Register For The Next Walk To Defeat ALS Near You

Long Island - Saturday, September 29th | Hudson Valley - Sunday, October 21st

Visit alswalks.org to sign up

Gehrig Farewell

On July 4th our nation celebrates 236 years of independence. But also on July 4th, we in the ALS community recall one of the greatest speeches ever made in sports history. On that day in 1939, just a couple weeks following his diagnosis with ALS, Lou Gehrig took to the field one last time, with tears in his eyes, and told fans that he considered himself “the luckiest man on the face of the earth.”

His example of grace under difficult circumstances and gratitude for friends and family are traits that still resonate today and touch the lives of people with ALS across the globe. In closing that great speech, Gehrig stated, “I may have been given a bad break, but I've got an awful lot to live for.” It is that sentiment that truly makes him “The Iron Horse.”

The 2012 Walk to Defeat ALS Season...
“A Walk in the Park!”

We wrapped up a very successful Spring Walk season with June Walks in both New Jersey and New York. It was all sun and fun on June 3rd where an estimated 1,500 participants joined Walk Chair Kim Single of team Bea Happy for the 8th Annual Saddle Brook Walk to Defeat ALS.

Additionally, the 10th Annual Westchester Walk to Defeat ALS on June 10th was a star-studded affair with former Major League pitching great Tommy John in the pre-Walk line-up along with Honorary Walk Chair, Westchester County Executive Rob Astorino. He was joined by a number of other state and local elected officials. The 10th Anniversary of the Walk caught the attention of News12 as well as Newsday who each provided excellent coverage of the event! Congratulations to our Walk chairs, Fran & Bill Monti and Donna & Mark Rubin.

We broke attendance records at nearly every Walk, raised money, and brought much-needed awareness to our cause.

As we wrap up the Spring Walk Season we would like to extend heartfelt thanks to all of the PALS, families, friends, caregivers, donors, volunteers, and sponsors who participated and helped to make each Walk a tremendous success!

Next up - mark your calendars with the Fall Walk dates! Long Island - Saturday, September 29th & Hudson Valley - Sunday, October 21st. To register, visit www.alswalks.org.

Batter Up

Summer is here which means spending time with family and friends, attending BBQs, and of course, baseball! This July the ALS Association is once again teaming up with Major League Baseball teams nationwide for a month-long ALS awareness and fundraising campaign. ALSA's Covering All the Bases campaign links with MLB's 4♦ALS initiative in a league-wide singular effort to raise awareness and support for the fight against Lou Gehrig's Disease. Your generosity will support compassionate, quality care for those living with ALS, fund cutting-edge research, and advance public policy efforts as we continue to fight for treatment and a cure. AND, as an extra special incentive, every dollar donated will be matched by PostNet International for up to $25,000. Turn that single into a double, that double into a homerun, or hit one all the way out of the park!

Click here or go to the Chapter website between now and July 31st to make your donation. Look for the 4♦ALS and Covering All the Bases logos and be sure to designate the Greater New York Chapter. Whether you're a Yankees fan or a Mets fan, we can all come together to strike out ALS!

For more information, contact Kristen Cocoman, Director of Marketing & Special Events at (212) 720-3048 or cocoman@als-ny.org.

July Support Groups

SUFFOLK COUNTY, NY
Canceled for July
Will next meet Tuesday, August 7th

NASSAU COUNTY, NY
Sunday, July 1st
2 pm to 4 pm
North Shore LIJ - Plainview Hospital
888 Old Country Road, Plainview (Downstairs)
Topic: Open Discussion
Contact: Theresa Imperato, RN,
(516) 946-5467 and Jody Wiesel, PhD
(917) 699-9751

HUDSON VALLEY, NY
Tuesday, July 3rd
6:30 pm to 8:30 pm
Vassar Bros. Medical Mall
Ambulatory Surgery Center
Bldg C, 3rd floor
200 Westage Business Center
Fishkill, NY
Topic: Transferring, lifting, and safety
Speaker: Jeanne Woods, Physical Therapist
from St. Francis Hospital
Massage Therapist Max Cohn will be onsite
donating massages.
Contact: Helen Mayer, RN,
(845) 520-0952

SADDLE BROOK / NORTHERN NJ
Thursday, July 5th
7 pm to 8:30 pm
Kessler Institute for Rehabilitation
300 Market St.
Saddle Brook, NJ
Topic: Overview of Assistive Technology 
Speaker: Ben Lieman, Assistive Technologist,
GNY Chapter
Contact: Debbie Schlossberg, LMSW
(732) 710-8832

MANHATTAN, NY
Tuesday, July 17th
6 pm to 8 pm
Phillips Ambulatory Care Center (Beth Israel)
10 Union Square East
(b/w 14th & 15th streets)
2nd Floor- Conf Room #1
Topic: Open Discussion
Contact: Jody Wiesel, PhD,
(917) 699-9751

NEW BRUNSWICK / CENTRAL NJ
Please Note Temporary Topic and Date Change
Saturday, July 28th
1 pm to 3 pm
Robert Wood Johnson University Hospital
Medical Education Building, Rm. 108A
180 Somerset Street
Follow signs to meeting
Topic: New Patient Group (for newly diagnosed patients/families only.) Regular group is welcome to attend the Saddle Brook meeting this month.
Contact: Debbie Schlossberg, LMSW
and Mary Ann Mertz, RN,
(732) 710-8832

TELEPHONE SUPPORT GROUPS
Caregivers: Fridays - 11am to 12pm
Patients: Fridays - 3pm to 4pm
Contact: Sue Zimmerman at
(212) 720-3050

Note: From June through September, telephone support groups are bi-weekly.

This month's meetings occur on July 6th & 20th.

For more information about our Support Groups go to the Chapter website: www.als-ny.org, Patient Services section or call (212) 619-1400.

Minor League Baseball & MORE Summer Fun!

As the summer heats up, America's pastime is in full swing in ballparks throughout the region. As part of the summer fun, the ALS Association continues to be an official Charity Partner of Minor League Baseball and our local teams in the Greater New York region are on board to help out! Join us for ALS Awareness Days with the Brooklyn Cyclones, Hudson Valley Renegades, and Staten Island Yankees! Thank you to Minor League Baseball for their continued dedication and their shared vision of a world without ALS.

  Check out those and other fun summer happenings the Chapter is hosting here:

  July 2:    Brooklyn Cyclones Game: Military Appreciation & ALS Awareness Days
  July 8:    Cullen’s Crusaders South Shore Long Island Boat Cruise (Walk benefit)
  July 24:  Long Island Walk Kick-Off
  July 26:  Young Professionals Group Summer Networking Cocktail Reception
  July 28:  Hudson Valley Walk Kick-Off
  July 31:  Brooklyn Cyclones Annual Golf Outing to Benefit The GNY Chapter
  Aug. 1:   Brooklyn Cyclones Game: Military Appreciation & ALS Awareness Days
  Aug. 5:   Staten Island Yankees Game: Military Appreciation & ALS Awareness Days
  Aug. 9:   Fifth Annual Carl S. Levine Cocktail Reception
  Aug. 25: Hudson Valley Renegades Game: ALS Awareness Day

For more details on all these events, visit our calendar of events or call the Chapter at (212) 619-1400. Hope to see you this summer!

My voice is still relatively clear, but not as loud. Would a voice amplifier help me communicate better with people?

 - Herb, Bronx, NY

The simple answer is yes, most likely. If you have sufficient breath, and your speech (albeit soft) is understandable this device should help you. To determine the extent of that help, there are two key indicators to identify if a voice amplifier would be useful for you 1) your general clarity of speech; and 2) the effort you exert to speak so others can hear you is too cumbersome for you, yet you are understood when the listener is close to you. Note, a voice amplifier will not alter the clarity of speech, it simply makes the speech you already have louder.

Voice amplifiers are small speakers with a wired microphone attached. The speaker can easily rest in your lap, be strapped to your waist with a belt, or placed near you on a steady surface. A headset or collar microphone is then positioned a few inches from your mouth. This proximity allows the microphone to pick up softly spoken speech and amplifies it through the speaker. There are easy adjustments for volume. Voice amplifiers are especially useful if you are in a setting where there is a lot of ambient sound (i.e. near a busy street or in a restaurant). The entire system is powered by rechargeable batteries so it can be easily used outside of the home.

Be aware however, that your insurance may consider your voice amplifier an augmentative communication device. And while they may pay for the device, it is possible that your insurance will only compensate you for one such device over the course of your illness. You may have difficulty obtaining another, more expensive communications device at a later date, if one is needed, so you may want to consider other options. While the cost of a voice amplifier is relatively low, approximately $100-$200, the Chapter may have them available through the equipment loan program at no cost to you.

I definitely advise anyone interesting in acquiring a speech amplifier to first speak with your Speech Language Pathologist or contact me if you have any questions. Thank you.

- Ben

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.

New ALS Association Program

The ALS Association Greater New York Chapter is proud to announce a new partnership with the Hospital for Special Surgery (HSS), establishing a new ALS Association Program at the hospital. A reception to mark the opening of the ALS Association Program took place at HHS on June 20th.

The ALS Association Program at HSS is located in the Marcia Dunn and Jonathon Sobel Department of Neurology. A multidisciplinary group of health professionals provides patient care. The team is led by the Chairman of Neurology at HHS, Dr. Dale Lange. This team approach and focus on state-of-the-art individualized care, is on the cutting-edge of healthcare today.

“The ALS Association Greater New York Chapter is excited to begin this new collaboration with the Hospital for Special Surgery,” said Dorine Gordon, President & CEO of the Greater New York Chapter. “The ALS Association Program at HSS will provide comprehensive medical and supportive care for patients, not just during medical visits, but throughout the progression of their illness. We are proud to partner with one of nation’s premiere institutions for patient care.”

As part of the new program, the ALS Association Greater New York Chapter, will offer a wide range of services at no cost to patients, including transportation to and from clinic appointments, home visits, support to family and caregivers, as well as full access to the Chapter’s equipment loan program, which provides durable medical equipment and assistive technology. The program will also include significant ALS research and clinical trials.

“The program is geared toward helping patients live more productively and independently,” said Dr. Dale J. Lange, Chairman of Neurology at Hospital for Special Surgery. “Our goal is to provide a coordinated program of medical treatment, rehabilitation techniques and psychological support in a compassionate setting. Comprehensive assessments, diagnostic and follow-up tests, education and treatment are individualized for each patient.”

According to an independent study, research show that patients who receive coordinated, wide-ranging care at a multidisciplinary center live longer with improved quality of life.

For more information on the ALS Association Program at HSS, please contact our Director of Patient Services Adele Marano at (212) 720-3059.

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

.

Over one year ago, the National ALS Registry first began collecting data. In that initial year people living with ALS throughout the country have registered and in doing so provided invaluable information on the effects of the disease as well as figures and statistics which will hopefully pinpoint a cause of ALS, that will lead to an effective treatment or cure. As we move into a New Year, and hopefully a year full of new discoveries in ALS research, every bit of data collected will directly and positively impact that research.

In addition to gathering key demographic information, the National ALS Registry recently added several new features, including components that will help people enroll in clinical trials and locate much needed services in their communities. A biorepository that collects DNA and tissue samples also may be added, and more surveys to explore potential risk factors for ALS are in the works.

The Registry is a powerful tool that has the potential to help find the cause and treatment for ALS. If you want to learn more about the Registry, including how to enroll, click on the image of Lou Gehrig above or go to the ALS Registry website at www.cdc.gov/als.

For more information about the registry go to: www.als-ny.org or call the Chapter office at (212) 619-1400.

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.

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 call Christine Dunn at (212) 720-3044 or email: dunn@als-ny.org for New York, or Debbie Schlossberg at (732) 710-8832 or email: schlossberg@als-ny.org for New Jersey.

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. Call Loren Domilici, Development Manager, at (212) 720-3060 or email ldomilici@als-ny.org   . To mail a donation to: The ALS Association Greater New York Chapter, 42 Broadway, Suite 1724, New York, NY 10004.

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 Daryl Cochrane at dcochrane@als-ny.org or (212) 720-3051.

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.

YPG Summer Networking on the Hudson - Join the YPG for a night of summer fun and networking on the Hudson! Thursday, July 26th, 7:00 - 10:00pm. The boat launches from the North Cove Marina in Battery Park City. Free admission.

For information about the ALS Association's Young Professionals Group and upcoming meetings, please click here.

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.