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

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New York family makes The Walk to Defeat ALS
a Bi-coastal affair

For the Abbate family the Walk to Defeat ALS is a
bi-coastal family affair. Elan Swanson first formed the walk team Donna Donna Bo Bonna in honor of her mom Donna who lives in Los Angeles, and was diagnosed with ALS in 2016. But just one Walk team wasn’t enough, so Chris Abbate, Donna's brother, decided their team would have a presence on both coasts and will participate in both the Westchester and LA Walks.

July MU Image v3

The Abbate family and members of Team Donna Donna Bo Bonna. Donna is pictured in the back row, centered

"Donna has a big family support group here on the east coast because it is where she lived for years before moving out to LA two years ago for a job opportunity and to be closer to her daughter and granddaughter,” Chris said.

Chris said that for his family, the Walks are all about spreading awareness, raising funds, and keeping Donna’s spirits up. 

“We have noticed changes since her diagnosis. Her speech pattern has altered; she speaks a little slower, especially when the discussion becomes lengthy. When

it comes to physical work, she does things at her own pace, but she does NOT give up or ask for help. Donna is a fighter, strong and courageous in all aspects of her life.

Chris says the challenges haven’t stopped Donna from living her life to the fullest!

“She has been traveling quite a bit. We met her in Nashville and she also recently went to Hawaii. She’s come back to NY twice, traveled to Vegas, and has a trip planned this year to Arizona,” Chris said.  “Even though the disease is having an affect on her it’s not effecting her joy or her love to live."

The Abbate family says it’s important for others to step up and get involved now, before it hits close to home.

“Get involved because you never know when it might affect you or your family, or a close friend. If it does, try and support them as best you can. I encourage people to help by walking, and if possible, by donating,” Chris said. "Our entire family is Donna's support team and we do it all for her."

To find a Walk to Defeat ALS in your area, head to our website and register today for one of our 3 remaining Fall Walks!

www.ALSWALKS.org 
or call 1-800-672-8857


Thank you to everyone who supported
our Spring Walk Season! Spring Walk 2017 Collage

We had an amazing turnout for all 4 Walks to Defeat ALS in New York City, Jersey Shore, North Jersey and Westchester. The Spring season might be over, but there is still plenty of time to get involved, either by donating to a walk team, or registering today for one of our 3 remaining Fall Walks. http://als-ny.org/GNYWalks/2017/main.htmlWe look forward to seeing you all in the Fall!

Donate Today


JULY SUPPORT GROUP DATES

MANHATTAN, NY
Tuesday, July 18th, 2017 - 6:00 to 8:00 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: Medicare & Medicaid Eligibility
Speaker: Elisha Wellerstein, Esq., Elder Care Attorney
Next month's support group meets: August 15th, 2017

QUEENS, NY
Wednesday, July 19th, 2017- 6:00 to 8:00 pm
SilverCrest Center for Nursing and Rehabilitation
144-45 87th Avenue
Briarwood, NY 11435
Contact: Michelle McKenzie, LMSW
(718) 644-1750
Topic: Open Discussion
Next month's support group meets: August group is cancelled; and, will resume its regular schedule in September

JAMES J. PETERS BRONX VA
MEDICAL CENTER

* Open To Veterans and Non Veterans *
Wednesday, July 12th, 2017 from 1:00 to 3:00 pm
130 West Kingsbridge Road
Bronx, NY 10468
1E - Dayroom SCI Unit
Contacts: Michelle McKenzie, LMSW (718) 644-1750
Carmen Rivas, RN (718) 584-9000 ext. 5405
April Jones, RN (718) 584-9000 ext. 5213
Topic: Managing ALS with Adaptive Devices
Speaker: Desiree Alvarado, OTR/L Occupational Therapist
Next month's support group meets: August 9th, 2017

NASSAU COUNTY, NY
July group is cancelled due to the July 4th holiday
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
Next month's support group meets: August 6th, 2017

SUFFOLK COUNTY, NY
July group is cancelled due to the July 4th holiday
Stony Brook University, Dept. of Neurology
179 N. Belle Mead Road
East Setauket, NY 11733Contacts: Cindy Keyser-Posner, LMSW (631) 416-2767 Theresa Imperato, RN (516) 946-5467 Next month's support group meets: August 1st, 2017

WESTCHESTER, NY/WHITE PLAINS
Tuesday, July 11th, 2017 - 6:00 to 8:00 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: August 8th, 2017

LOWER HUDSON VALLEY, NY
July group is cancelled due to the July 4th holiday
Ambulatory Surgery Center Bldg. C, 1st Fl.
200 Westage Business Center
Fishkill, NY 12524
Contacts: Helen Mayer, RN (845) 520-0952
Nancy Brenner, LCSW, (914) 406-3513
Next month's support group meets: August 1st, 2017

NORTHERN NJ
Thursday, July 6th, 2017- 7:00 to 9:00 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: Open Discussion
Next month's support group meets: August 3rd, 2017

SPECIALIZED SUPPORT GROUP FOR NEWLY DIAGNOSED 
Northern New Jersey
Thursday, July 27th, 2017 - 7:00 to 9:00 pm
For more information or to sign up for the support group, please contact: 
Mary Ann Mertz, RN, (908) 552-5573
or Debbie Schlossberg, LMSW,
(732) 710-8832

CENTRAL NJ 
Saturday, July 15th, 2017- 1:30 to 3:30pm  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: Open Discussion
Next month's support group meets: August 19th, 2017

TELEPHONE SUPPORT GROUPS

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

Caregivers group: Every Wednesday from 4 to 5pm

SUMMER CAMPS FOR KIDS

If you are interested in summer camps for kids who are coping with a loved one with ALS or who are already bereaved, please call Sue Zimmerman, LCSW, Patient Services Coordinator at 212-720-3050 for information. 


Join our Young Professionals Group

The Young Professionals Group 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@als-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. Christine 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 Brett Murphy, Development Manager, at (212) 720-3052 or bmurphy@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 Today

Your generous donation will help cutting edge research and provide much needed equipment and services to patients and families. 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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