ALS Association Greater New York Chapter

The ALS Association

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

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September 2013

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Calendar of Events

NOW through November 13th - Brandy Library American Whiskey Benefit. Stop in for a glass of any American brand whiskey at the Brandy Library and all proceeds from your purchase will be donated to the Chapter for the Parker Beam Promise of Hope Fund, benefiting ALS research. Over 150 American Whiskeys to choose from! 25 N. Moore Street in TriBeCa,

11/3 - ING New York City Marathon. GO Team ALS! To cheer on Team ALS at this year's NYC Marathon, meet us at the SW corner of 85th St. & 1st Ave. Please contact Kristen Cocoman at or (212) 720-3048 for more info. To donate to Team ALS and show them your support, click here.

11/7 - The Nineteenth Annual Lou Gehrig Sports Awards Benefit. New York Marriot Marquis. Cocktails, silent auction, dinner and awards presentation. Honoring Mariano Rivera, Phil Simms, Ron Darling, & Kevin Turner. Emcee: Jeremy Schaap. Click here or call (212) 619-1400 for more information and to pichase tickets.

11/12 - Young Professionals Group monthly meeting. 252 West 37th Street, 17th Floor at 6:30 PM. Contact Loren Domilici at or (212) 720-3060 for info.

11/16 - Long Island Children & Teens Day. Dave and Busters, Farmingdale, NY. Ages 8-18 who have family members currently living with ALS. Arts & crafts, games, and socialization. Contact Theresa Imperato, RN at (516) 946-5467 or Cindy Keyser-Posner, LMSW at (631) 416-2767 for details - pre-registration is a must!

11/23 - The 3rd Annual Larry Magri Benefit and CD Release Party! The Village Pub in Lindenhurst at 6 PM. All proceeds go to The ALS Association Greater New York Chapter. Larry Magri is a local musician with Lou Gehrig's Disease. Admission is a $5 Donation and this will include a full buffet! Live music all night by Long Islands best local bands. Raffles, 50/50, and giveaways! For more information contact Ally Davis at

November is
National Caregiver's Month

by Adele Marano, LCSW
Director of Patient Services, Greater New York Chapter

When someone you love is diagnosed with ALS, the events that follow can result in a wide range of emotions -- from anxiety to feeling overwhelmed. For caregivers, these emotions, combined with the new demands placed on them can lead to a sense of frustration, loneliness, and guilt. In fact, more than 50 million people provide care for an ill, disabled or elderly family member or friend during any given year. A number of these caregivers take on their new responsibility as a full-time job.

Being a caregiver is hard work, involving emotional, financial, social, and nursing skills, often on a 24/7 basis. Many find themselves doing things they could not have previously imagined to ensure their loved one is properly cared for and their needs, both basic and complex, are met. However, when caring for another's needs, it's important to remember one's own needs, for a caregiver's work cannot get done if the caregiver is burned out.

Perseverance is a constant for ALS caregivers. But no matter how difficult the journey, please know that you are never alone. There are approximately 30,000 people living with ALS in the United States today and many times as many caregivers, some part-time, some full-time, some paid, some uncompensated, but regardless, all caregivers must be mindful to care for themselves, as well as the person with ALS in their life.

Here are ten helpful tips that may help caregivers cope:

1. Choose to take charge of your life and don’t let your loved one’s illness or disability always take center stage.

2. Remember to be good to yourself. Love, honor, and value yourself. You’re doing a very hard job and you deserve some quality time, just for you.

3. Watch out for signs of depression, and don’t delay getting professional help when you need it.

Feel free to speak to a Chapter social worker when they're visiting or calling your home. They are there as a resource, not just for the patient, but for caregivers as well. Also call the Chapter office to speak with a trained social worker.

4. When people offer to help, accept the offer and suggest specific things that they can do. This brief respite could allow you to run errands, visit with friends and family, or just relax.

5. Educate yourself about your loved one’s condition. Information is empowering.

Information about ALS can be found on the Chapter website: Also, caregivers should engage with healthcare professionals during medical visits, so you have a better sense of the disease and the toll it's taking on your loved one.

6. There’s a difference between caring and doing. Be open to technologies and ideas that promote your loved one’s independence.

The Chapter has an Assistive Technology Specialist - Ben Lieman - on staff to help you figure out what equipment or augmentative communications device is right for you and the one you care for. Such equipment can help with a variety of daily tasks, from lifting to moving throughout the home, to communicating. Ben can be reached at or 212.720.3057.

7. Trust your instincts. Most of the time they’ll lead you in the right direction.

8. Grieve for your losses and then allow yourself to dream new dreams.

9. Stand up for your rights as a caregiver and a citizen.

The Chapter has a robust legion of ALS Advocates who work to seek change in government. The ALS Association also hosts National ALS Advocacy Day & Public Policy Conference each year. Become an ALS Advocate.

10. Seek support from other caregivers. There is great strength in knowing you are not alone.

The Chapter offers a number of support groups throughout the region for PALS and caregivers, both in person and on the phone. Many people share your same concerns. Meet others coping with ALS. There is no need to feel alone.

To learn more about these or any of the services the Chapter offers for caregivers, please call (212) 619-1400.

November Support Groups

November is National Caregivers Month!

All groups will honor our caregivers, thanks to all of you - each one of you is truly an inspiration!

Sunday, November 3rd
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
Next month's support
group meets December 1st

Tuesday, November 5th
6 PM to 8 PM
Stony Brook University Hospital
Dept. of Neurology
179 North Belle Meade Rd.
East Setauket, NY
Contact: Theresa Imperato, RN
(516) 946-5467 and
Cindy Keyser-Posner, LMSW
(631) 416-2767
Next month's support
group meets December 3rd

Tuesday, November 5th
6:30 PM to 8:30 PM
Ambulatory Surgery Center
Bldg. C - 3rd floor
200 Westage Business Center,
Fishkill, NY
Contact: Helen Mayer, RN
(845) 520-0952
Guest speaker: Gioia Ciani, PhD
Occupational Therapist
Next month's support
group meets December 3rd


Tuesday, November 12th -
6 PM to 8 PM
Burke Rehabilitation Center
785 Mamaroneck Avenue,
Bldg 7, White Plains NY
Contact: Helen Mayer, RN
(845) 520-0952
Guest speaker: Dale Lange, MD
Next month's support
group meets December 10th

Thursday, November 14th
7 PM to 8:30 PM
This is date change for this month

Kessler Institute for Rehabilitation
300 Market Street,
Saddle Brook, NJ
Contact: Debbie Schlossberg, LMSW
and Mary Ann Mertz, RN
(732) 710-8832
Next month's support
group meets December 5th


Saturday, November 16th -
1 PM to 3 PM
Robert Wood Johnson
University Hospital
Medical Education Building,
Rm. 108A
180 Somerset Street,
New Brunswick -
Follow signs to meeting
Contact: Debbie Schlossberg, LMSW
and Mary Ann Mertz, RN
(732) 710-8832
Next month's support
group meets December 14th

Tuesday, November 19th -
6 PM to 8 PM
Phillips Ambulatory Care Center
(Beth Israel)
10 Union Square East
(b/w 14th & 15th Streets)
Neurology Dept.
5th floor Conference Rm.
Contact: Jody Wiesel, PhD
(917) 699-9751
Next month's support
group meets December 17th

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
at (212) 720-3050

Give Thanks!

November is Caregivers Month - a time to be thankful for the caregivers in our lives and to remember those that continue to struggle with everyday finances while remaining the strong support in a family affected by ALS. We all know how important caregivers are in the lives of PALS; they are the dedicated force making the life of PALS a bit more comfortable.

Please take this time to show your thanks for the caregivers in your life by making a donation to help another. Your gift, will help the Chapter provide supportive services including counseling home visits to our Chapter's caregivers and will speak volumes to show our caregivers they are not in this alone. Together, we can take care of them.

To donate or more info, contact Loren Domilici, Development Manager at (212) 720-3060 or

Saluting Our Veterans

Every November 11th our nation commemorates Veterans Day, honoring those have served in our country's armed forces. This is especially meaningful to the ALS community, as those who've worn a military uniform are twice more likely to develop ALS than civilians.While the exact cause remains unknown, the U.S. Department of Veterans Affairs offers an array of benefits those living with ALS who've fought for our country.

To honor those veterans with ALS, living and departed, The ALS Association created the Wall of Honor as a tribute. If you are a veteran, please join other area veterans and tell your story.

If you are a loved one of a veteran, please share their story on the Wall of Honor. Here are just some of the outstanding veterans of New York and New Jersey on the Wall of Honor:

Carol Costanza-Edwards -- Teaneck, NJ
Women's Army Corp (WAC), 1959-1961

Served at Fort Carson, just outside Colorado Springs, Colorado. She died of ALS just this past July, survived by four children and several grandchildren.

Leonard Gagliardi -- Brooklyn, NY
Navy, 1942-1945

Served as a Naval Medic during World War II in North Africa. After returning stateside he got married, moved to Freeport, NY and raised six children. He worked at the Daily News. His brother also died of ALS.

Luis Journett -- Union City, NJ
Army, 1963-1965

Stationed in Vietnam, he was a decorated sharpshooter in the Airbourne Division. After his tour of duty he returned to New Jersey and was married for 43 years, raising five children and having 16 grandchildren. He died in the Fall of 2011 after a brief battle with ALS.

Fred Ruprecht -- Wantagh, NY
Navy, 1951-1955

Served as an Engineman on the USS Purdy during the Korean War. Upon returning to civilian life he became a New York City Fire Fighter and raised four children with his childhood sweetheart. He was diagnosed with ALS just before Christmas 2006 at the age of 74, but continued to care for his wife who was suffering with Alzheimers. He died less than a year following diagnosis.

Andre Williams -- Far Rockaway, NY
Army, 1980-1986

Enlisted and was subsequently deployed to a field artillery unit in Germany testing tanks and cannons. Following his service, he worked for over 20 years as a plumber and plumbing instructor. Andre is an ALS Advocate, particularly on issues related to veterans.

To learn more about Veterans' benefits for those living with ALS or to tell your ALS story as a veteran (or posthumously by a loved one) on the Wall of Honor, please visit

The Greater New York Chapter salutes our troops and thanks them for their service to our country.

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My husband has ALS and is no longer able to transfer into a car comfortably.  Now our family can no longer take short trips together.  I was wondering about the possibility of getting a wheelchair accessible van.  Can you tell me how to best go about that?

- Karen, Mahwah, NJ

The purchase of a new or even used adapted vehicle can be costly, so there are a number of things to carefully evaluate when considering obtaining a wheelchair accessible vehicle.

One option is the outright purchase of an adapted vehicle. You can find adapted vehicles listed online or in the newspaper, or at some dealerships. But you need to be knowledgeable about vehicles. An adapted vehicle has the standard issues of car ownership…brakes, mileage, engine, tires, and also the added issue of a working wheelchair ramp. The ramp itself can be $3,000-$6,000 to repair. The cost is higher, if the ramp needs to be replaced. You can find used adapted vehicles starting at $5,000. (Buyer beware!) At a dealership, they could potentially offer a few months guarantee, which could afford you some recourse if you run into problems right away. New adapted vehicles can run up to $50-$60,000. This option is unfortunately cost prohibitive for many families, however, if you are able, you will then have constant access to a vehicle to come and go as needed.

Another option you might want to consider is a rental. Renting an accessible vehicle can be done just to get away for a day, or combine a trip to a restaurant or visit with a friend following a clinic visit. I encourage families to take advantage of this option at least once, if only to determine if it is something you would be comfortable doing again in the future.

In New York and New Jersey, there are a few companies that rent accessible vans, and the cost is not much higher than renting a car. Because there are only a few of these companies, you may have to drive to pick up the vehicle, and then drive it home to transfer the person with ALS into it. It may differ from having your own car, and there are some per trip costs, but being able to ‘get out’ is important. Each family must decide if it is worth it.

Since accessible vehicles are not as readily available as standard cars, advance planning is recommended. Even if you don’t need a vehicle at this time, contact the companies in your area, to know where they are located, and what the rental process is in advance. It will help be prepared if a need or opportunity comes up unexpectedly. For a list of companies that rent accessible vehicles in the New York/New Jersey area, please contact me.

Lastly, while our loan program does have a few wheelchair accessible vehicles, there is great demand and short supply, and therefore the waiting list to receive such a van can be quite lengthy, and could be as long as a year.

Regardless of which option is right for you and your family, having access to an adapted vehicle provides an extended range of involvement and independence.

- 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.

The Walks to Defeat ALS Finish
Strong in the Hudson Valley

The Hudson Valley Walk on October 20th was the final Walk of the 2013 season and it was by all accounts spectacular! Approximately 1,500 Walkers attended the Fifth Annual Event at the Walkway Over the Hudson and helped to raise over $150,000 to support patient services and programs in the Hudson Valley area. Families, friends and loved ones joined together for a day filled with great music, food and fun for everyone, all while raising awareness and funds to help defeat ALS!

While the Walks may be over, it’s not too late to donate! Please visit to make a contribution in support of our Walk Teams. Stay tuned next month for a final update on the 2013 Walk to Defeat ALS Season!

YPG Masquerade Event Raises $5K For ALS

The ALS Association’s Young Professional Group hosted their annual Fall Fundraiser on October 25th at Maxwell’s Bar & Restaurant in TriBeCa, NYC. This masquerade-themed event was attended by nearly 90 people including YPG members and their friends and family. Everyone came dressed in masks and costumes for a great night that raised almost $5,000 in support of the Chapter’s research and patient services programs. Thank you to those who came out and made this event a big success!

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 Nov. 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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