Tag Archives: Social Media

Ryan’s Journey: 35 Miles on his 35th Birthday for ALS

35 for 35 Run to Support ALS Association Greater New York ChapterHave you ever woken up thinking I want to do something special to celebrate my birthday this year, something to make this year really stand out? Ryan Gibeau is turning 35 on April 28th and this year he plans to make the day count. So here we are one month out from the big day and Ryan needs your support, he will be running 35 miles in Central Park to raise money and awareness for ALS.

“ALS is a terrible disease that takes away person’s ability to walk, talk, run and be in control of his or her own body. While I am still fortunate enough to be able to run I want to use my body to help those who can’t, which is why I am donating all the money from this run to the ALS Association,” Ryan said.

This is a tall task since Ryan said he’s never run a full marathon, his longest run was 20 miles, but he’s been training hard, ready to be part of the fight to cure ALS.

“I would say some people think I’m absolutely crazy and the distance is too far, but most people are really excited about it. I mean why wouldn’t you do something for such a great cause if you have the ability to help?” Ryan said.

On the day of the run April 28th, there will be a live feed so you can follow Ryan’s journey on Facebook.

Over the next month there will be incentives provided to donate money including the ability to pick and choose songs on his running playlist and, dress him up in funny costumes, and ride alongside in a Central Park Pedi-cab! Check back here frequently for updates on new donation incentives.

If you would like to support Ryan and the ALS Association Greater New York Chapter you can donate here. 100% of the proceeds will go to the Chapter and help us continue in the fight to find a cure, and to provide compassionate care to all our patients and families.

Advocating for Change on Capitol Hill: 7 Years and Counting

Janet Palkewick Advocates for ALS on Capital Hill
Janet Palkewick Advocates for ALS on Capital Hill

Janet Palkewick is defying the odds, living with ALS for nearly 27 years. She was diagnosed in 1989 while pregnant with her fourth child. When she hit the 20 year mark, she decided it was time to join the larger fight to end ALS.

“I realized I was still living for a purpose. I decided it was time to get more involved with finding a cure,” Janet said.

Which is why Janet decided to become an ALS advocate. She will be heading to Capitol Hill with The ALS Association for the 8th time this May for our Public Policy and Advocacy Conference along with her children and grandchildren. This important conference includes a day of lobbying elected officials on Capitol Hill.

“Having 7 years of experience, I’m very comfortable speaking about ALS and asking for the needed funding. Is it worth the time, expense, being drained both physically and emotionally? A great big YES,” Janet said. “I feel accomplished, I was heard. I made a difference.”

Janet admits sharing her story with lawmakers can be difficult but says the lawmakers have always been receptive.

“I have never had a bad meeting. The lawmakers or their aides have listened with genuine interest and concern. It is very important for lawmakers to understand that ALS does in fact affect the whole family. We need to show the personal side of ALS, put a face on the disease. Sometimes it gets very emotional; there are lots of tears. But that’s okay, it’s making ALS real,” Janet said.

Staying motivated and positive isn’t always easy, but Janet says the progress she has seen since her diagnosis keeps her motivated.

“More has been accomplished toward finding an ALS cure in the last 10 years than the previous 70 years. Actually, since my diagnosis 27 years ago, the most headway has been made in the last 5 years. I am hopeful! I must remain hopeful that there will be a cure in my lifetime,” Janet said.

One of the bills our advocates will be talking to lawmakers about in May, would eliminate the 5 month waiting period for disability insurance for people diagnosed with ALS. Janet says it’s important for everyone to speak up on this issue, even if you are not directly affected by ALS.

“When there is an issue to be addressed, I not only send my letter, I also ask others to do likewise. Advocacy is not limited to PALS and family, anyone can be an ALS Advocate. I am a firm believer in fundraising and advocating all year long. After all, PALS and their families need help all through the year,” Janet said.

 Advocacy week will be held from May 14th – May 16th. To join the Greater New York Chapter delegation or to find out more about how you can get involved head to our website at als-ny.org or call Wendy DuBoff at 212-720-3054.

SpongeBob Creator Stephen Hillenburg diagnosed with ALS

Stephen Hillenburg SpongeBob SquarePants Creator
Stephen Hillenburg, SpongeBob SquarePants Creator

Many of us have been enjoying SpongeBob Squarepants since it started back in 1999. The ALS Association Greater New York Chapter is saddened to learn that SpongeBob creator Stephen Hillenburg has ALS. Hillenburg released this statement to Variety:

“I wanted people to hear directly from me that I have been diagnosed with ALS. Anyone who knows me knows that I will continue to work on ‘SpongeBob SquarePants’ and my other passions for as long as I am able. My family and I are grateful for the outpouring of love and support. We ask that our sincere request for privacy be honored during this time.”

You can read the Variety article here.

Our thoughts are with Stephen and his family. Hillenburg says he will continue to create new SpongeBob Squarepants episodes and has no intention of slowing down anytime soon.

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.