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

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June 2017

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Greater New York Chapter Expands Patients Services with
the Introduction of 2 New Support Groups

The Greater New York Chapter is proud to announce the addition of support group services in the Bronx and Queens.

The newly formed support Group in the Bronx will be held at the VA Hospital. Both Veterans and non-veterans, family, and friends are all welcome. The group will be lead by a member of the VA staff and a member of the Greater New York Chapter and will take place on the second Wednesday, monthly from 1-3 PM at the James J. Peters Medical Center at 130 W. Kingsbridge Rd, Bronx, NY 10468.

The Greater New York Chapter will also be holding the first Queens Support Group on June 21st from 6-8 PM at Silvercrest Center for Nursing and Rehabilitation 144-45 87th Ave., Briarwood, NY 11435.  Friends, family and PALS are all welcome to attend.  This support group will be held every third Wednesday
of the month from 6-8 PM. 

Five Boroughs NYC Map

The Greater New York Chapter will also be holding the first Queens Support Group on June 21st from 6-8 PM at Silvercrest Center for Nursing and Rehabilitation 144-45 87th Ave., Briarwood, NY 11435.  Friends, family and PALS are all welcome to attend. This support group will be held every third Wednesday of the month from 6-8 PM. 

For questions regarding the new support groups you can contact Michelle McKenzie at MMcKenzie@als-ny.org or 212.720.3045. 

Hospital for Special Surgery Program Expanding from Half to Full Day Clinic 

The ALS Association Greater New York Chapter and the Hospital for Special Surgery are proud to announce additional clinic sessions at the Association’s Certified Treatment Center. The expansion of services will ensure that more ALS patients in our region have access to comprehensive care. 

We are excited to expand our multidisciplinary care ALS clinic to an additional day. Our clinics strive to provide high quality care, support and information for those living with ALS and their caregivers with the support of the Greater NY Chapter,” Dr. Dale Lange said. 

One clinic will be reserved for new patients, the other for established patients. The current clinic is held on Wednesday afternoons. The additional HSS clinic will be held on Tuesdays at 12:30PM. For more information and/or to schedule an appointment you can call 646.797.8917 or 212.774.2361. 


JUNE SUPPORT GROUP DATES

NASSAU COUNTY, NY
Sunday, June 4th, 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: Traveling with Disabilities
Next month's support group meets: July group is cancelled due to the July 4th holiday weekend

LOWER HUDSON VALLEY, NY
Tuesday, June 6th, 2017 - 6 to 8 pm
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
Topic: Legal Planning in the ALS Community
Speaker: Allen Feller, Esq. of Sloan & Feller Attorneys at Law
Next month's support group meets: July group is cancelled due to the July 4th holiday weekend

SUFFOLK COUNTY, NY
Tuesday, June 6th, 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: Traveling with Disabilities
Next month's support group meets: July group is cancelled due to the July 4th holiday weekend

WESTCHESTER, NY/WHITE PLAINS
Tuesday, June 13th, 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:Legal Planning in the ALS Community
Speaker: Allen Feller, Esq. of Sloan & Feller Attorneys at Law
Next month's support group meets: July 11th, 2017

MANHATTAN,NY
Tuesday, June 20th, 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: Speech & Swallow Technologies in ALS
Speaker: Karen Ball, SLP, Mount Sinai Beth Israel Hospital
Next month's support group meets: July 18th, 2017

JAMES J. PETERS BRONX VA MEDICAL CENTER
* Open To Veterans and Non Veterans *
Wednesday, June 14th, 2017 from 1 to 3 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: Respiratory Management in ALS
Speakers: Bindu Raju, MD and Huguette Charles, RRT (Respiratory Therapist)
Next month's support group meets: July 12th, 2017

QUEENS NY
Wednesday, June 21st, 2017- 1:00 to 3:00 pm
The Silvercrest Center for Nursing and Rehabilitation
144-45 87th Avenue
Briarwood, NY 11435
Contact: Michelle McKenzie, LMSW
(718) 644-1750
Topic: Open Discussion
*Please contact Michelle McKenzie to find out about future support group meeting dates

NORTHERN NJ
Thursday, June 1st, 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: Legal Planning in the ALS Community
Speaker: Shana Siegel, Esq. of WanderPolo & Siegel, Counselors at Law
Next month's support group meets: July 7th, 2017

CENTRAL NJ
Saturday, June 17th, 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: Legal Planning in the ALS Community
Speaker: Shana Siegel, Esq. of WanderPolo & Siegel, Counselors at Law
Next month's support group meets: July 16th, 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. 


Team Sonal Kilimanjaro

NJ Native Plans to Conquer Mount Kilimanjaro
to Conquer ALS

Nirali Shah has never been one to back down from a challenge, and taking on Mount Kilimanjaro, the world’s tallest mountain, is no exception. In honor of her mom, Sonal Shah, who lost her battle to ALS in 2015 Nirali put together an international team to climb to the summit to raise awareness and funds for ALS. 

“My mom lived an extraordinary life, she served as a vital ALS advocate by writing a book about her life and experience with ALS called “My Life, Legacy, and ALS”.  She also travelled to Washington DC many times to join ALSA in pushing for federal legislation and funding for research, and now it is my turn to fight and do what I can to bring attention to this devastating disease,” Nirali said. 

The goal is to raise $19,341 the exact height of Mount Kilimanjaro in feet. Nirali says the climb will last 7 days and she plans to reach the summit on June 25th. This is no easy task given Mount Kilimanjaro is the tallest free standing mountain in the world.

“I’ve been doing a lot of training, but I think a big component of this will be about staying strong mentally throughout the climb,” Nirali said.

Nirali knows her mom will be there in spirit giving her that extra push to make the climb.

“My mom would have loved this. Growing up my parents and I traveled quite a bit and one of the things we always did was go to the national parks and hike there. She always said she wanted to go to Tanzania, but she didn’t make it. So this climb is for her and for all of the people whose lives are cut short by an ALS diagnosis,” Shah said.

You can support Nirali’s Kilimanjaro climb by donating at https://www.crowdrise.com/niralishah5, all proceeds will go to the ALS Association Greater New York Chapter. 


2017 Advocacy Conference

  

The Greater New York Chapter would like thank everyone who participated in the 2017 Advocacy Conference in Washington D.C. This year’s day on the Hill was a great success with PALS, families and advocates attending more than 20 meetings with our local representatives. We are so grateful to our New York and New Jersey Senators and members of Congress who continue to support our cause and join us in the fight for a cure. Thank you again to everyone who helped bring our urgent message to Washington D.C.! We will continue to advocate for our PALS and their families to make sure funding continues for research and patient care.  

2017 Advocacy Day Image3
  PALS, and advocates with Senator Chuck Schumer
2017 Advocacy Day Image1 2017 Advocacy Day Image2

  PALS, and advocates with Representative Peter King

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@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. 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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