November 2017 Monthly Update | The ALS Association Greater New York Chapter

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November 2017

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Each November, we honor our caregivers for their efforts, commitment, and unwav-ering dedication to their loved ones in the fight against ALS. Every caregiver has their own personal story, and we are so thankful to the Kennedy Family of Campbell Hall, New York, for sharing their story with us.

Tom Kennedy met his wife Kathy at her sister's New Year’s Eve party in 1977, and by Valentine's Day, they had their first date. Tom, who used to work with Kathy's sister, went to work the next day and told her, "I am going to be your brother-in-law." Tom was right, and the two were married a year and a half later. 

Eventually starting a family, the Kennedy's had four amazing children, Lisa, Thomas, Sean, and Ryan. Despite a promising career, as soon as their eldest was born, Kathy knew she wanted to stay home. Kathy took incredible care of their children, supporting all their endeavors from school to extracurricular activities like music and horseback riding. Tom spoke in awe of his wife, "it's unbelievable the job she did."

Kathy was active both with her children and in her lifestyle, walking two miles every day. While on a routine walk, Kathy tripped and fell on her way home. At first, she thought nothing of it, but after several more falls, Kathy started down the road so many have gone before, numerous doctor’s visits and tests, all unable to explain her weak foot. At age 59, after visits to Columbia University Medical Center and The Mayo Clinic, Kathy was officially diagnosed with ALS. 

Upon receiving the news, Tom said, "It was hard." As a Yankees and Lou Gehrig fan, he knew what the diagnosis meant and what he’d have to do: "I'm being told I'm losing my wife, losing my best friend. So I have to step it up and make sure she's comfortable. Whatever she needs, I’ll take care of it."

Now, two years after the diagnosis, Tom feels the most important thing he can do as a caregiver is just to love his wife and family as he always has. Already a tight-knit group, he believes this has brought them even closer. All four children now live back home and split their schedules to care for their mother. "The children are amazing," Tom said proudly, "No matter what she needs, whoever is there will run and do whatever has to be done."

Grateful for everything their mother provided them, all four children say it's “their turn" to help her now. Getting emotional, Tom said, "I couldn't ask for anybody else to give better care to my wife, their mother, than my four kids." Although there are challenges and misunder-standings, "Everyone is just trying to do the right thing," Tom said. The Kennedy’s also make sure they do some of the same things they did before Kathy’s diagnosis. Whether sharing meals or watching TV, everyone wants it to feel how home always felt growing up.

Working together as a family, Tom also notes they’ve received great support from The Greater New York Chapter’s clinic at the Hospital for Special Surgery. Tom shared that the staff is "so loving, caring, and understanding of patients.” Even though they see the same thing every day “they just don't change. They give everyone the same understanding.” 

While the ALS diagnosis has been difficult, their family bond and love for Kathy remains strong. When asked to share what he's learned with other caregivers out there, Tom replied, "The only advice I can tell somebody is, if you love somebody before this happens, you're going to continue to love them, love them more, and help them any way you can."

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Tuesday, November 21st, 2017- 6:00 to 8:00pm 
Mt. Sinai Beth Israel Hospital
Phillips Ambulatory Care Center
10 Union Square East (b/w 14th & 15th Sts.)
New York, NY 10003
Neurology Dept., 5th Floor Conf. Room
Contact: Jody Wiesel, PhD, (917) 699-9751
Topic: National Caregivers Month/ Stress Reduction Techniques
Speaker: Sue Zimmerman, LCSW
Next month's support group meets: Dec. 19th, 2017

Wednesday, November 15th, 2017- 6:00 to 8:00 pm
The SilverCrest Center for Nursing and Rehabilitation
144-45 87th Avenue - 1st Floor Dining Room/Lounge, Briarwood, NY 11435
Contacts: Michelle McKenzie, LMSW
(718) 644-1750
Tracy Sandy-Ali, MPH, LPN, CCRC,
(631) 697-6314 

Topic: National Caregivers Month/Caregiver Presentation
Next month's support group meets: Dec. 20th, 2017

* Open to veterans and non veterans *  
Wednesday, November 8th, 2017-1:00 to 3:00 pm
130 West Kingsbridge Road - 1E Dayroom SCI Unit, Bronx, NY 10468
Contacts: Michelle McKenzie, LMSW
(718) 644-1750

Carmen Rivas, RN (718) 584-9000 ext. 5405
April Jones, RN (718) 584-9000 ext. 5213
Topic: National Caregivers Month/Radicava Update
Speaker: Noam Harel, M.D.
Next month's support group meets: Dec. 13th, 2017 

Sunday, November 5th, 2017 - 2:00 to 4:00 pm
Northwell Health - Plainview Hospital  (Downstairs)
888 Old Country Road, Plainview, NY 11803
Contact: Cindy Keyser-Posner, LMSW 
(631) 416-2767
Carol Bishop, RN, (631) 219-0947
Topic: Open Discussion
Next month's support group meets: Dec. 5th, 2017
** Please note there will be a change in date and location for December **


Tuesday, November 7th, 2017 - 6:00 to 8:00 pm
Stony Brook Family Medical Group
181 North Belle Mead Road, Suite 5
East Setauket, NY 11733
Contact: Cindy Keyser-Posner, LMSW
(631) 416-2767
Theresa Imperato, RN, (516) 946-5467
Topic: National Family Caregivers Month/Radicava Update
Speaker: Robin Krantz, MSN, RN, Clinical Educator for MT Pharma
Next month's support group meets: Dec. 5th, 2017

Tuesday, November 14th, 2017-6:00 to 8:00pm
Burke Rehabilitation Center
785 Mamaroneck Avenue, Building 7
White Plains, NY 10601
Contacts: Helen Mayer, RN (845) 520-0952
Nancy Brenner, LCSW, (914) 406-3513
Topic: National Caregivers Month/Open Discussion
Next month’s support group meets: Dec. 12th, 2017

Tuesday, November 7th, 2017 - 6:00 to 8:00 pm
Ambulatory Surgery Center Bldg. C, 3rd Fl.
200 Westage Business Center, Fishkill, NY 12524
Contacts: Helen Mayer, RN (845) 520-0952
Nancy Brenner, LCSW, (914) 406-3513
Topic: National Caregivers Month/Open Discussion
Next month’s support group meets: Dec. 5th, 2017

Thursday, November 2th, 2017- 7:00 to 9:00pm 
Kessler Institute for Rehabilitation
300 Market Street, Saddle Brook, NJ 07663
Contacts: Debbie Schlossberg, LMSW
(732) 710-8832
Mary Ann Mertz, RN, (908) 552-5573
Topic: National Caregivers Month/Caregiver Presentation
Next month’s support group meets: Dec. 7th, 2017

Saturday, November 18th, 2017- 1:30 to 3:30pm
Robert Wood Johnson Fitness & Wellness Center
100 Kirkpatrick Street- Community Education Room, New Brunswick, NJ 08901, Level 2
Contacts: Debbie Schlossberg, LMSW (732) 710-8832
Mary Ann Mertz, RN, (908) 552-5573
Topic: National Caregivers Month/Caregiver Presentation
Next month’s support group meets: Dec. 16th, 2017


Patient group: 
Every Wednesday from 2:30 to 
3:30 pm 

Caregivers group: Every Wednesday from 4:00 to 5:00pm

Contact: Sue Zimmerman, LCSW
(212) 720-3050

Topics include: Open discussions or Meditation and Guided Imagery for Stress Reduction

Here's how you can make a difference.

Create a world without ALS by getting involved with The ALS Association Greater New York Chapter. Whether joining the Walk to Defeat ALS®, volunteering your time to support the ALS community, or sharing your story to honor our loved ones and spread awareness, there are plenty of ways to join the fight! Every action you take to Challenge ALS furthers our mission and accelerates finding a treatment and a cure for this devastating disease. For more information contact Kristen Cocoman at (212) 720-3048 or email

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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. To find out about the next general meeting of the Young Professionals Group please email For information about the ALS Association's Young Professionals Group, contact Jake Carlin at (212) 720-3054 or Visit the YPG website here.

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Matching Gifts: The Inside Scoop

Many companies allow their employees to direct their charitable giving programs through matching gifts. When an employee notifies the company that he/she has made a charitable donation, the company will make a gift of the same amount, and in some cases double the amount, to the same charitable organization. Matching Gift Programs are a wonderful way for employees to make their charitable dollars stretch farther at no cost to themselves.

If your company is eligible, request a matching gift form from your employer, and send it completed and signed with your gift. We will do the rest. The impact of your gift to The ALS Association Greater New York Chapter may be doubled or possibly tripled!

For more information, call Ruth Wolcson, Gift Coordinator, (212) 720-3041 or

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Sign up For The National ALS Registry

The National ALS Registry is an important tool researchers can use in the fight against ALS. People living with Lou Gehrig’s Disease may self enroll in the Registry via a secure online web portal at the Centers for Disease Control and Prevention:

For more about the ALS Registry, contact Christine Dunn in the Chapter office at (212) 720-3044 or Chris can also help you with your enrollment.

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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 a good book to you. Contact Christine Dunn at (212) 720- 3044 or

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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 Regina Ackley, Chief Operating Officer, at (212) 720-3047 or

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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 movie together or reading, or even helping with some household chores.

If you are looking for a way to get involved please click here to learn how you can help people with ALS. You can also call Christine Dunn at (212) 720-3044 or email:

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Make a generous donation to find a cure, fund life saving research or to provide much needed equipment and services. To make a donation online, please click here or contact Regina Ackley, Chief Operating Officer, at (212) 720-3047 or 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.

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Our online Tribute Wall offers individuals and families a way to honor and remember those whose lives have been affected by ALS. Through this online collection of photos, messages, and notes we hope to share the stories of the hundreds of people in our region with Lou Gehrig's disease. If you would like to share a message and a photo, please email your submission of the name of the person and a brief paragraph of no more 200 characters along with a photograph to

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