Social Media – Making Connections Through Technology

A primer on social media.

By: Alisa Brownlee

We are a society that is now connected through Facebook, Twitter and other media sites, which can be accessed through phones, computers, tablets, and other devices. It’s a part of our world, and many people with ALS want to remain connected and may want to share their journey with others and find other people with this diagnosis for friendship and support.

As a by-product of ALS, many people are more socially isolated. People find going out more difficult or virtually impossible. Getting out can also be burdensome to a caregiver. Consequently, many choose to stay at home and frequently connect with others on the Internet. Even those who cannot speak find connecting through texting, emailing, or posting on Facebook or Twitter an excellent way to share their thoughts.

In one day on the Internet:

• 294 billion emails are sent
• 2 million blog posts are written (enough to fill TIME magazine for 770 million years)
• 172 million people visit Facebook
• 40 million visit Twitter
• 22 million visit LinkedIn
• 20 million visit Google+
• 17 million visit Pinterest
• 4.7 billion minutes are spent on Facebook
• 532 million statuses are updated
• 250 million photos are uploaded
• 22 million hours of TV and movies are watched on Netflix
• 864,000 hours of video are uploaded to YouTube
• More than 35 million apps are downloaded
• More iPhones are sold than people are born

*Source: The Social Skinny

Twitter, Facebook, You Tube, LinkedIn, Pinterest, Google+ and other sites have given users a format to share moments of their lives, highlight important subjects, show pictures and advocate for an important cause. Social media also enables people to connect with others in a format that was not possible in the past.

Launched in 2004, Facebook is a social network site that requires users to register before using the site. After which, they may create a personal profile, add other users as friends, and exchange messages, including automatic notifications when they update their profile. Users may join common-interest user groups, organized by workplace, school, church, etc. They can categorize friends into lists such as “People from Work” or “Close Friends.” Anyone on Facebook can connect with other people with ALS by searching for “The ALS Association,” “ALS,” “MND,” or “Lou Gehrig’s Disease.” Another approach is to “friend” The ALS Association Greater New York Chapter by clicking here to get event information, care services notices, public policy updates and research news.

Twitter is an online social networking and microblogging service that enables users to send and read text-based posts of up to 140 characters, known as “tweets.” It was created in March 2006 and has gained tremendous popularity. One way to enhance your Twitter experience is to use hash tags. This means that one places the number sign in the search box before a word or phrase, such as #ALS, #MND, #Lou Gehrig’s Disease. The ALS Association and many chapters have Twitter feeds. User IDs are identified by using “@” and the name, such as The ALS Association Greater New York Chapter: @ALSofGNY and The Walk to Defeat ALS: @walktodefeatals

Pinterest is a pinboard-style social photo sharing website. This service allows users to create and manage theme-based image collections. The site’s mission statement is to “connect everyone in the world through the things they find interesting.”

YouTube is a video-sharing website, created in 2005, where users can upload, view and share videos. You Tube has a variety of user-generated video content including movie clips, TV clips, and music videos, as well as amateur content such as video blogging and short original videos. Most of the content on YouTube has been uploaded by individuals, although media corporations including CBS, BBC, VEVO, Hulu, and other organizations offer some of their material as part of the YouTube “partnership program.” The ALS Association and chapters often upload videos about ALS, public service announcements, and other ALS-related information. You can find this by doing a search for “ALS Association Greater New York Chapter” or “ALS.” There are fantastic videos showing people with ALS using assistive technology and communication devices, which may prove useful for people who need to understand this technology.

Many people have personal blogs that enable a user to post thoughts, pictures, news articles, and other information. Blogs are free and are offered on such sites as Blogspot and WordPress. In addition, Tumblr is a micro blogging site that bridges the gap between twitter and blogging.

Click here to head over to the ALS Association Greater New York Chapter’s homepage and scroll down to find out where you can connect with us on social media.

For more information about communicating online, click here.

AMP UP YOUR GIVING: Technology Edition

Through the generosity of numerous donors, our Chapter is able to provide our PALS with a wide array of equipment to help them maintain their independence, sustain mobility, and have the ability to communicate throughout the progression of the disease. Your gift, no matter the amount, can go a long way in helping us continue this important work for our region’s PALS. Here is some of what your gift can provide:

• $50 – Switches can give patients who have lost their ability to press on various communication devices access to an entire communication screen with one easy motion.

• $150 – Communication Device Batteries allows our patients to be mobile and still maintain their communication. Communication systems can work while plugged in, but they become portable with the use of these batteries, fostering independence for patients and greater ease for caregivers.

• $250 – A Voice Amplifier increases the volume of a patient with weakened or softened speech, so listeners can remain in a typical conversation space instead of staying extremely close to hear the speaker.

• $350 – Wheelchair Batteries last about two years and provide one of the key components for a device that is critical to the movement of PALS. A power wheelchair cannot be used without a working battery, so this basic part of the wheelchair is one that is greatly needed for the Chapter.

Donate today to ensure we can continue to provide the highest quality of care to all our PALS and continue to provide the state-of-the-art equipment at no cost!

To donate or for more information, contact Loren Domilici, Development Manager at (212) 720-3060 or


Blog Your Way To Better Mental Health

by Josh Sternberg

We live in a technological age where medicine and information about our health are helping us live longer lives. However, there is only so much technology can do for neurological diseases like ALS. Those afflicted with the illness – and other neurological diseases – will at some point lose the ability to perform some of the most basic physical activities – hugging, walking, eating, breathing – while maintain their mental capabilities.

While technology has not yet created a cure for this devastating disease, it has created ways for patients to feel less isolated. Blogging about your experiences is a great outlet for patients at support groups to express themselves. In fact, “…research suggests that by spending 30 minutes each day for four days to write out their innermost thoughts and feelings, patients can significantly boost mental and physical health.” Granted, the research was from patients suffering from various forms of Cancer and not neurological disease, but the ideas are similar: there are alternative methods to healing, not just the infirmed, but also their families and friends.

When it comes to blogging write what you know and what you love; write about your passions, your hopes, your fears. Writing can be cathartic and when you write what you feel, what you honestly feel, the effects can be beneficial to both you and your audience.

It may feel, while blogging, that you’re writing for yourself, but believe it or not, you will have an audience. At first, it will be family and friends and colleagues. But as you continue to find your voice, you’ll find that there are many people who are interested in what you have to say – especially if you’re writing about a topic many can relate to.

For example, let’s say you decided to blog about your experiences with ALS. Well, you can write about the disease and its effects on your body as well as your family. You can write about health care issues; you can write about what it means to have the disease. There are plenty of people outside of your immediate network who will be interested in your story.

As you blog, you may also consider creating a Twitter feed or Facebook page to link to your blog and to provide additional information to your followers. This is a great way to engage with others who are interested in what you’re writing about, as well as create opportunities to meet others going through similar experiences.

Social media is the modern equivalent of the old pub/inn or religious center where people would congregate, share stories and lean on each other during troubled times. The social media space is filled with good people trying to help others. You can lend your voice to this growing space by adding your content and your experiences.
Josh Sternberg is the owner/founder of Sternberg Strategic Communications, a communications firm helping clients get their messages to the right audiences. Prior to entering the field, Josh was an adjunct professor at two New Jersey universities. Follow him on Twitter at @josh_sternberg.


The Future Is Now: Helmet to Convey Messages by Thought

There was news about a helmet that can read thoughts of the wearer from the Discovery Channel that gives hope to ALS patents. (Thanks to Bobby B. for the heads up on this story!) A new way of communicating that is already seen as something both the army and video game player can use, may help people with ALS (PALS) as well. A helmet that can produce emails, phone calls, and move objects by remotely controlling machinery would be a boon to PALS, who loose control of their bodies, yet their minds stay sharp. By allowing them to control devices with a mere thought, patients can regain some of the control that they had lost to the disease.

From The U.S. Army is developing a technology known as synthetic telepathy that would allow someone to create email or voice mail and send it by thought alone. The concept is based on reading electrical activity in the brain using an electroencephalograph, or EEG.

Innovations such as this remind us once again that the future is now! — The U.S. Army awards a $4 million grant to develop thought-based communication, using a specially designed helmet with 128 sensors.

Read More.