The ALS Association Launches ALS Virtual Advocacy Community

The ALS Association has launched a new and exciting online community designed specifically for people who want to engage in discussion about ALS advocacy issues, share their advocacy experiences and ideas, and meet others from around the world who have the passion to make a difference in the fight against ALS.  The ALS Virtual Advocacy Community includes a number of exciting features such as “blogs,” discussion boards, on-line surveys, and tools that enable individuals to easily identify and contact others within the ALS community.  

“The site will become a place for an open dialogue among people from throughout the ALS community, including PALS and families, friends and caregivers, researchers and clinicians, and others who want to join our fight for a treatment and cure for ALS,” said Steve Gibson, The ALS Association’s Vice President of Government Relations and Public Affairs. “Recognizing that discussion and information sharing is vital not only to advancing our advocacy priorities, but also to ending this disease, we are glad to offer this service to the entire ALS community.  However, we want to remind people that this is not a place where medical advice is offered in an official capacity and that people should contact the Care Services Department if they have medical questions.”

Features of the ALS Advocacy Community: 

Access the Site

The site is available by clicking here.

Join the Community

Although the site is free to the ALS community, you will need to register for the community in order to take advantage of its exciting features and capabilities. You will set up a profile on the site and once you sign in, you will be identified by your screen name in the community. You also decide how much information to share with others.

Create and Read Blogs

Blogs are online “web logs” or diaries and are great tools for advocates to use as a forum to share their thoughts, ideas and experiences. You can create your own blog for those longer postings that aren’t really for discussion groups, but which you want to share. You can post photographs, allow other members to comment on blog entries or you can turn off that feature, as you wish. You also may identify your favorite blogs, such as the blog on Familial ALS, for convenient reading and receive alerts when new blog entries are posted in your favorite blogs. 

Discussion Boards

Several discussion boards have been established on the site to stimulate conversations about specific ALS advocacy topics. These include discussions on National ALS Advocacy Day, Familial ALS, the Medicare Prescription Drug Benefit, Children and Families, and ALS and the Military. As the site grows, additional topics will be added. These discussion boards are great features you can use to interact with the ALS community and share your thoughts and ideas.

Identify Friends

The site allows you to identify friends within the community, including those who may live near you. At the same time, your privacy is assured and others only have access to information which you choose to make available. This feature is a great way to identify people in your local community who share the common bond of ALS. 

Messages

You will be able to communicate with other community members without disclosing your email address. The Message feature lets you send messages back and forth to the Friends you personally have identified in the community. You may also control which notifications you wish to receive, and keep up with your favorite discussions and blogs through alerts. 

Invite Others to Join the Community

We encourage you to share the site with friends and family. The site has tools available that allow you to easily invite your friends and family (up to 20 at a time) to visit the site and join the community - a great way to spread the word and grow this exciting online ALS community.

Surveys

Periodically, The ALS Association Advocacy Department may conduct surveys on the site in which you can anonymously participate; these may be set up to provide feedback about the community in general or specific advocacy issues.

HIPAA & COPPA
The safety of your information is very important to The ALS Association and our partner in this community, ClinicaHealth, and everything in the community is governed by healthcare privacy concerns, consistent with the Health Insurance Portability and Accountability Act (HIPAA) and the Children’s Online Privacy Protection Act (COPPA). In addition, online transmissions are protected via SSL, the same technology used to safeguard online bank transactions.

 

 

Visit the site today, join the discussion, meet friends and take advantage of this exciting resource a resource that will allow the ALS community to stay in contact with each other and engaged on advocacy issues throughout the year. 

Basic Online Safety Tips:

Being online in a community of like-minded people can be a wonderful experience. It can also give you a false sense of safety. Please keep these basic rules in mind when participating in any online forum:

Be Safe. Be Smart.

  1. Being online does not make you completely anonymous. There are ways that people use to discover real life information about the people they meet online. Never publicly post in any online forum personally identifiable information. This includes your name, address, telephone number, cell number, etc. This information could be misused. Use good judgment when giving out personal identifiable information.
  2. It is highly recommended that you never rely on information or opinions exchanged in this online community to replace qualified health/medical professionals to meet your individual health or medical needs. The community is intended to be a place where members with an interest in advocacy can meet other people to exchange ideas and support one another. It is not a place where medical advice is offered in an official capacity.

If you have any questions about accessing or using the ALS Virtual Advocacy Community, please contact Pat Wildman in the Advocacy Department toll-free at 1-877-444-ALSA or pwildman@alsa-national.org