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.

Walk And Tweet To Defeat ALS This Weekend!

This Saturday is the Walk to Defeat ALS on Long Island at Eisenhower Park, East Meadow. Are you keeping everyone up to date by tweeting or updating your Facebook status? Are people who can’t make the Walk following your every move through social media? If so use the hashtag #ALSWalk in your tweets so people can follow along everyone’s comments attending the event.

A hashtag is a phrase or word that people use on Twitter so that tweets get grouped into specific topics in searches. When a certain hashtag gets popular it becomes a trending topic on Twitter and others take notice. The way to make the Walk to Defeat ALS a trending topic is to tag your tweets with the officially designated #ALSWalk hashtag.

Be a part of the movement to create awareness of of our cause while we walk to raise funds for patient services and research. If you need help setting up a Twitter account just email us at als@als-ny.org and we’d be more than happy to help out.

A Twitter account is a great way for Walk Team Captains to keep their walk teams up to date on everything leading up to, during and even after the Walk to Defeat ALS. You may find it so useful that it becomes a part of your toolkit for organizing and fundraising for your Walk team throughout the year. Remember, follow the official The ALS Association Greater New York Chapter Twitter accounts @ALSofGNY and the our official Walk Twitter account @WalktoDefeatALS to keep up to date on news and events.

Have a great Walk everyone.

And remember: Walk & Tweet To Defeat ALS!

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Fern Cohen Discusses Blogging vs. Twitter

I have used my blog for years to help raise awareness of ALS/Lou Gehrig’s Disease, and to let people know the struggles of a person with ALS [referred to as a “PALS”]. But, blogging has its limitations. The biggest burden is this: when you blog, you are expected to update with a meaty multi-paragraph entry that, for a PALS like me, can take a lot of time and energy. So, at least in my case, I try to update once or twice a week, and limit my blog post to very important matters that really impacted my week, or a specific topic of interest. But sometimes I would like to shout out little challenges and triumphs. For instance, last week my aide and I waited for Access-a-Ride [NYC’s para-transit service] for two hours! And I was without TV for three days because of a broken cable box [a major event for a PALS home all day]. I want to shout out about these “grrr” incidents as they are happening or soon after. On the positive side, I want the world to know about an inspiring PALS, and new friend I just met, or a research development that brings us a step closer to a cure.


In the past I would make notes that I put together into a blog post that week. Often, these events would lose their impact when it came time to blog. Then I found Twitter. On Twitter, I could “tweet” short messages as often as I wanted. What is Twitter and what is a tweet? Twitter is “micro-blogging. It is the McDonald’s of blogging — it’s quick, short, and sweet. Entries, or updates are called “tweets”. A tweet is limited to 140 characters, so I am forced to keep it short. I’ve learned how to make my message less wordy, which has been a challenging exercise for me. I can tweet from my computer, or I can tweet from a mobile device. As with my blog, I have followers [subscribers to my “tweets”], and my “tweets” appear on my Facebook page as well, so my Facebook friends see it immediately too.

Of course, when I tweet, I include a link to my blog, so my activity on Twitter has gotten me many new blog readers. And I have actually made new friends among my fellow tweeters, or is it twitterers? I will soon tweet about my team for the Walk to Defeat ALS, hoping to get my Twitter followers to make donations, or even to join my team to walk. I am also involved in rabbit rescue, so I tweet about that as well. I have also convinced some of my followers to sign petitions for disability-related causes. If you want to get the word out about anything, especially of a time-sensitive nature, or if you don’t want to commit to blogging, try Twitter.

You are also welcome to follow my Twitter. You can see my profile, and click “follow” at http://twitter.com/fec139.

Of course, my blog is still at http://xr.com/fern

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Fern Cohen: Blogging to Spread ALS Awareness

Fern Cohen has learned that spreading ALS awareness happens on a daily basis. Patience and a willingness to be open about her disease are most important. Says Fern, “Most people have never met someone with ALS, and only know it from Lou Gehrig.”

By writing a blog, Fern welcomes people to take a peek at living with ALS. Here she discusses clinic visits, dealing with aides and how she copes with feelings of solitude.

In her blog she describes herself and her motivation to write:

I live in Queens, NYC with my foster bunny Chelsea. I am a product of Depression-era parents, who brought me up with good, wholesome middle-class Jewish values, on a steady diet of Chinese food and non-cable TV. All things considered, I came out okay, except that I am neurologically disabled since 2004, when I was diagnosed with ALS/Lou Gehrig’s Disease. This caused me to finally “sit still and shut up”, something people have been begging me to do all my life. So I write. The rest is history.

Also, Fern wrote to us about her history in writing and blogging:

I wrote a lot in junior high and in high school [in JHS I was the editor of the literary magazine “Pieces of Mind”]. But I kind of abandoned my creative writing for many years or I wrote poetry and never let anyone else see it, and really didn’t believe I was good enough to send any of it for publication and public scrutiny.

But when I had to stop teaching because of ALS, I found a new voice and a new avenue — blogging. The internet opened up a whole new world for my writing and I began to get some really positive feedback. Now I am among the top writers for the internet site Associated Content. ALS made me sit still and abandon my formerly hectic life to reflect on so much about life. I found a voice and the time to write. I am working on a book about growing up New York Jewish in a world of Chinese food, baby boomers, depression-era parents chasing the American Dream, and young adults pursuing a dream of our own in the 60s and 70s, only to lose our way in the 80s and 90s, and finally to watch the younger generation achieve what we never could. And I am experiencing a disease that in 150 years has seen very little progress while I watched cures come about for many cancers, and AIDS turn from a death sentence into a manageable chronic condition.

In one very gratifying encounter, Fern wrote in one of her posts that at the ALS meeting/holiday party at Beth Israel Medical Center, she was approached by the mother of a patient who said they “learned from my blog about the accessible taxi dispatch program, and tried it because their wheelchair van is in repair.” They had a generally favorable experience but the point is that people are reading and getting something valuable out of her blog.

Fern has just recently agreed to write some guest blog posts for us at our Chapter’s blog.

Fern has even embraced Twitter, the micro-blogging platform that’s gaining popularity. From her account she talks about updates to her blog and other related news of interest, all in 140 characters or less, which is the word limit of Twitter posts, sometimes called Tweets. The Chapter currently is working with Fern to help form the chapter’s first ever online Support Group Meeting using Twitter.

Find Fern Cohen online on one of her many blogs: Forced To Sit Down & Shut Up, or read her blog on being a Baby Boomer.

Fern’s Twitter profile is at www.twitter.com/fec139

Photos (From Top to bottom): Fern Cohen at Advocacy. An ancestry collage by Fern Cohen. Fern Cohen at The Gates in Central Park.

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