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

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April 2017

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Janet Palkewick is defying the odds, living with ALS for nearly 27 years. She was diagnosed in 1989 while pregnant with her fourth child. When she hit the 20 year mark, she decided it was time to join the larger fight to end ALS. 

“I realized I was still living for a purpose. I decided it was time to get more involved with finding a cure,” Janet said.

Which is why Janet decided to become an ALS advocate. She will be heading to Capitol Hill with The ALS Association for the 8th time this May for our Public Policy and Advocacy Conference along with her children and grandchildren. This important conference includes a day of lobbying elected officials on Capitol Hill.

““Having 7 years of experience, I’m very comfortable speaking about ALS and asking for the needed funding. Is it worth the time, expense, being drained both physically and emotionally? A great big YES,” Janet said. “I feel accomplished, I was heard. I made a difference.”

Janet admits sharing her story with lawmakers can be difficult but says the lawmakers have always been receptive.

I have never had a bad meeting. The lawmakers or their aides have listened with genuine interest and concern. It is very important for lawmakers to understand that ALS does in fact affect the whole family. We need to show the personal side of ALS, put a face on the disease. Sometimes it gets very emotional; there are lots of tears. But that’s okay, it’s making ALS real,” Janet said.

Staying motivated and positive isn’t always easy, but Janet says the progress she has seen since her diagnosis keeps her motivated.

“More has been accomplished toward finding an ALS cure in the last 10 years than the previous 70 years. Actually, since my diagnosis 27 years ago, the most headway has been made in the last 5 years. I am hopeful! I must remain hopeful that there will be a cure in my lifetime,” Janet said.

“One of the bills our advocates will be talking to lawmakers about in May, would eliminate the 5 month waiting period for disability insurance for people diagnosed with ALS. Janet says it's important for everyone to speak up on this issue, even if you are not directly affected by ALS.

When there is an issue to be addressed, I not only send my letter, I also ask others to do likewise. Advocacy is not limited to PALS and family, anyone can be an ALS Advocate. I am a firm believer in fundraising and advocating all year long. After all, PALS and their families need help all through the year,” Janet said.

Advocacy week will be held from May 14th – May 16th. To join the Greater New York Chapter delegation or to find out more about how you can get involved head to our website at als-ny.org or call Wendy DuBoff at 212-720-3054.


 2017 Walk Dates

New York CitySat., May 6, 2017  

Jersey ShoreSun., May 21, 2017 

North JerseySun., June 4, 2017  

Westchester, NY Sun., June 25, 2017

Long IslandSat., Sept. 16, 2017 

Central JerseySat., Oct. 7, 2017 

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

NYC Walk Image 2016


APRIL SUPPORT GROUP DATES

NASSAU COUNTY, NY
Sunday, Apr. 2nd, 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: ALS Advocacy / Open Discussion
Next month's support group meets: May 7th, 2017

LOWER HUDSON VALLEY, NY
Tuesday, Apr. 4th, 2017 - 6 to 8 pm
Ambulatory Surgery Center Bldg. C, 1st 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: ALS Advocacy / Open Discussion
Next month's support group meets: May 2nd, 2017

SUFFOLK COUNTY, NY
Tuesday, Apr. 4th, 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: ALS Advocacy / Open Discussion
Next month's support group meets: May 2nd, 2017

WESTCHESTER, NY/WHITE PLAINS
Tuesday, Apr. 11th, 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: ALS Advocacy / Walk to Defeat ALS Events
Speaker: Brett Murphy, Development Manager, ALS Association Greater New York Chapter
Next month's support group meets: May 9th, 2017

MANHATTAN,NY
Tuesday, Apr. 18th, 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: ALS Advocacy / Open Discussion
Next month's support group meets: May 16th, 2017

NORTHERN NJ
Thursday, Apr. 6th, 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: ALS Advocacy / Lifeline Communications Program
Speaker: Eileen Amoroso, Education Coordinator, Philips Lifeline

Next month's support group meets: May 4th, 2017

CENTRAL NJ
**Saturday, Apr. 18th, 2017- 1:30 to 3:30 pm**
**Date Change Due to Easter **
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: ALS Advocacy / Lifeline Communications Program Speaker: Eileen Amoroso, Education Coordinator, Philips Lifeline
Next month's support group meets: May 20th, 2017

JAMES J. PETERS BRONX VA MEDICAL CENTER
* Open To Veterans and Non Veterans *
Wednesday, Apr. 12th, 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
Topics: ALS Advocacy / Open Discussion
Next month's support group meets: May 10th, 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 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 Young Professionals Group of the ALS Association Greater New York Chapter held a fitness fundraiser on March 19th. They raised money to support their missions of supporting ALS research and providing patient services to the Greater New York area ALS community.

Trainer Caroline Moles led the class in a vigorous workout session that was a great way to start a brisk Sunday!

Coming up on April 12th, join the YPG at Alex + Ani at 425 West Broadway from 6pm – 8pm for a great fundraiser!

Pick up an Alex + Ani bracelet (or three!) and help support the YPG and ALS Association Greater New York Chapter.

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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