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.
To ask Ben a question, simply email him at email@example.com 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.
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
National ALS Registry
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.
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
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: firstname.lastname@example.org for New York, or Debbie Schlossberg at (732) 710-8832 or email: email@example.com 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
firstname.lastname@example.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 email@example.com or (212) 720-3051.
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.
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.
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