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


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February 2017

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The Secret Behind One Couple's
True Love Story

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We have heard the phrase countless times - at every wedding we've attended; "in sickness and in health," but what does that really mean?

For Caroline and Bruce Winterton in sickness and in health took on new meaning about 3 years ago when Bruce was diagnosed with ALS.

"In sickness and health means putting him first always, but the hard part is, it also means taking care of yourself so that you can take care of him," Caroline said.

Caroline says their connection was instantaneous. "We just kind of hit it off. He asked to take me out and it was love after our first date. We haven't looked back since," Caroline said.

But the past few years have put their relationship to the test, a test she said they get through each day with a healthy dose of humor.

"For me it's really about finding the joy in the everyday, even when the everyday isn't going how you anticipated. I think some of the hardest moments we had were reconciling we aren't going to have kids and we aren't going to be able to do certain things. You have to be able to mourn those moments and move on, rather than letting them define you. Happiness and love is what defines you, not the perfect plan. Everybody goes into a marriage with a plan, but life will not let you keep a plan, so you have to embrace it," Caroline said.

The Wintertons say the secret to their relationship is much simpler than people think. "We've been married almost 11 years and he has always put me first, even now when he can't, he tries to put me first," Caroline said. "The secret to our marriage I think is laughter, humility, kindness and a lot of Prosecco."

While keeping the romance alive can be hard when taking on the caretaker role, Caroline says the little things go a long way.

"We read an article about how otters sleep holding hands so they don't float away, and we both sent it to each other, and immediately said we are otters, because we still sleep together every night holding hands," Caroline said.

Caroline said now every time she travels for work she waits for the text from Bruce, saying I miss my otter, because 11 years later it's still the simple things that matter most.

In honor of Valentine's Day, The ALS Association Greater New York Chapter salutes Caroline and Bruce's love story - and the thousands of beautiful and unique love stories of the families we proudly serve.

CLICK HERE to read our PALS Love Story: Our 50 Year Journey

CLICK HERE to read our PALS Love Story: Love at First Dance


FEBRUARY SUPPORT GROUPS

NASSAU COUNTY, NY
Sunday, Feb. 5th, 2017 from 2 to 4pm
Northwell Health - Plainview Hospital
888 Old Country Road
Plainview, NY 11803 (Downstairs)
Contact: Cindy Keyser-Posner, LMSW
(631) 416-2767
Carol Bishop, RN, (631) 219-0947
Topic: Open Discussion
Next month's support group meets:
Mar. 5th, 2017

LOWER HUDSON VALLEY, NY
Tuesday, Feb. 7th, 2017 - 6 to 8 pm
Ambulatory Surgery Center Bldg. C, 3rd Fl.
Suite 130 (across from the elevator)
200 Westage Business Center
Fishkill, NY 12524
Contacts: Helen Mayer, RN
(845) 520-0952
Nancy Brenner, LCSW, (914) 406-3513
Topic: Open Discussion
Next month’s support group meets:
Mar. 7th, 2017

SUFFOLK COUNTY, NY
Tuesday, Feb. 7th, 2017 - 6 to 8 pm
Stony Brook University, Dept. of Neurology
179 N. Belle Mead Road
East Setauket, NY 11733
Contacts: Cindy Keyser-Posner, LMSW
(631) 416-2767
Theresa Imperato, RN (516) 946-5467
Topic: Open Discussion
Next month’s support group meets:
Mar. 7th, 2017

WESTCHESTER, NY/WHITE PLAINS
Tuesday, Feb. 14th, 2017 - 6 to 8 pm
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: Open Discussion
Next month’s support group meets:
Mar. 14th, 2017

MANHATTAN, NY
Tuesday, Feb. 21st, 2017 - 6 to 8 pm
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: A caregiver's perspective: Caregiving advice for PALS and caregivers
Speaker: Stephanie Rosenfeld (Caregiver)
Next month’s support group meets:
Mar. 21st, 2017

NORTHERN NJ
Thursday, Feb. 2nd, 2017- 7 to 9 pm 
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: Tips for Home Modifications and Other Assistive Technology Devices
Speaker: Ben Lieman, MSW, Assistive Technology Specialist
Next month’s support group meets:
Mar. 2nd, 2017

CENTRAL NJ
Saturday, Feb. 18th, 2017-
1:30 to 3:30 pm
Robert Wood Johnson Fitness &
Wellness Center
100 Kirkpatrick Street
New Brunswick, NJ 08901, Level 2
Community Education Room
Contacts: Debbie Schlossberg, LMSW
(732) 710-8832
Mary Ann Mertz, RN, (908) 552-5573
Topic: Tips for Home Modifications and Other Assistive Technology Devices
Speaker: Ben Lieman, MSW, Assistive Technology Specialist
Next month’s support group meets:
Mar. 18th, 2017

TELEPHONE SUPPORT GROUPS
Please contact Michelle McKenzie, LMSW at 212-720-3045 for further info.

 2017 Walk Dates

New York City - Sat., May 6, 2017

Jersey Shore - Sun., May 21, 2017

North Jersey - Sun., June 4, 2017

Westchester, NY - Sun., June 25, 2017

Long Island - Sat., Sept. 16, 2017

Central Jersey - Sat., Oct. 7, 2017

Hudson Valley, NY - Sun., Oct. 15, 2017


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Paralyzed Veterans of America (PVA) Education Foundation
Enables Assistive Technology Demonstration Project

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The ALS Association Greater New York Chapter works hard with the help of PVA to provide services and care to veterans diagnosed with ALS. Seen here is veteran and PALS Andre Williams, and wife Antoinette Williams.

The ALS Association Greater New York Chapter’s (ALS-GNY) Assistive Technology Demonstration Project enhances the lives of people with ALS (PALS) by building awareness of the computer and other technology that can help them communicate, and remain mobile and independent, for as long as possible. This critical effort is currently being funded by the Paralyzed Veterans of America Education Foundation (PVA), with a grant of $44,157.

The Project involves ALS-GNY’s assistive technology specialists, as well as members of our four Regional care teams, who are demonstrating a variety of available equipment to PALS, their caregivers and healthcare providers. Demonstrations take place during Home Visits and PALS and caregiver support groups, and at our five ALS-GNY Centers, area nursing homes, long-term care facilities, veterans’ hospitals, and hospices. 

One PALS who benefited from the Project is a 68-year-old living in a nursing home who’d been successfully using eye-tracking software to enable communication. When the technology stopped working for her, an ALS-GNY specialist visited to find out why and provide a solution. Due to her disease progression, the patient’s posture had shifted enough to misalign her eye and computer. In addressing the issue, our specialist also trained nursing home staff about the technology and how to help their patient maintain the ability to communicate going forward. Healthcare providers also learned about the full complement of ALS-GNY’s patient services, which enhances their ability to care for every PALS in their care.

ALS-GNY is grateful to the PVA Education Foundation for their generosity, which is positively impacting hundreds of PALS, as well as their caregivers and healthcare providers, in our region.


ALS Association Greater New York Chapter
Receives 4 Star Charity Rating

The ALS Association Greater New York Chapter is proud to announce once again it has been awarded 4-Stars by Charity Navigator for demonstrating strong financial health, and commitment to accountability and transparency.

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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 alsypg@gmail.com. For information about the ALS Association's Young Professionals Group, contact Brett Murphy at (212) 720-3052 or bmurphy@als-ny.org. Visit the YPG website here.

 


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 wolcson@aol-ny.org.


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: www.cdc.gov/als.

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


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 dunn@als-ny.org.


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 cocoman@als-ny.org.

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 Regina Ackley, Chief Operating Officer, at (212) 720-3047 or ackley@als-ny.org.

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 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: dunn@als-ny.org.

Donate

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 ackley@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.

Tribute

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 tribute@als-ny.org.

Connect

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 social media: Facebook | Twitter | ALS Blog | YouTube | LinkedIn.

Find our Walk to Defeat ALS on social media too: Walk Facebook Page | Walk Twitter.

Learn more:  Research | Blog | How to Help 


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