January 2015 Monthly Update | The ALS Association Greater New York Chapter

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December 2014 Monthly Update from The ALS Association Banner

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A Letter From CEO Dorine Gordon

Dear Greater New York Chapter Supporter,

The New Year is upon us once again and we have great hope to continue the momentum and advance our cause in 2015.

Looking back, 2014 was quite a year for The ALS Association and the Greater New York Chapter. No one could have ever predicted the tremendous success for ALS awareness that would wash over the nation in the form of the ALS Ice Bucket Challenge.

Viral videos took over social media and contributed to unprecedented awareness for Lou Gehrig’s Disease as celebrities, politicians, friends, family and PALS all joined in to help keep the challenge going. Because of this grassroots campaign inspired by the Senerchia, Quinn, and Frates families we reached significant milestones by raising more than $100 million nationally to fund our key mission priorities of Research, Patient Services, and Advocacy. While the amount of money raised is truly remarkable, we also value the visibility and public awareness that ALS is receiving. We have never been in a better position to fuel our fight against this disease.

Our seven Walks to Defeat ALS across the Greater New York region raised over $2.5 million this year with over 16,000 people, 140 PALS and more than 900 family teams, including 175 new teams at our two fall Walks.

Our Chapter’s delegation of advocates from New York and New Jersey travelled to Washington, DC in May for National ALS Advocacy Day and reached out to our local members of Congress to continue the urgent fight to develop effective treatments for ALS.

In November, we celebrated a milestone occasion in our history, the 20th Annual Lou Gehrig Sports Awards Benefit, honoring sports legends Don Mattingly, Franco Harris, and Keith Hernandez. Derek Jeter presented awards to ALS Ice Bucket Challenge founders Pat Quinn and Anthony Senerchia. Our Jacob K. Javits Lifetime Achievement Award was presented to BNY Mellon. Along with a live auction hosted by former New York Giants Howard Cross and a silent auction, the event raised over $1.1 million for patient care services and research.

The Greater New York Chapter recognizes the importance of this year’s events, such as the ALS Ice Bucket Challenge, our local Walks to Defeat ALS, the Lou Gehrig Sports Awards Benefit and our commemoration at Yankee Stadium of the 75th Anniversary of Lou Gehrig’s famous farewell speech, to allow our chapter to sustain patient care services and invest in research.

We are proud to be the recognized leader in ALS patient care. Our chapter provides an unparalleled array of services to more than 775 people living with ALS and their families in our four areas of operation – New York City, Long Island, Westchester County/Hudson Valley, and Northern and Central New Jersey. We offer state of the art clinical treatment through our ALS Association Certified Centers of Excellence – Mt. Sinai Beth Israel Medical Center, Rutgers Robert Wood Johnson Medical School, and Stony Brook University Hospital, as well as our ALS Association Program at the Hospital for Special Surgery, now in its third year of operation.


  • 775 patients and their families received services and support.
  • 458 PALS received care at our ALS Association sponsored treatment centers.
  • Over 200 patients received 683 pieces of equipment from one of our three loan closets.
  • 735 home visits were made to our PALS and their families by our nurses, social workers, and assistive technology specialist.

We are helping more people and we are funding more research thanks to you. While there is still no cure for Lou Gehrig’s disease, we are witnessing advances that move us closer to our vision of a world without ALS.

On behalf of the Board and Staff of The ALS Association Greater New York Chapter, I wish you Happy Holidays and a peaceful New Year.

Sincerely,

Dorine Gordon


January
Support Groups

NASSAU COUNTY, NY
Meeting for January is cancelled
Next month's support group meets: February 1st.

SUFFOLK COUNTY, NY
Tuesday, January 6th
6 to 8 pm
Stony Brook University
Department of Neurology
179 N. Belle Meade Road
East Setauket, NY
Contact: Theresa Imperato, RN, (516) 946-5467 & Cindy Keyser-Posner, LMSW, (631) 416-2767
Topic: New Year’s Resolutions
Next month’s support group meets: February 3rd.

HUDSON VALLEY/FISHKILL, NY
Tuesday, January 6th
6:30 to 8:30 pm
Ambulatory Surgery Center
Building C, 3rd Floor
200 Westage Business Center Fishkill, NY
Contact: Helen Mayer, RN,
(845) 520-0952
Topic: Open Discussion
Next month’s support group meets: February 3rd.

NORTHERN NJ/SADDLE BROOK
Thursday, January 8th
7 to 8:30 pm
Kessler Institute for Rehabilitation
300 Market St., Saddle Brook, NJ
Contact: Debbie Schlossberg, LMSW and Mary Ann Mertz, RN, (732) 710-8832
Topic: Holiday Celebration
Next month’s support group meets: January 8th.

WESTCHESTER, NY/
WHITE PLAINS

Tuesday, January 13th
6 to 8 pm
Burke Rehabilitation Center
785 Mamaroneck Avenue
Building 7 (Patient Dining Room)
White Plains, NY
Contact: Helen Mayer, RN, (845) 520-0952
Topic: Open Discussion
Next month’s support group meets: February 10th.

CENTRAL NJ/NEW BRUNSWICK
Saturday, January 17th
1:30 to 3:30 pm
Robert Wood Johnson
Fitness & Wellness Ctr., Level 2
Community Education Room
100 Kirkpatrick Street
New Brunswick, NJ
Park in the Fitness & Wellness parking deck.
Contact: Debbie Schlossberg, LMSW and Mary Ann Mertz, RN (732) 710-8832
Guest Speaker: Ben Lieman, ATP,ALS Association, Greater New York Chapter
Topic: Assistive Technology
Next month’s support group meets: February 21st.

MANHATTAN, NY
Tuesday, January 20th
6 to 8 pm
Phillips Ambulatory Care Center
(Mt. Sinai Beth Israel)
10 Union Square East
(b/w 14th & 15th Sts.)
Neurology Dept., 5th Floor
Conference Room
Contact: Jody Wiesel, PhD,
(917) 699-9751
Guest speaker: Jeffrey Abrandt,Elder-care attorney
Next month’s support group meets: February 17th.

TELEPHONE SUPPORT GROUPS

Patient group – Meets weekly every Friday from 2:30 to 3:30 pm – alternates between a “talk” group and “mindfulness based stress reduction exercises” (meditation & guided imagery).

Caregivers group – Every Friday from 4 to 5 pm.

If you are interested in either group (patient or caregivers) please call Sue Zimmerman, LCSW at (212) 720-3050.


Volunteers Deliver Thanksgiving Day
Meals to ALS Families

Pictured (L to R): Jenn Tinnelly, PALS Delita Cepeda and Alyssa Estrada.

Greater New York Chapter families received a big reprieve when volunteers delivered baskets of goodies, turkey or ham, veggies, cornbread and pie for a festive Thanksgiving meal. The feast was made possible by the chapter’s Patient Services Department and donations by our Young Professional Group (YPG) so that caregivers of PALS could get a break from cooking on Thanksgiving Day.

Dinners and baskets were delivered by intrepid volunteers despite storms that blew in on Thanksgiving Eve. The baskets filled with cider, treats, paper goods, and more were expertly assembled by Theresa Imperato, RN, Nurse Coordinator and were funded by the Patient Services Department, The YPG and YPG Vice President Brian Swilinski.

The volunteers continued an annual tradition that has been going on since 2005.

Members of the Young Professional Group who delivered the baskets to families in New Jersey, The Bronx, Manhattan, Lower Husdson Valley, Nassau and Suffolk counties, include Brian Swilinski, Charlie Wojcik, Tyler Ashley, Robert Sheppard, Jenn Tinnelly and Alyssa Estrada, YPG President, Amanda Levine, and Joe Lessard. Other volunteers who delivered baskets were Rose Joyce, Phil Hennings, and Chapter Assistive Technology Specialist Ben Lieman, ATP.

YPG President Amanda Levine said that one of the main objectives of the group is to find ways to make life easier for PALS. They saw the Thanksgiving Day meal program as a great way to do that.

“To be able to see the appreciation of the families, and spend time with the families, is really rewarding for us,” Amanda said. “If we can make one day easier for the PALS and their families, we have done our job.”

Chester Hazel’s family was one of the recipients of a Thanksgiving Day dinner and basket. About a year and a half ago, Chester’s mother, Yvonne, was diagnosed with ALS. His father is also ill and Chester, who lives five minutes away from his parents, has become his mother’s primary caregiver. “The dinner was very helpful because I would have tried to prepare something and that would have been difficult to do,” Chester said.

Along with his mom and dad, Chester’s brother, sister, nephew and his father’s home health aide all sat down to the Thanksgiving Day meal together.

“It was nice to have the meal and it was much appreciated,” he said. “And it was more than enough food.”

Click here to donate to The ALS Association Greater New York Chapter’s programs of patient services, research and advocacy.


Ask Ben: Helping PALS Communicate Clearly


My father's speech is becoming more difficult to understand. I can get most of what he is saying but not everything. Is there something that can help him speak more clearly?

- Soli, Morris County, NJ

There are exercises you and your father can discuss with his speech language pathologist. They are not so much about regaining clarity, as techniques to better use the capabilities he does have. For example, speaking slower, or spelling out a word you did not understand.

Though it is a good time to introduce electronic speech output devices, this is not the solution he currently needs. Simpler methods can help him clarify the occasional words you did not understand.

If your father can still write, having a pen and pad of paper nearby will enable him to write the word you did not understand. There are electronic versions of a writing pad, like a Boogie Board, or non-electronic versions like a Magna-doodle, and of course there are drawing apps for a smartphone or tablet like Draw for iPad and Android.

If he is unable to write, having a letter board (simply letters a firm piece of paper or cardboard) makes it easy to point to and spell.

Thought it is difficult to lose the ability to speak, it is still possible to maintain communication.

- Ben

Ben Lieman, ATP, MSW is the Assistive Technology Specialist with the Greater New York Chapter, advising patients and caregivers about medical equipment, home accessibility, and augmentative communications devices. To ask Ben a question, simply email him at blieman@als-ny.org or call at (212) 720-3057. Ben will answer all questions directly as usual, but not all questions will appear in the Monthly Update.


Advocacy Works! Read Two Stories
Below About Recent Legislative Victories.

Greater New York Chapter Advocates on Capitol Hill in 2014.

NJ Tax Return Check-Off Law to Promote Donations to The ALS Association

Legislation to make it easier for New Jersey taxpayers to donate to The ALS Association Greater New York Chapter was signed into law on Dec. 11, 2014 by Governor Chris Christie.

The new law will require income tax returns to include a check box that will allow taxpayers to make voluntary donations to the Greater New York and the Greater Philadelphia Chapters of The ALS Association.

The bill was sponsored by NJ Senators Kevin O’Toole, Paul A. Sarlo, Robert M. Gordon, and NJ Assembly members Troy Singleton, Valerie Vainieri Huttle, Daniel R. Benson, Herb Conaway Jr., Carmelo Garcia, Celeste M. Riley, Gabriela M. Mosquera, and Ralph Caputo. The measure unanimously passed both houses.

Spending Bill Increases ALS Registry Funding; Continues Funding for ALSRP

On Tuesday, Dec. 9, House and Senate leaders reached an agreement to fund most of the federal government through September 2015. Thanks to your outreach throughout the year, the agreement provides $7,820,000 for the National ALS Registry in FY 2015, a more than 30% increase over last year! The agreement also includes $7,500,000 in continued funding for the ALS Research Program (ALSRP) at the Department of Defense, the same level of funding as last year. Moreover, the agreement provides $30 billion for the National Institutes of Health (NIH), $150 million more than last year, and specifically supports funding for ALS research. The bill next heads to the House and Senate and likely will be voted on later this week.

Thank you to everyone who reached out to Congress this year urging them to continue funding for these important programs! Your efforts made a difference. The increased funding for the ALS Registry not only enables the program to continue, but also will allow CDC to establish a biorepository that collects blood and tissue samples and to increase funding for specific ALS research projects. Funding for the ALSRP will provide vital resources for translational research designed to find treatments for ALS.

The spending agreement is an important victory for people with ALS and demonstrates the power of your advocacy. During a year in which Congress did not reach agreement on many issues, they have agreed to increase funding for ALS research and it is clear that your message was heard on Capitol Hill.

Thank you to everyone who joined us in advocating! If you’re interested in joining our advocacy efforts, please contact John Nolan at (212) 720-3051 or jnolan@als-ny.org.


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 aloud.

If you live in New York please contact Christine Dunn at (212) 720- 3044 or dunn@als-ny.org. If you live in New Jersey contact Debbie Schlossberg at (732) 710-8832 or schlossberg@als-ny.org.

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.

For information 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, please click here.

Información en Español

The Greater New York Chapter website now has information on ALS and Chapter services in Spanish.  If you know someone with ALS who may need information in Spanish, please refer them to www.als-ny.org/espanol.


MAKE A DIFFERENCE

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 John Nolan at (212) 720-3051 or jnolan@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 video 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 gift to find a cure and fund life saving research and to provide much needed equipment and services. To make a donation online, please click here or contact John Nolan at (212) 720-3051 or jnolan@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.

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 many social media websites: Facebook | Twitter | ALS Blog | YouTube | LinkedIn. Find our Walk to Defeat ALS department on social media too: Walk Facebook Page | Walk Twitter.

Learn more:  Research | Blog | How to Help 


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