NJ Congressman Introduces the MODDERN Cures Act
At a press conference last month in Westfield, NJ, U.S. Representative Leonard Lance (7th District) announced the introduction of the Modernizing Our Drug and Diagnostics Evaluation and Regulatory Network (MODDERN) Cures Act. This bill would remove barriers to scientific research, provide incentives to develop new diagnostics, and foster medical innovations in order to ultimately accelerate the search for an effective cure and treatment for ALS.
Pictured are some of our New Jersey ALS advocates, as well as the Chapter’s Patient Services Coordinator from the ALS Center of Excellence at Robert Wood Johnson University Hospital meeting with Congressman Lance.
The ALS Association Greater New York Chapter urges you to become an advocate and learn more about opportunities to educate your elected officials on the federal, state, and local levels about the devastating impact of ALS. Sign up as an advocate today and stay tuned for future advocacy actions. In the meantime, click here to call or email Congressman Lance and thank him for introducing the MODDERN Cures Act.
Help Find a Cure
Become a member of The ALS Association Greater New York Chapter Research Council. The Research Council is an annual giving program that acknowledges the important support of individuals who make gifts of $1,000 or more annually to research.
Members of the Greater New York Chapter Research Council play an important role in funding aggressive, cutting-edge ALS research. This year you can help find a cure for ALS.
For more information, please contact Janet Diminich, Senior Development Officer at (212) 720-3060 or jdiminich@als-ny.org.
Log In & Tune In
Find out the latest on ALS research, advocacy, patient service technology, events and more! Follow us on Facebook and on Twitter. Like us, follow us, and get important information on all everything related to ALS and the Chapter.
Advocacy Day Save the Date
The dates for the 2012 National ALS Advocacy Day & Public Policy Conference have been announced May 13-15. If interested in attending all or part of this meaningful event, please call (212) 61911400 and ask for the Advocacy Department. Learn more about public policy impacting ALS patients & research and speak directly with your Member of Congress. Hope to see you in Washington!
Sparkling Crystal
 February 1st marks a very special milestone for the ALS Association Greater New York Chapter. On that auspicious day our President & CEO Dorine Gordon celebrates her 15 year anniversary, her crystal anniversary, as head of the Greater New York Chapter.
Much like crystal, Dorine has provided us with shining leadership and clarity of mind to see this Chapter through its infancy into what it is today. Under her direction, the Chapter has grown from a group of dedicated volunteers who helped make patient referrals and provide as much supportive care as possible into one of the largest of The ALS Association’s national network of 42 Chapters. In 1997, the chapter staff consisted of Dorine and a couple of other part-time employees. Fifteen years later, we have more than 20 full-time and part-time staff.
Today, the Chapter has a budget of over $3 million and serves more than 600 PALS and their family members in New York City, Northern & Central New Jersey, Long Island, Westchester and Rockland counties and now the rest of the lower Hudson Valley Region, too. And in those 15 years Dorine has led the Chapter’s efforts in directing nearly $7 million to ALS research.
A crystal is complex, steadfast, beautiful, and inspires awe. Dorine possesses all of those characteristics and much more. We are proud to be with her on this special day and congratulate her for all the tremendous work she has done and continues to do.
Thank You Again 2011 Walk to Defeat ALS Teams!!!
 Just late last month, the Greater New York Walk to Defeat ALS staff traveled to Nashville, Tennessee for the National Winter Walk to Defeat ALS Forum. We had the opportunity to meet other Walk staff from throughout the country, discuss best practices and gear up for what will be an AWESOME 2012 Walk to Defeat ALS season.
We were also honored to receive some fun and meaningful awards, all thanks to you. We are thrilled to announce that the Greater New York Chapter was the highest fundraising Chapter in the country for the THIRD year in a row. Thanks to the efforts of our amazing team captains, walkers, and sponsors, the GNY Walks raised over $1.57 million in 2011. A special thank you to Cathy Miller, Team Captain of Long Island Walk Team FOR THE LOVE OF JEMMA for her efforts in making her team the highest fundraising Walk team in the country raising $110,237!!
For the first time ever, the National ALS Association recognized the efforts of those walkers who are raising money through social media…and guess what…the Greater New York walkers are leading the way! (shameless plug follow us on Twitter and on Facebook.) We also won the award for Highest Amount of Money Raised on Facebook -
$34,991! Your efforts are bringing us one step closer to an effective treatment for ALS and ultimately, a cure.
THANK YOU for all of your hard work in 2011 and for your continued support in the fight against ALS! We look forward to making the 2012 Walk season our
best year yet!
National ALS Registry
 Over one year ago, the National ALS Registry first began collecting data. In that initial year people living with ALS throughout the country have registered and in doing so provided invaluable information on the effects of the disease as well as figures and statistics which will hopefully pinpoint a cause of ALS, that will lead to an effective treatment or cure. As we move into a New Year, and hopefully a year full of new discoveries in ALS research, every bit of data collected will directly and positively impact that research.
In addition to gathering key demographic information, the National ALS Registry recently added several new features, including components that will help people enroll in clinical trials and locate much needed services in their communities. A biorepository that collects DNA and tissue samples also may be added, and more surveys to explore potential risk factors for ALS are in the works.
The Registry is a powerful tool that has the potential to help find the cause and treatment for ALS. If you want to learn more about the Registry, including how to enroll, click on the image of Lou Gehrig above or go to the ALS Registry website at www.cdc.gov/als.
For more information about the registry go to: www.als-ny.org or call the Chapter office at (212) 619-1400.
This is the Year You Create Your Legacy
The beginning of a New Year is the best time to assess your financial situation. It’s also a good time for valued friends of the Chapter to consider making a planned gift to The ALS Association Greater New York Chapter.
Gifts that anyone can afford: A bequest in your will or living trust naming The ALS Association Greater New York Chapter as a beneficiary of your retirement plan, or a gift of life insurance are all ways to create your legacy in the fight against ALS while maintaining your current lifestyle and your family’s security.
Gifts that pay you income: A charitable gift annuity gives back in the form of fixed annual payments guaranteed to you and your spouse for life, as well as a charitable income deduction. A deferred charitable gift annuity also provides you with an immediate income tax deduction and you can designate your annuity payments to begin when you need them, such as retirement or when a grandchild needs help with tuition payments.
For more information, contact Janet Diminich at 212.720.3060 or jdiminich@als-ny.org. Thank you for your support.
MAKE A DIFFERENCE
Volunteer
We need volunteers to help our patients and their families. Some PALS may need help with daily tasks; families and caregivers of our PALS may need help as well to lighten their work load a bit. There are so many ways to help - from watching a video together or reading, or even helping with some household chores.
If you are looking for a way to get involved please call Christine Dunn at (212) 720-3044 or email: dunn@als-ny.org for New York, or Debbie Schlossberg at (732) 710-8832 or email: schlossberg@als-ny.org for New Jersey.
Donate
Make a generous gift to find a cure and fund life saving research and to provide much needed equipment and services. To make a donation online, please click here. Call Janet
Diminich, Senior Development Officer, at (212) 720-3060 or email jdiminich@als-ny.org. To mail a donation
to: The ALS Association Greater
New York Chapter, 42 Broadway, Suite 1724, New York, NY 10004.
Advocate
The Greater New York Chapter continues to be on the front
lines of policy debates that shape the lives of people with ALS. From healthcare to research to veterans
affairs, The ALS Association Greater New York Chapter is at the table on the
federal, state and local levels of government making the concerns of ALS
patients and their families and caregivers known. If you're interested in joining
our advocacy efforts, please contact Daryl Cochrane at dcochrane@als-ny.org or (212) 720-3051.
Join our Young Professionals Group
The YPG generates awareness of the fight against ALS (Lou
Gehrig’s disease) by developing fun, sophisticated and meaningful opportunities
for their peers to get involved in the cause. For information about the ALS Association's Young Professionals Group and upcoming meetings, please click here.
ALS Association Greater New York Chapter in Social Media
Find out instantly about the latest in ALS research,
advocacy efforts, special events, and patient services. Additionally, if you or
a loved one have a blog about living with ALS, please let us know. Stay connected.
You can find our chapter on many social media websites: Facebook | Twitter | ALS Blog | YouTube | LinkedIn. Find our Walk to Defeat ALS department on social media too: Walk Facebook Page | Walk Twitter.
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February 2012 
I'd like to share the story of my sister, Kathleen Borkes. Kathy was always everyone's angel; she led an extraordinary life of always caring for others before herself. Our mother, Dorothy, was diagnosed with ALS, back in the mid-90s and fell victim to it in 1997. Our father, George, and our grandmother would soon pass as well. She took care of them all for over ten years.