Are You Signed Up For
The ALS Registry?

If you're a PALS (Person with ALS), you should know about the National ALS Registry. Many have already enrolled, but if you haven't, we hope you'll
take these remaining summer months to do so.

The National ALS Registry is a program begun by Congress and run through the Centers for Disease Control and Prevention to collect, manage, and analyze data about PALS. The more people enrolled with the Registry, the more data will be collected, and the more accurate the information will be for researchers to analyze specific areas on which to focus, that could lead to an effective treatment and eventual cure for ALS.

How do you enroll? If you have a computer, it is easy to enroll with the National ALS Registry. A PALS, with the help if a caregiver if needed, can visit www.cdc.gov/ALS to get started. Questions will be asked about health, job, family history, military service. Initial enrollment could take 10-20 minutes and filling out additional survey could take as little as an hour. All the information collected is confidential, with only researchers of the CDC's Agency for Toxic Substances and Disease Registry (ATSDR) able to access that information, which would not have names along with it.

While the National ALS Registry works to provide information for researchers, it also is there to help you not only contribute amazing awareness for the disease, but to additionally provide opportunities for you to participate in clinical trials. New features in the last year allow PALS to contribute to a biorepository which collects samples of hair, blood, nails, and other resources that will provide researchers with even more data to identify the disease's commonalities.

Hear what three area PALS who've already enrolled, have to say about their experience:

“I will do anything I can do to find a cure for this condition. People came and took hair, nail, and blood samples. It was easy, plus it’s been good to touch base with others about the disease.” - Jane B., Ho Ho Kus, NJ

“I registered to try to raise awareness of the disease so people in Washington will understand and hopefully they’ll work toward moving drugs along faster so we can someday cure ALS. They need to change their research methodology and this can help.” - Michael Z., Wayne, NJ

“The Registry was very helpful with their resources and knowledge. I think this will spread more awareness and help, that they’ll start to find the cure. I also don’t feel alone in my hope.” - April S., Walden, NY

If you have questions about the National ALS Registry, please contact Manager of Communications & Public Policy Daryl Cochrane at (212) 720-3051 for assistance. Knowledge is power and with your help we can find a cure for ALS.

Calender of Events

8/1 - 6th Annual Carl S. Levine Cruise Fundraiser - The World Bar at Trump Tower. Contact Kristen Cocoman at (212) 720-3048 or cocoman@als-ny.org for details or to RSVP.

8/7 - Young Professionals Group monthly meeting. Contact Loren Domilici for details at ldomilici@als-ny.org or (212) 720-3060.

8/11 - ALS Awareness Day with Minor League Baseball's Staten Island Yankees. Contact Kristen Cocoman for info or to RSVP at cocoman@als-ny.org or (212) 720-3048.

8/25 Children & Teens Day (New York City) For kids 8-18 years old who've lost a loved one to ALS, at Little Shop of Crafts. For additional information, or to register your children, please contact Susan Zimmerman, LCSW at (212) 720-3050.

8/31 - ALS Awareness Day with Minor League Baseball's Hudson Valley Renegades. Contact Kristen Cocoman for info or to RSVP, at cocoman@als-ny.org or (212) 720-3048.

Keep Walking to Defeat ALS

It’s not too early to register for one of our two remaining Walks to Defeat ALS this Fall!

On Sunday, September 22nd, join us at the largest Walk in the country the Long Island Walk to Defeat ALS at Eisenhower Park in East Meadow, NY. More than 5,000 people from throughout the region will come together to do their part to raise funds and awareness in hopes of creating a world without Lou Gehrig’s Disease.

On Sunday, October 20th, the Chapter hosts one of the most scenic Walks to Defeat ALS nationwide. Enjoy the beautiful Fall foliage along the banks of the Hudson River, as we traverse the Walkway Over the Hudson in Highland, NY, in the heart of the Hudson Valley.

Both Walks offer a great day for the entire family, including music, activities for children, food, team mascots, and entertainment. You can also get more information on the Chapter’s services for people with ALS and caregivers and find more ways to get involved in the local ALS community year- round. Visit our website at www.alswalks.org to sign up!

August Support Groups

NORTHERN NJ/SADDLE BROOK
Thursday, August 1st
1pm to 3pm
Kessler Institute for Rehabilitation
300 Market St., Saddle Brook, NJ
Contact: Debbie Schlossberg, LMSW
and Mary Ann Mertz, RN,
(732) 710-8832
Topic: Open Discussion

NASSAU COUNTY, NY
Sunday, August 4th
2 pm to 4 pm
North Shore LIJ - Plainview Hospital
888 Old Country Road, Plainview - Downstairs
Contact: Theresa Imperato, RN,
(516) 946-5467 and
Cindy Keyser-Posner, LMSW
(631) 416-2767
Topic: Long Island Walk to Defeat ALS
Guest Speaker: Kristen Cocoman, Greater NY Chapter

SUFFOLK COUNTY, NY
Tuesday, August 6th
6 pm to 8 pm
Stony Brook University
Dept. of Neurology 
179 North Belle Meade Rd,
East Setauket
Contact: Theresa Imperato, RN,
(516) 946-5467
Topic: Long Island Walk to Defeat ALS
Guest Speaker: Kristen Cocoman, Greater NY Chapter

HUDSON VALLEY, NY
Tuesday, August 6th
6:30 pm to 8:30 pm
Vassar Bros. Medical Mall
Ambulatory Surgery Center
Bldg C, 3rd floor
200 Westage Business Center
Fishkill, NY
Contact: Helen Mayer, RN,
(845) 520-0952
Topic: Open Discussion

WESTCHESTER, NY/WHITE PLAINS
Tuesday, August 13th
6 pm to 8 pm
Burke Rehabilitation Center
785 Mamaroneck Avenue
Main Hospital, Bldg. 7,
1st Floor Conference Room G-41,
White Plains, NY
Contact: Helen Mayer, RN,
(845) 520-0952
Speaker: Ben Lieman, Assistive Technologist, Greater NY Chapter

CENTRAL NJ/NEW BRUNSWICK
Saturday, August 17th
1pm to 3 pm
Robert Wood Johnson University Hospital
Medical Education Bldg, Room 108A
180 Somerset Street
Follow signs to meeting
Contact: Debbie Schlossberg, LMSW
and Mary Ann Mertz, RN,
(732) 710-8832
Topic: Open Discussion

MANHATTAN, NY
Tuesday, August 20th
6 pm to 8 pm
Phillips Ambulatory Care Center (Beth Israel)
10 Union Square East
(b/w 14th & 15th Streets)
Neurology Dept. - 5th Floor Conf. Room
Contact: Jody Wiesel, PhD,
(917) 699-9751
Topic: Open Discussion

TELEPHNE SUPPORT GROUPS
For caregivers and patients.
Summer schedule: will be held on a bi-weekly basis:
8/9, 8/23, 9/6, 9/20
Contact: Sue Zimmerman at
(212) 720-3050

My mother has had ALS for over 3 years. She is unable to speak or move her muscles. She is using an eye tracking device on a trial basis. She “types” by looking at the letters on the screen, but her selections are not consistent. Are there any adjustments I can make so she can use the system better?

- Dorothy, Suffolk County

First, positioning is key. Eye-Tracking is a remarkable technology, and easy to use when set up correctly. The system must be facing perpendicular to the person’s face and eyes, and mounted at a certain distance from their face, usually around 18-24”. The adjustments needed to angle the device properly, take time, but can be the difference between success and frustration.

Secondly, it is important to be in contact with tech support of the manufacturer. Call them with a speaker phone nearby so you can make adjustments to the computer, while you are on the phone with them.

Eye-tracking, uses one of three methods to select options on the screen. Each selection method comes with its own range of adjustments.

1) Dwell (which is what your mother is currently using) requires the person to continue to look at the location on the screen they want to select. If you want to select the letter 'E' for example, you would look at the letter 'E’ for 1 second. That 1 second is called the “dwell time”, and the computer can be adjusted to accept faster or longer dwell times, depending on the capability of the individual. Since your mother is already using dwell, I would look first at adjusting the dwell time.

2) Another selection method is blink. While looking at the letter 'E', you then blink your eye (or eyes). The computer ‘sees’ the blink, and selects the letter you were looking at. This method reduces the need to continue to look at each letter (as in “dwell”), but it does require a secondary and consistent muscle movement.

3) A third method is using a switch. A switch attached to the computer, can be placed under a finger, behind your head, or anywhere there is slight movement. While looking at the letter 'E', the individual would also click the switch to select the 'E'. This method also requires a secondary movement.

Eye-Tracking works with most, but not all individuals. Even if not necessary at the time, it is useful to experience the eye-tracking process earlier than later. There are several manufacturers and they may be able to demonstrate the technology in your home. Contact me if you have any questions.

The Chapter has eye-tracking devices to loan, however there may be a wait list. I can also assist with the initial installation and set-up.

- Ben

To ask Ben a question, simply email him at blieman@als-ny.org or call at (212) 720-3057. Ben will answer all questions directly as usual, but not all questions will appear in the Monthly Update.

ALS Awareness at the Ballpark This Summer!

Summer is the perfect time to head on out to your local ballpark to have some fun while raising ALS Awareness! Last month the Chapter hosted a fantastic ALS Awareness Night with the Brooklyn Cyclones, and this month we are hosting two ALS Awareness Nights with the Staten Island Yankees on August 11th & with the Hudson Valley Renegades on August 31st. For tickets or more information, please contact Kristen Cocoman at: Cocoman@als-ny.org. Take your whole family out to the ball game and together we can strike out ALS!

Team ALS In Training “4 A Cure”

With just three months remaining until the 2013 ING New York City Marathon, Team ALS is in official training mode! The ALS Association Greater New York Chapter is honored to have so many dedicated athletes participating in this year’s Marathon with Team ALS. Our 2013 roster of 15 runners include both new and returning runners from around the world. To learn more about each Team ALS participant or to support the Team, please visit our Team website.

National ALS Registry

It's been over two years since the National ALS Registry opened through the Centers for Disease Control & Prevention. The federal government continues to make major strides in the Registry, updating questions on the various surveys and informing those with ALS about the tremendous usefulness of this tool. As the third year unfolds, we should begin to see some of the preliminary results from the Registry and get one step closer to finding the causes of the disease and therein ways to treat it and stop it all together.

If you are living with ALS and have not yet enrolled, please do so today. If you have enrolled, but have not completed the full array of surveys, it is important that you do so and provide as much information as possible. Please visit www.cdc.gov/als.

For more information about the registry go to www.als-ny.org or call the Chapter office at (212) 720-3044 and ask for Chris Dunn.

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 dunn@als-ny.org. If you live in New Jersey contact Debbie Schlossberg at (732) 710-8832 or schlossberg@als-ny.org.

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.

Last month’s YPG Summer Happy Hour was a great success! Thanks to all for coming. The next general meeting is August 7th. Location TBD.

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

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 www.als-ny.org/espanol.

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.

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.

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 ldomilici@als-ny.org. 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.