One Year Anniversary Column
I have ALS. I am still able to get around fairly well, however, my speech has become increasingly difficult to understand, especially for those unfamiliar with me. I have good hand function, though texting with small buttons on a cell phone is not consistent and writing will obviously not work when communicating via phone. Is there anything that would help me communicate over the phone better?
- Barbara - Putnam County, NY
That is a fairly common question Barbara, particularly for those with the bulbar form of ALS. There are two services that may interest you and could prove very helpful. One is called Speech to Speech and the other is called Hearing Carryover Relay. Both are free phone services. In New York or New Jersey, simply dial 711, and you are connected to an operator who will act as interpreter.
In Speech to Speech, the operator works with the caller to understand what they are saying. The operator then dials the number the caller wants to speak to, and the operator translates for the caller. This call can take some time, but the operators are trained to ask questions of the caller to assist with clarification of what they are saying. In NY or NJ, visit www.speechtospeech.org to learn more.
In a Hearing Carryover call, you would need a TTY connected to your standard home telephone line. A TTY is a phone sized typing device, often associated with the deaf and hearing impaired, that essentially 'texts' over a standard phone line. (There are also ways to set this up on your computer or some cell phones.) You would then type what you want to say to the 711 operator, and the operator would call the person you want to speak with. The person receiving the call is connected directly to you, so you would also hear that part of the conversation. You could then go back and forth with the operator speaking what you type and you hearing the person you're calling. The operator translates everything word for word and all conversations are strictly confidential.
You can also receive phone calls through the same service. Any caller can dial 711, speak to the operator, who would then dial your number so you can use the TTY to 'speak.' There are 800 numbers if the 711 does not work on your phone. To learn more, visit www.nyrelay.com (for New York State residents) or www.njrelay.com (for New Jersey State residents).
As was mentioned, this is my one year anniversary of writing this monthly column. I receive so many questions each week about situations where assistive technology, durable medical equipment, or simple home modifications can significantly and positively impact the lives of people with ALS and their families.
I want to thank everyone who has written or called in with a question over the last year. I hope you find my answers helpful and insightful and that you're able to adapt them to fit your day-to-day lives. I look forward to getting your questions in the year to come and wish you all the best.
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.
ALS Awareness All Year Round
May is ALS Awareness month! Your gift helps us provide vital services to our PALS and caregivers. Your impact can go well beyond May though, and you can commit to donating to the ALS Association Greater New York Chapter each month of the year. Please consider donating monthly to ensure we can continue to work to improve the quality of life for people with ALS throughout May and every day of the year. For more information, please contact Loren Domilici at (212) 720-3060 or visit www.als-ny.org.
J.McLaughlin Shopping Event
Join The ALS Association Greater New York Chapter and J.McLaughlin at their 1311 Madison Avenue store (b/w East 92nd & 93rd Streets) from 6pm to 8pm, on Thursday, May 16th. Enjoy wine & cheese at this in-store event while you shop for classic, American-made, men’s and women’s clothing and accessories. With 15% of proceeds from the evening benefiting our Chapter, start your Summer shopping with confidence that you are supporting a great cause. Click here for your invitation. Contact Regina Ackley at Ackley@als-ny.org or (212) 720-3047 for details.
I Walk Because...
ALS patients, family members and friends tell us why they Walk to Defeat ALS for The ALS Association Greater New York Chapter's "I Walk Because..." campaign. Click here to see some of the "I Walk Because" videos our teams have done with us. Send us your video firstname.lastname@example.org and tell us why you Walk to Defeat ALS.
The Greater NY Chapter welcomes back Diamond Foods, Inc. as a Presenting Sponsor of the 2013 Walk to Defeat ALS Program!
Diamond Foods is an innovative premium snack food and culinary nut company focused on building and energizing brands. We are thrilled to have Diamond Foods as a long-time supporter and are grateful for all they do in the fights against ALS.
The Chapter's relationship with Diamond Foods has been spearheaded by Long Branch Walk Chair and Diamond Foods National Account Manager, Ellen Compesi. Ellen and her family Walk with The Joe Pettinato Team in memory of Ellen's father.
Thank you Ellen and Diamond Foods.
The YPG NYC Walk Team
The ALS Association Greater New York Chapter is proud to have the support and passion of the Young Professional Group (YPG). This group is made up of young professionals, in their 20s and 30s, who have a personal connection with ALS. They host multiple events throughout the year and are dedicated to raising funds and awareness to win the fight against ALS.
The YPG will once again be walking at the New York City Walk to Defeat ALS. They have raised over $100,000 since they first began walking in 2008. We look forward to another great Walk year with the YPG!
If you or someone you know would like to get involved, please contact Loren Domilici or Rebecca Silver Fisher at (212) 619-1400. The next YPG meeting will be on May 22nd. To learn more, visit the website or check them out on Facebook.
Ask the Experts ALS Research Symposium
On April 14th, our Chapter hosted an "Ask the Experts" ALS Research Symposium at the beautiful campus of Cold Spring Harbor Laboratory on Long Island. We were happy to welcome 16 PALS, over 50 more friends and family members, as well as Research Council members to this informative afternoon focused on the latest in ALS research.
Chapter Board Member Kevin Glassman, MD opened the symposium and Dr. Lucie Bruijn, The ALS Association's Chief Scientist, and Dr. Martin Turner from the University of Oxford discussed the importance of biomarkers, stem cell research, and early detection of the disease in helping them better understand ALS and find more effective treatments.
Thank you to everyone who attended! We look forward to hosting another research symposium in the future.
A Cure Begins With You
Become a member of The ALS Association Greater New York Chapter Research Council. The Research Council is an annual giving program that acknowledges the important support of individuals who make gifts of $1,000 or more annually to research.
Members of the Greater New York Chapter Research Council play an important role in funding aggressive, cutting-edge ALS research. This year you can help find a cure for ALS.
For more information, please contact Loren Domilici, Development Manager at (212) 720-3060 or email@example.com.
Tell Your Story
May is ALS Awareness Month and there is no better tool for awareness than telling your ALS story. Take some time out of your day and give voice to that story. Most people know who Lou Gehrig was, but they should also know about the life of your dad, your mom, your sister, your brother, your aunt, uncle or cousin, your neighbor, your colleague, and you.
One of the best ways to make your ALS story known is to write your community newspaper. Call them or go online and see how to submit a Letter to the Editor or an Op-Ed piece. Throughout the Greater New York region, there are a number of online community news outlets, including Patch.com and DNAinfo.com. Look for the neighborhood or town nearest you. Write to the editor and tell them about ALS and how it has impacted you and your family.
For assistance or questions, please contact our Communications Manager Daryl Cochrane and he’ll be happy to help firstname.lastname@example.org or (212) 720-3051. ALS awareness begins with you.
YPG Networking to Defeat ALS
The Greater New York Chapter’s Young Professionals Group hosted their first Networking Happy Hour event on April 23rd at The Ainsworth Lounge in Manhattan. An energetic crowd of nearly 50 young professionals from various career backgrounds attended, all with a mission to defeat ALS . This was a great event for everyone to get to know each other as well as learn more about the Chapter and the upcoming NYC Walk to Defeat ALS. We are looking forward to more of these events throughout the year! Stay tuned.
National ALS Registry
It's been over two years since the National ALS Registry opened through the Centers for Disease Control & Prevention. The federal government continues to make major strides in the Registry, updating questions on the various surveys and informing those with ALS about the tremendous usefulness of this tool. As the third year unfolds, we should begin to see some of the preliminary results from the Registry and get one step closer to finding the causes of the disease and therein ways to treat it and stop it all together.
If you are living with ALS and have not yet enrolled, please do so today. If you have enrolled, but have not completed the full array of surveys, it is important that you do so and provide as much information as possible. Please visit www.cdc.gov/als.
For more information about the registry go to www.als-ny.org or call the Chapter office at (212) 720-3044 and ask for Chris Dunn.
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 email@example.com. If you live in New Jersey contact Debbie Schlossberg at (732) 710-8832 or firstname.lastname@example.org.
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.
The 2013 ALS Advocacy Day & Public Policy Conference will take place May 8-10 in Washington, DC. Registration begins on Monday, February 11th. We hope to see you at Advocacy Day!
If you're interested in joining our advocacy efforts, please contact Daryl Cochrane at email@example.com or (212) 720-3051.
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, please address to: The ALS Association Greater
New York Chapter, 42 Broadway, Suite 1724, New York, NY 10004. Thank you for your generous support.
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