fred Madden with National MS
Society staff member Katie Bolton at the Washington Township
Walk MS event on April 25.
Right: Senator Haines braves the fog and rain at Medford Lakes on
April 25.
...March 16, 2010 - Help continue to fund
MS research through the CDMRP
We need your help. We are asking Congress to support a
$15 million appropriation to the Congressionally Directed
Medical Research Program (CDMRP)for multiple sclerosis. This
letter to members of the Appropriations Defense Sub-Committee
asks for funding of MS research through the FY 2011 Defense
Appropriations bill. For the more than 20,000 veterans diagnosed
with MS and more than 400,000 people living with the disease
nationwide, this funding will provide the necessary resources so
researchers can explore potential environmental risks, new
treatments and a cure.
What we need from you:
Call your representative and ask them to sign on to the letter.
To date, the following representatives have signed on:
Congresswoman Allyson Schwartz and Congressman Joe Sestak. We
need as many representatives as possible to sign the letter! You
can call the capital switchboard at 202-224-3121 and ask to be
connected to your representative.
If you do not know who your representative is, visit
congress.org.
...March 4, 2010 - Woman opens doors for
accessibility awareness
Jackie Jackson is single-handedly responsible for putting
elected officials across North Jersey in wheelchairs.
Her accessibility tours of government buildings have raised
public awareness of the obstacles people with disabilities face
on a daily basis and encouraged others living with MS to become
change agents in their own communities.
She spoke with elected officials and other leaders in town such
as the mayor, police chief and city council.
“I challenged them to spend a day in a wheelchair and ‘roll with
me,’” she said.
The reception from the participants was positive and Jackson
notes that “they were all great team players and very sensitive
to the idea that people with disabilities have to struggle
within their communities.”
Not only have elected officials welcomed the accessibility
tours, but they have been well attended by the media, local
leaders and the public.
“Everyone who has been with me on the accessibility tours is
amazed at what they find and the struggles that people with
disabilities face on a daily basis,” she said. “For the most
part, it is an eye opened for everyone and they appear to be
more sensitive about disability issues.”
Jackson has already conducted three tours in Franklin Township,
South Plainfield and Edison Township. She will be training the
Greater Delaware Valley Chapter’s government relations committee
to start accessibility tours in South Jersey, as well.
She encourages people with and without disabilities to become
advocates and get involved.
“It is my personal goal to empower others living with MS to
become their own self-advocates,” she said. “I believe that
making social changes is my niche in life, and I will continue
to be a champion for the cause.”
If you’d like to learn how to bring a wheelchair accessibility
tour to your town, contact Karen Mariner at
karen.mariner@pae.nmss.org
or 1-800-548-4611.
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