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.

A Midwinter Night's Dream & The Chase Community Giving Challenge

The ALS Association Greater New York Chapter congratulates the students of Northport High School on Long Island for advancing to the final round of the Chase Community Giving Facebook Challenge. A Midwinter Night’s Dream is one of only 100 finalists and the only ALS organization to make it to the final round.

Please join us in supporting them by casting your vote for A Midwinter Night’s Dream, Inc. (AMND) as your charity of choice.

The organization receiving the most votes will be awarded $1 million; the top five runners-up will each receive $100,000 in this final round. You can cast your vote from Midnight, January 15 through Midnight, January 22, 2010. To vote for A Midwinter Night’s Dream, Inc. (AMND) as your charity of choice by clicking here.

A Midwinter Night’s Dream has pledged to donate $50,000 of their winnings to our chapter. For more information on A Midwinter Night’s Dream click here.


Seeking Volunteers To Help With Website

At the ALS Association Greater New York Chapter we take pride in the work that we do to provide essential patient services for PALS (People with ALS) and helping to fund research. A part of our work is done through the web on our website and the various social networking sites we are on, including this blog. We work hard in order to keep uo to date on the latest technology so we can offer the best in communication on the web to our patients, families and friends of patients, caregivers and others. At times we rely on the genrosity of volunteers to help get over certain technological hurdles we can’t handle in-house or to make the experience better for those visiting our sites. That help is invaluable and we thank everyone who helps make our online communications possible.

Below is a list of technical issues we need assistance with. They are probably very simple problems that many programmers or technical people can resolve quickly but we have, for one reason or another hit a brick wall in resolving. Any help fromt he community would be greatly appreciated. If you want to help either offer a helpful tip or solution (or a even a link to a webpage that provides information) in the comments section. Or you can email the Director of Communications, Lon S. Cohen directly at Thank you in advance for your help.

List of technical items we need help with:

1) Our website does not format properly in Safari. (We’ve gotten a few complaints about this.)

2) Help programming PHP so that we can quickly add new pages without having to insert the page name to be called up mannually.

3) Implementing Facebook Connect. We have it verified by Facebook and the connect button shows up in Firefox but not in IE.

4) The code snippet for Facebook Connect to show other friends on the website is not properly revealing those friends.

5) Need help from SEO specialist on best way to redirect an alternate domain name donated to us so to capitalize on Google search results.



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 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!


New Facebook Page

If you are on Facebook, please click the link and befriend the NEW! ALS Association Greater New York Chapter Facebook profile.

We are migrating our Facebook page from the group page where it started to a real Facebook fan page. Why? Because fan pages act more like your regular Facebook profile pages allowing us better interactivity, sharing and a bigger presence on Facebook.

Unfortunately, Facebook does not have an easy method of transferring a business or nonprofit from a group to a fan page. Basically we have to alert all our Group members of the move and then abandon the old page for the new one. It will be work and we’ve spent a lot of time cultivating a following on our Facebook group page (almost 400 people!) but in the end I think it will be worth the effort.

Click here to become friends with us on the NEW! ALS Association Greater New York Chapter Facebook Page.