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
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 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 firstname.lastname@example.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 email@example.com.
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 firstname.lastname@example.org. If you live in New Jersey contact Debbie Schlossberg at (732) 710-8832 or email@example.com.
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 firstname.lastname@example.org.
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
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 email@example.com.
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: firstname.lastname@example.org.
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 email@example.com. 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.
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