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

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February 2015 Monthly Update from The ALS Association Banner

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Save The Dates!

The 2015 Walk to Defeat ALS
Season is Almost Here!

New York City, NY -   Saturday, May 2
Long Branch, NJ -   Sunday, May 17
Saddle Brook, NJ -   Sunday, May 31
Westchester, NY -   Sunday, June 14
Somerset, NJ -   Saturday, June 20
Long Island, NY -   Saturday, Sept. 19
Hudson Valley, NY -   Sunday, Oct. 18

www.ALSWalks.org

Registration Opens Feb. 1

Statement From Our National
Office About Genervon's GM6

The ALS Association truly understands the urgency and desire to make GM6 publicly available. We have reached out to Genervon along with the principal investigators of the study to gather more information about GM6. Those conversations are ongoing.

At this time, not all data from the company’s clinical trial has been made available to The ALS Association or the greater ALS community. What we do know is that the study that has been publicly reported on was a small feasibility study (eight people, four controls over a two week time period) for safety and not designed to test whether there would be any benefit. This can only be determined in a larger study together with a good biomarker plan and we have encouraged Genervon to apply for funding through our phase II clinical trial program.

The Association is committed to working with all parties—Genervon, the FDA, the principal investigators and people with ALS—to advance the development of this potential treatment. Only through collaboration and cooperation will we be able to change the course of this disease.


ALS Association-Supported Study Shows Parkinson’s Disease Gene Targets Brain Motor Neurons

Loss of a gene linked to Parkinson’s disease (PD) exposes motor neurons in the brain to increased stress and leads to neurodegeneration, according to a study supported by The ALS Association. The study is published in the journal Cerebral Cortex.

Mutations in the gene, called UCHL1, were first identified as a rare cause of PD and more recently in a non-PD syndrome characterized by loss of upper motor neurons. Upper motor neurons, which link the brain and spinal cord, are also lost in ALS. To better understand the normal role of the gene, researchers developed mice lacking any UCHL1 function. They found that the absence of UCHL1 protein caused selective vulnerability of upper motor neurons. Degeneration of these neurons was accompanied by signs of stress in part of the cell’s protein quality control system, called the endoplasmic reticulum (ER), suggesting that this may contribute to development of the disease.

“These findings emphasize the importance of the ER in motor neuron health,” said Lucie Bruijn, Ph.D., M.B.A., Chief Scientist for The ALS Association. “While UCHL1 itself is not known to be a direct cause of ALS, exploring how it causes degeneration of the brain’s motor neurons is likely to shed light on the same process in ALS.”

The new mouse model will help unravel the molecular mechanisms of brain motor neuron vulnerability and may be useful for testing compounds to improve brain motor neuron health.

The research was performed by 2010 Milton Safenowitz fellow Javier Jara, Ph.D., and Baris Genc, Ph.D., under the direction of Hande Ozdinler, Ph.D., both of Northwestern University in Chicago, Ill.


Upcoming Events

Friday, Feb. 27 - 9th Annual Big Ed Event from 6-10 pm at Hudson Station, (9th Avenue and 35th Street). Tickets are $60. For more info visit http://webgny.alsa.org/goto/biged or email: bigedbenefit@yahoo.com.

Save the Date - Saturday, March 14 - Symposium on ALS with The ALS Association Greater New York Chapter and the Hospital for Special Surgery's Department of Neurology. For more information please visit our website or contact John Nolan at (212) 720-3051 or jnolan@als-ny.org.

Save the Date - Sunday, May 10 - Tuesday, May 12 - National ALS Advocacy Day and Public Policy Conference. Click here to sign up to become an advocate.

February
Support Groups

NASSAU COUNTY, NY
Sunday, Feb. 1st - 2 to 4 pm
North Shore LIJ - Plainview Hospital
888 Old Country Road
Plainview - Downstairs
Contact: Theresa Imperato, RN, (516) 946-5467 & Cindy Keyser-Posner, LMSW, (631) 416-2767
Topic: Open discussion
Next support group: March 1st.

SUFFOLK COUNTY, NY
Tues., Feb. 3rd - 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: Open discussion
Next support group: March 3rd.

HUDSON VALLEY/FISHKILL, NY
Tues., Feb. 3rd - 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 support group: March 3rd.

NORTHERN NJ/SADDLE BROOK
Thurs., Feb. 5th - 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: Open Discussion
Next support group: March 5th.

WESTCHESTER, NY/
WHITE PLAINS

Tues., Feb. 10th - 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 support group: March 10th.

MANHATTAN, NY
Tues., Feb. 17th - 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 speakers:
1. Special presentation by ALS patient Eliseo (Eddie) Ilaraza
2. Kristen Cocoman, GNY Chapter will speak about Walk to Defeat ALS
Next support group: March 17th.

CENTRAL NJ/NEW BRUNSWICK
Saturday, Feb. 21st
1:30 to 3:30 pm
Robert Wood Johnson
Fitness & Wellness Ctr., Level 2
Community Education Room
100 Kirkpatrick Street
New Brunswick, NJ
Fitness & Wellness parking deck.
Contact: Debbie Schlossberg, LMSW & Mary Ann Mertz, RN
(732) 710-8832
Guest speaker: Sarah Pattison, GNY Chapter
Topic: Walk to Defeat ALS
Next support group: March 21st.

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.


Ask Ben: Wheelchairs For Head And Neck Support


My father has ALS and is having difficulty holding his head up. His neck muscles are weakening and his chin is often on his chest. Is there anything we can get for the wheelchair to hold his head up?

- Sarah, Dutchess County

Standard wheelchairs or transport wheelchairs depend on our ability to keep our back, neck, and head at 90 degrees. They have a low back and offer no head support. The neck muscles do the work to keep our head balanced. As those muscles lose strength, the head begins to lean down. Seat belts should always be worn, and other side and back supports should be considered, as upper body control diminishes. A headrest can only provide support on one side, leaving the head to lean the other way.

There are however, special wheelchairs with high backs and head rests, that lean back. When a person sitting in this type of wheelchair leans back, their head is supported, diminishing the dependence on neck muscles.

As the name implies, in reclining high back wheelchairs, the back of the chair recline back, while the seat remains in a horizontal position. This also allows for stretching out the muscles in the back, legs and pelvis area, but can create a slight “sliding forward” sensation so you need to be careful of pressure sores.

In a tilting wheelchair, both the back and seat of the chair lean back in unison, maintaining a 90-degree angle. A person is “nestled” in the chair, as it tilts back. This reduces downward pressure. The pressure from sitting is divided between the buttocks and the back.

Tilting and reclining capabilities are found in both manual and powered wheelchairs.

You should speak with your Occupational Therapist or Physical Therapist to discuss issues of keeping your head up. Ask them if they think that a tilting or reclining wheelchair might help. We occasionally have these types of chairs in our loan closet.

- 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.


Importance of Oral Care For PALS

By Kim H. Paticoff-Wolf, D.D.S.

While the progressive symptoms of ALS may make oral care challenging, there are products available for ALS patients that can ease mouth care and lessen the chance of developing oral health problems. How does ALS impact oral care? Physical changes that occur with ALS can make it difficult to keep the mouth clean. These physical changes may include the functioning of the hands, arms, mouth, lips, cheeks, tongue, and swallowing muscles, and alterations in mobility and breathing.

For example, if you are not swallowing your saliva, it tends to pool and accumulate in the mouth. When saliva pools in the mouth, plaque, a sticky film on the teeth, builds up and bacteria grows. This buildup of plaque causes dental caries (cavities), gum disease, and bad breath. Another potential complication from ALS is dry mouth due to mouth breathing, BIPAP use, and/or certain medications.

Daily dental hygiene must not be ignored. Brushing, with a soft-bristled toothbrush and fluoride toothpaste should be done at least twice per day (once in the morning after waking up) and once in the evening before bed. This is done to prevent plaque from accumulating and to remove bacteria.

Replace your toothbrush every three to four months or after a cold. Floss between the teeth once a day to remove food and plaque that the toothbrush cannot reach. Rinse the mouth with an anti-bacterial rinse or add moisture to the mouth with a swab. If wearing dentures, take them out and soak them overnight. If weight loss has occurred, they may not fit as snug and instead cause gum or cheek irritations. Get regular checkups at the dentist (every six months) for examinations and cleanings.

There are numerous readily available products that can aid an ALS patient in maintaining proper oral care. For example, there are moisturizing agents such as Biotene moisture drops, Biotene anti-bacterial rinse, Biotene toothpaste, and a toothette (small sponge on a plastic stick for moisture relief).

Other products that may be useful are tongue scrapers/cleaners (to remove buildup of bacteria on the tongue), and modified grips on toothbrushes such as a racquet ball or tennis ball which fits over the end of the brush handle or Styrofoam tubing which fits over the handle of regular toothbrushes or floss threaders. There are also toothpaste dispensers (so you don’t have to squeeze paste from the tube), floss holders (“Y” & “F” shaped), electric toothbrushes which eliminate the need for extensive arm action and have large handles for easier gripping, a Proxabrush (for cleaning open spaces between the teeth or under fixed appliances such as bridges), an oral irrigator such as a Waterpik, and suction toothbrushes such as Plaq-Vak toothbrushes (helpful if swallowing cannot be done because water and toothpaste may be removed from the teeth while brushing).

To read the rest of this article, please click here.


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, 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 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.

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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