|Saturday, May 3
New York City, NY
|Sunday, May 18
Long Branch, NJ
|Sunday, June 8
Saddle Brook, NJ
|Saturday, June 14
|Saturday, June 21
|Saturday, Sept. 20
Long Island, NY
||Sunday, Oct. 19
Hudson Valley, NY
Registration for the 2014 Walk to Defeat ALS season is now open!
Visit www.ALSWALKS.org to register for a Walk near you this year!
The countdown to the first Walk to defeat ALS of the 2014 season is on!
Join us for the New York City Walk on Saturday, May 3rd at Hudson River Park’s Pier 45. For more information or to find a Walk near you, log on to WWW.ALSWALKS.ORG
Team ALS Joins the 2014 TCS New York City Marathon as a Bronze Partner!
Applications now being accepted to run with Team ALS in the 2014 TCS New York City Marathon! For information on securing a spot the Marathon and other races throughout the year, contact: Kristen Cocoman, Director of Marketing & Special Events at firstname.lastname@example.org or (212) 720-3048. Reserve Your Spot Now!
Why not turn it into something positive by using your return to help out others. Your generous support can provide PALS with much needed services and medical equipment to help them maintain an independent and communicative life. For more information, please contact Loren Domilici at (212) 720-3060 or visit www.als-ny.org.
Ask Ben: Options For Voice Banking
My mother was recently diagnosed with ALS. She is still able to speak, but you can see from slight changes in her walking that the ALS is beginning to affect her. Even her speech, though fully understandable is slightly different. We would like to record her voice for a time when she may no longer be able to be understood. Is voice banking the best way to do that?
— Annie, Middlesex, NJ
Before discussing what's best, let's clarify some terminology. Augmentative Communication devices typically use a computer generated voice. Male, Female, even children’s voices are available. The quality of these voices have improved immensely over the years. Voice banking is the process of storing one’s own voice. So when an augmentative communication device is used, the voice you hear is the voice of the person who previously recorded their voice.
There are two voice banking options. One is recording your voice outright. 'How are you', 'Let's go to the park', 'lift my leg, please'. You would anticipate the messages, names, phrases, you want stored, and record each one. This is considered Digitized Speech. The 2nd Voice banking option is Synthesized Speech. You create a computer file of all the sounds your voice makes from the alphabet and combinations of letters. These sounds then are 'synthesized' (by a computer program) to form words, using each sound from your voice.
For the outright recording, digitized speech, words and phrases are recorded on a computer, and saved as a .wav or .mp3 file. You then can program each file to a specific location on the screen of a computer, and you have created a touch screen with multiple .wav or .mp3 recordings. One screen can store and play multiple recordings. This is an easier way to go. Simply record the words and phrases you want over time. The limitation is that it is not a natural way of communicating. Our language is complex and we constantly interject unique words and phrases.
Sound Recorder on Windows is a simple way to store your own recordings.
Audacity is a more complex program for recording words and phrases.
The Synthesized method takes more time. ModelTalker is the primary program used to create one’s own voice file. It request 4-6 hours of speaking specified sentences into the computer. The program then creates a voice file that can be used on some augmentative communication devices. The versatility of this method is that anything you spell on the device, pre-programmed or unique is now spoken with the voice sounds of the person.
What’s best? It’s really up to you. Know that the communication devices as they come now have very understandable and good quality voices. If it is important to have a device use your own voice, look into ModelTalker. That will give you the most versatility. If you are not up for several hours of recording, use the digitized recording methods and identify specific phrases you want to record.
Please contact me with any questions about voice banking or augmentative 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 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.
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.
The next general meeting of the Young Professionals Group will be Thursday, April 24th at 6:30pm. For information please email firstname.lastname@example.org.
For information about the ALS Association's Young Professionals Group, please click here or contact Loren Domilici at email@example.com or (212) 720-3060.
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 Loren Domilici at (212) 720-3060 or firstname.lastname@example.org.
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 or learn how you can help people with ALS. You can also call Christine Dunn at (212) 720-3044 or email: email@example.com for New York, or Debbie Schlossberg at (732) 710-8832 or email: firstname.lastname@example.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 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.
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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