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


ALS Banner - Fighting on every front to improve living with ALS.

November 2015

[donate now] [register] [contact us] [tell a friend] [visit our website]
Icon Facebook Icon Twitter Icon Linkedin Icon Instagram Icon Youtube
 

Honoring CALS During
National Caregivers Month

Caregivers of ALS patients (often called CALS) are the unsung heroes of the ALS community. Oftentimes the work of family members or friends who tend to the health and comfort of a person with ALS (PALS) is greatly underestimated. A 2015 study by the National Alliance for Caregiving (NAC) found that caregivers spend on average about 24 hours a week providing care to a loved one and almost a quarter provide 41 or more hours of care per week. The NAC also estimated the cost of services provided by family caregivers at $375 billion a year, twice as much as real dollars spent on homecare and nursing home services combined ($158 billion). At the Chapter, we know that caregivers are priceless and at times they need a little TLC of their own.

PALS Janet Palkewick is in her 29th year with PLS, a related condition to ALS. “She has an amazing family who has cared for her for all these years,” said Debbie Schlossberg, LMSW, Patient Services Coordinator in New Jersey. “Janet lives with her daughter Elisabeth and her family. Not only does Elisabeth help out but Janet’s sons and four grandchildren pitch in every day as well.”

Elisabeth says the best coping advice she can give to CALS is to remember to take some time for yourself. “To be the best possible CALS to our PALS, we need to care for our own emotional and physical state,” she said. “Cry if you need to, shout if you need to, eat an extra scoop of ice cream if you need to. Just take care of yourself because you are no good to your PALS if you are run down and worn out.” As a caregiver, she said don’t go it alone; reach out to others when you need something. “It takes a village. Don't be afraid to ask for help. People need specific directions and nine times out of ten they want to help but don't know how. Just ask.”

Elisabeth also said that communication with doctors and insurance companies is key, especially knowing what paperwork needs to be filled out on behalf of your PALS. “This will clear up any privacy laws and it is easier to get these papers taken care of while your PALS has a clear voice,” she said.

Rose Coleman’s daughter Debbie Ruggiero is a longtime patient at the chapter’s ALSA Certified Treatment Center of Excellence at Rutgers Robert Wood Johnson Medical School. Rose said she will go above and beyond for her daughter but having a routine is one of the most important things to her as a CALS. “I could never go without a routine,” she said. “Everybody finds their own way of doing things. I have my own.” She also says that having a Home Health Aide come in for a few hours every day helps give her a little break.

According to Tracy Sandy-Ali, BA, CCRC, LPN, the chapter’s Intake and Support Program Manager, caregiver-focused support groups and seminars draw some of the biggest attendance numbers when compared to other similar types of groups. “So there is the need for dedicated support forums for caregivers,” she said.

Elisabeth said she finds the chapter’s monthly support groups very helpful for both PALS and CALS. “ It gives CALS the opportunity to share like experiences and help one another when we need a lift,” she said. “Caring for your PALS is the most rewarding gift you could give them. This is also the most precious gift you can give yourself.”

The ALS Association Greater New York Chapter’s November support groups will highlight Caregiver needs. The chapter also offers weekly telephone support groups for caregivers every Friday from 4 to 5 pm. Contact: Sue Zimmerman, LCSW at (212) 720-3050 for more info.

Go to www.als-ny.org for further details on monthly support groups meeting places and times.


PALS Pushes For NJ Law
Promoting ALS Awareness

New Jersey Governor Chris Christie recently signed a bill into law that designates May as “ALS Awareness Month” thanks in large part to the efforts of PALS Sonal Shah, an active ALS advocate and author of “My Life, Legacy and ALS,” an autobiographical look at her life as a person living with ALS.

Gov. Christie sent an official letter to Sonal congratulating her for bringing awareness of ALS to the residents of New Jersey. “Your tireless efforts to share your story and participation in many events supporting ALS surely have touched many lives,” he wrote. “You have set an example of selflessness for others to follow, and I applaud your activism for such a worthy cause.” Gov. Christie thanked Sonal for her bravery, compassion and courage.

We are proud of Sonal’s unwavering dedication to the cause of PALS in New Jersey and nationwide through continued activism and advocacy. We also thank Gov. Christie and the New Jersey State legislature for passing this resolution, which will surely help to increase awareness of the many life challenges facing ALS patients locally and beyond.


November Support Groups

NASSAU COUNTY, NY
Sunday, Nov. 1st - 2:00 to 4:00pm
North Shore LIJ - Plainview Hospital
888 Old Country Road
Plainview, NY 11803
(Downstairs)
Contacts: : Cindy Keyser-Posner, LMSW, (631) 416-2767
Theresa Imperato, RN,
(516) 946-5467
Topic: National Caregivers Month/Open Discussion
Next support group: Dec. 6th

SUFFOLK COUNTY, NY
Tuesday, Nov. 3rd - 6:00 to 8:00 pm Stony Brook University,
Dept. of Neurology
179 N. Belle Meade Road
East Setauket, NY 11733
Contacts: : Cindy Keyser-Posner, LMSW, (631) 416-2767
Theresa Imperato, RN,
(516) 946-5467
Topic: National Caregivers Month/Open Discussion
Next support group: Dec. 1st

HUDSON VALLEY/FISHKILL, NY
Tuesday, Nov. 3rd - 6:00 to 8:00 pm
Ambulatory Surgery Center
Building C, 1st Floor, Suite 130
200 Westage Business Center
Fishkill, NY 12524
Contacts: Helen Mayer, RN,
(845) 520-0952
Nancy Brenner, LCSW,
(914) 406-3513
Topic: National Caregivers Month/Open Discussion
Next support group: Dec. 1st

WESTCHESTER, NY/WHITE PLAINS
Tuesday, Nov. 10th - 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: National Caregivers Month/Open Discussion
Next support group: Dec. 15th

MANHATTAN, NY
Tuesday, Nov. 17th - 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 Department
5th Floor Conference Room
Contact: Jody Wiesel, PhD,
(917) 699-9751
Topic: National Caregivers Month/Open Discussion
Next support group: Dec. 15th

NORTHERN NJ/SADDLE BROOK
Thursday, Nov. 5th - 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: National Caregivers Month/Open Discussion
Next support group: Dec. 3rd

CENTRAL NJ/NEW BRUNSWICK
Saturday, Nov. 21st - 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: National Caregivers Month/ Open Discussion
Next support group: Dec. 19th

TELEPHONE SUPPORT GROUPS
Patient group:
Every Friday - 2:30 to 3:30 pm
Caregivers group:
Every Friday - 4 to 5 pm
Topics include: Open discussions or Meditation and Guided Imagery for Stress Reduction.
Contact: Sue Zimmerman, LCSW, (212) 720-3050

National ALS Registry Grows Into Powerful Research Tool

It’s been seven years since the ALS Registry Act was signed into law establishing the first ever national patient registry for people living with ALS. The National ALS Registry web portal opened in 2010 and since that time, the registry has grown to become a powerful tool that not only collects vital information about the disease, including risk factors, but also is helping to advance ALS research.

  • Seventeen risk factor modules are now available that enable people with ALS to provide information that may help researchers identify the causes of ALS.
  • The registry program has funded ten external projects examining issues from the potential causes of ALS to caregiver responsibilities.
  • The registry’s research notification tool is expediting and facilitating enrollment in research studies and clinical trials. To date, more than 70,000 emails have been sent to people with ALS concerning nearly 20 different ALS research studies and clinical trials for which they may qualify.
  • The National ALS Biorepository has been created to collect blood and tissue samples and associate those samples with the risk factor and other information collected by the registry. People with ALS can contribute samples without having to travel to a center or clinic as health professionals collect samples through home visits.
  • More than 80 papers, abstracts, poster presentations and other publications related to the registry have been released, ranging from incidence and prevalence of the disease in specific states and metropolitan areas to the effects that demographic factors have on survival time.

People living with ALS 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 assistance in enrolling in the National ALS Registry, contact Christine Dunn in the Chapter office at (212) 720-3044 or dunn@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. Contact Christine Dunn at (212) 720- 3044 or dunn@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, contact Sarah Pattison at (212) 20-3042 or spattison@als-ny.org. Visit the YPG website here.


#Challenge ALS

Help Create A World Without ALS. 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 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 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 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.

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 


To unsubscribe to this newsletter change your email preferences: click here.