ALS Association Greater New York Chapter

The ALS Association

December 2013 Monthly Update | The ALS Association Greater New York Chapter

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December 2013 Monthly Update from The ALS Association

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The holiday season is upon us again and we take this time to give thanks and to reflect back on the Chapter's accomplishments over the past year.

The Greater New York Chapter is among the most successful of The ALS Association’s network of 38 Chapters. This past year, our Chapter reached a significant milestone by raising more than $4 million to fund our key programs of Research, Patient Services, and Advocacy.

Patient service continues to be at the core of our Chapter’s mission. We now serve more than 750 people living with ALS and their families in our four areas of operations New York City, Long Island, Westchester County/Hudson Valley, and Northern & Central New Jersey.

Your support helped us to provide state-of-the-art multidisciplinary care at our three ALS Association Certified Centers of Excellence Beth Israel Medical Center, Rutgers Robert Wood Johnson Medical School, and Stony Brook University Hospital, as well as our ALS Association Program at the Hospital for Special Surgery, now in its second year of operation.

Your generosity allows us to act globally and locally. Our Chapter continues to fund some of the most innovative and rigorous ALS research in the world and to engage successfully in public awareness and advocacy efforts.

In May, our Chapter’s delegation of 30 advocates travelled to Washington, DC for National ALS Advocacy Day and reached out to our local Members of Congress to continue the urgent fight to develop effective treatments for ALS.

During the Spring and Fall, our Chapter sponsored seven Walks to Defeat ALS. More than 12,000 people participated and raised more than $2 million to advance our mission. Additionally, just last month at the 19th Annual Lou Gehrig Sports Awards Benefit, the Chapter raised $1.1 million for patient care services and research.

We are helping more people and we are funding more research. We are making progress -- thanks to you!

Thanksgiving is now passed, but it's never too late to express our gratitude to all of our volunteers, donors, advocates, caregivers, and most of all - our PALS. You are the heart & soul of this organization and it is a privilege to fight ALS alongside of you.

On behalf of the entire Board and Staff of The ALS Association Greater New York Chapter, I wish you the Happiest of Holidays & a peaceful New Year.


Dorine Gordon

Calendar of Events

12/4 - YPG Winter Happy Hour

The Chapter's Young Professionals Group is hosting a Winter Happy Hour on Wednesday, December 4th at Brinkley’s NYC (406 Broome St.) from 6:30 pm to 9:00 pm. This event is free to attend and a great way to meet other young professionals who are committed to striking out ALS. For more information, please contact Loren Domilici at or (212) 720-3060.

12/8 - Holiday Children & Teens Day

The Chapter is looking forward to once again hosting a special day during the holiday season for kids ages 8 to 18. Program involves art therapy as an enjoyable way for young people to express their emotions amongst others who are coping with the same problems and concerns. Pizza lunch with a make-your-own ice cream sundae bar for dessert, and a holiday goodie bag to take home. At the Chapter Office in downtown Manhattan on December 8th from 11:30 am to 3 pm. Call Chris Dunn, Patient Program Coordinator, for more information and to register for the event at (212) 720-3044.

12/10 - Holiday Shopping Event

Fight ALS as you shop this holiday season! Join The ALS Association Greater New York Chapter and J. McLaughlin at their 1311 Madison Avenue store (between East 92nd and 93rd Streets) on Tuesday, December 10th from 6pm to 8:30 pm. With 15% of proceeds from the evening benefiting our Chapter, start your holiday shopping with confidence that you are supporting a great cause. For more info, contact Regina Ackley at (212) 619-1400.

12/12 - Young Professional's Group Meeting

The next general meeting of the Young Professionals Group will be Dec. 12 at 252 West 37th Street, 17th Floor at 6:30 pm. For information please email

In Search of the Perfect Gift?

Sometimes the simplest gifts leave the biggest impression. This year consider making a big impression in support of our PALS (people with ALS).

Your gift can help support Patient and Family Services, Research and Advocacy.

Your donation allows us to be the constant and reliable support system our PALS and their families need while battling this disease. During this time of giving, please consider making a donation to support our efforts in fighting ALS and finding a cure.

All donations made on or before December 31st are tax deductible for 2013. To donate or more info, contact Loren Domilici, Development Manager at (212) 720-3060, email her at or click here.


December Support Groups

Sunday, December 1st
2 pm to 4 pm
North Shore LIJ
Plainview Hospital
888 Old Country Road
Plainview, NY
Contact: Theresa Imperato, RN
(516) 946-5467 and
Cindy Keyser-Posner, LMSW
(631) 416-2767
Topic: Holiday Pot Luck Party!
Next month's support group meets January 5th.

Tuesday, December 3rd -
6 to 8 pm
Stony Brook University
Dept. of Neurology
179 N. Belle Meade Road
East Setauket, NY
Contact: Theresa Imperato, RN
(516) 946-5467 and
Cindy Keyser-Posner, LMSW
(631) 416-2767
Topic: Holiday Pot Luck Party!
Next month's support group meets January 7th.


Tuesday, December 3rd
6:30 to 8:30 pm
Ambulatory Surgery Center
Building C - 3rd Floor
200 Westage Business Center, Fishkill, NY
Contact: Helen Mayer, RN
(845) 520-0952
Topic: Holiday Celebration!
Next month's support group meets January 7th.

Thursday, December 5th
7 to 8:30 pm
Kessler Institute for Rehabilitation
300 Market Street,
Saddle Brook, NJ
Contact: Debbie Schlossberg, LMSW and
Mary Ann Mertz, RN
(732) 710-8832
Topic: Holiday Celebration!
Next month's support group meets January 2nd.


Tuesday, December 10th
6 to 8 pm
Burke Rehabilitation Center785 Mamaroneck Avenue
Main Hospital, Building 7
1st Floor, Conference Rm G-41
White Plains, NY
Contact: Helen Mayer, RN
(845) 520-0952
Topic: Holiday Celebration!
Next month's support group meets January 14th.


Saturday, December 14th
1 to 3pm
Rutgers Robert Wood
Johnson Medical School
Medical Education Building
Room 108A
180 Somerset Street
Follow signs to meeting
Contact: Debbie Schlossberg, LMSW and
Mary Ann Mertz, RN
(732) 710-8832
Topic: Holiday Celebration!
Next month's support group meets January 18th.

Tuesday, December 17th
6 to 8 pm
Phillips Ambulatory Care Center (Beth Israel)
10 Union Square East
(b/w 14th & 15th streets), Neurology Dept.
5th Floor Conference Room
Contact: Jody Wiesel, PhD,
(917) 699-9751
Topic: The importance of good nutrition.
Next month's support group meets January 21st.

For caregivers and patients.
Caregivers group - every Friday
from 11 AM to 12 PM.
Patient group - every Friday
from 3 PM to 4 PM.
Contact: Sue Zimmerman, LCSW
at (212) 720-3050

ask ben logo.jpg

I have ALS and recently it's been easier for me to sit in a comfortable chair with my iPad, rather than sit at my computer. However lately, I'm finding it harder to even use the iPad. I do use the special stylus a bit, but is there anything I should consider to make the iPad easier to use?

-- Todd, Poughkeepsie, NY

I'm happy to say that as of September, yes there is. For someone who struggles with moving their finger around the screen, "switch scanning" has recently become available on the iPad (2 and up) and iPhone (4 and up) with the iOS7 operating system. A switch is an external button you 'tap' (acquired separately). Switch scanning allows you to activate various locations around the screen, from navigating apps to composing emails, with a single tapping motion.

For the more technology-oriented who are reading this, and if you have a family member who might need some help with implementing new technology, my suggestion is to learn it first yourself. There are many adjustments to get it just right.

With the right adjustments in the settings menu (primarily in 'Accessibility' and the 'Switch Scanning'), you can continue to use the iPhone or iPad, with diminished hand control. Instead of moving your finger to, and touching, any point on the screen, the device does that for you. A highlighted block moves around the 'touchable areas' of the screen. When the area you want to select is highlighted, you press a switch. This tells the device which location to activate with one motion. That motion can be tapping the screen (in one place) with a finger, or tapping a switch connected through a wireless Bluetooth connection.

A point scan method is also available. Point scanning moves a horizontal line and vertical line across the screen. With a switch, or tap on the screen, you can 'select' where the lines intersect, and that specific point is activated. It could be a letter while you are typing, or it could be a news items and you want to link to the story. Everything is available. It is faster to press the buttons directly. But if that is difficult, switch scanning is a good option.

Apple has a description of switch and point scanning on their website (search their website for iOS using switch scanning) and there are also numerous YouTube videos to help get you get started. As with anything new in technology, there is a learning curve. Give yourself some time to learn the options and settings. NOTE: If you get stuck, 3 clicks on the home button turns off the switch scanning.

While the new functionality of iOS7 will allow you to continue to use your iPad, it is a learning process that requires practice and focus in order to improve. The result will be that you have the full access to the iPad, including apps to communication more effectively with loved ones and caregivers.

Have a wonderful holiday season, and a Happy New Year.

- Ben

Ben Lieman, ATP, MSW is the Assistive Technology Specialist with the Greater New York Chapter, advising patients and caregivers about medical equipment, home accessibility, and augmentative communications devices. To ask Ben a question, simply email him at or call at (212) 720-3057. Ben will answer all questions directly as usual, but not all questions will appear in the Monthly Update.

19th Annual Lou Gehrig Sports Awards Benefit Raises Over $1.1 Million For ALS Research & Patient Care

On November 7th the Chapter honored four outstanding athletes at the 19th Annual Lou Gehrig Sports Awards Benefit. Honorees who received the prestigious Lou Gehrig Sports Award included recently retired New York Yankees closing pitcher Mariano Rivera, former New York Mets pitcher and sports broadcaster Ron Darling and former New York Giants quarterback and sports broadcaster Phil Simms. Former fullback for the New England Patriots and Philadelphia Eagles Kevin Turner, who is battling ALS himself, was also honored. The character, courage, and determination shown by each of the awardees truly embody the legacy of Lou Gehrig.

ESPN’s Jeremy Schaap served as the evening's emcee.

Additionally, the Jacob K. Javits Lifetime Achievement Award was presented to philanthropist and entrepreneur Richard P. Essey, Chairman of The TemPositions Group of Companies, for his decades-long support for The ALS Association.

The evening was a great success, raising over $1.1 Million for ALS research and patient care services. To view the photo gallery from the event, please click here.

Thanksgiving Care

As in every year, the end of November is highlighted by Thanksgiving and the start of the Holiday Season. November is also National Caregivers Month.

A tradition at the Greater New York Chapter is to provide Thanksgiving meals to people living with ALS and their family and caregivers. This year nine families received a traditional Thanksgiving meal with a turkey, delicious sides, and dessert. Additionally, family and caregivers receive a basket with plates, napkins, cups, and some delectable treats to complement the holiday and to ease some of the added stress that comes with the season.

Special thanks to the dedicated volunteers and members of the Chapter's Young Professionals Group (YPG) for delivering these baskets and bringing families impacted by ALS a bit of cheer during the holidays.

Walk to Defeat ALS Has
Another Record-Breaking Season!

Congratulations to the thousands of Walkers who participated in the 2013 Walks to Defeat ALS! With seven Walks, 671 teams, and over 12,000 Walkers joining together in the fight against Lou Gehrig’s Disease, it was another record-breaking and inspiring year.

We are delighted to report that through your work and dedication, the 2013 Walks raised over $2,047,000 to date! But it's not too late for you to defeat ALS and to be a part of the Walk. Click here to donate to a Walk team near you and help them reach their goal.

Also, there were many photos taken at each Walk. To view or purchase photos of the 2013 Walks, please click here. They make a great holiday gift!

Stay tuned for dates for the 2014 Walks to Defeat ALS season coming soon!

Team ALS is Running 4 A Cure

As we wrap up our final month of Team ALS races, we'd like to share with everyone the wonderful achievements of Team ALS.

2013 has been a fantastic year for Team ALS. With Team enrollment on the rise, we broke a number of Team records (and a lot of personal records too!):

29 Team Members
2 Half Marathons
2 Full Marathons
1 24-Hour Race

Over $90,000 and a tremendous amount of awareness was raised!

For more information on upcoming Team ALS races including the 2014 NYC Half Marathon, please visit the TEAM ALS website at: or contact Kristen Cocoman, Director of Marketing & Special Events at or (212) 720-3048. All Team ALS members will receive an official TEAM ALS t-shirt.

Thank you Team ALS for a fantastic season!

In Need of Help?

If you are a patient, caregiver, or family member and need a little help to lighten your work load please contact us and we will request a volunteer for you. Volunteers can help in many ways - from walking your dog, shopping, or just reading aloud.

If you live in New York please contact Christine Dunn at (212) 720- 3044 or If you live in New Jersey contact Debbie Schlossberg at (732) 710-8832 or

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.

The next general meeting of the Young Professionals Group will be Dec. 12 at 252 West 37th Street, 17th Floor at 6:30 PM. For information please email

For information about the ALS Association's Young Professionals Group, please click here or contact Loren Domilici at or (212) 720-3060. 

Información en Español

The Greater New York Chapter website now has information on ALS and Chapter services in Spanish.  If you know someone with ALS who may need information in Spanish, please refer them to



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 or (212) 720-3051.


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: for New York, or Debbie Schlossberg at (732) 710-8832 or email: for New Jersey.


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 Loren Domilici, Development Manager, at (212) 720-3060 or email To mail a donation, please address to: The ALS Association Greater New York Chapter, 42 Broadway, Suite 1724, New York, NY 10004. Thank you for your generous support.


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.

Learn more:  Research | Blog | How to Help 

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