Grassroots Champions: Honoring Our Action Center Super-Users!
This summer we informed CFIDS advocates about a flurry of opportunities to engage Congress and the media, and we were delighted with a tremendous response to Action Alerts issued through the CFIDS Association’s Grassroots Action Center. Since the Action Center was launched in 2004, 6,351 people have used it to send 19,761 messages to lawmakers, health policy officials and media professionals. Two very active advocates, Laura Smith and Theresa Fitzgerald, sent their 100th messages through the Action Center this summer and over 30 more sent 50+ messages each. We honor their participation and the example they set for others. But who are these Action Center super-users, and why do they invest their limited energy in being Grassroots Champions? Here’s what they told us.
Advocates who have sent 50+ messages
using the CFIDS Association’s
Grassroots Action Center
June Barbosa, Port Richey, FL
Elly Brosius, Centreville, VA
Alyson Butcher, Houston, TX
Patricia Conboy, Plano, TX
Lisa Espirita, San Diego, CA
Theresa Fitzgerald, Wall, NJ
Suzanne Glaser, Brooklyn, NY
Jenny Howard, Conneaut Lake, PA
Paul Hueber, Altamonte Springs, FL
Teresa Lombardi, West Babylon, NY
Joyce Moncelle Kaye, Bloomington, IL
Jane Mostowitz, Houston, TX
Mark Peterson, DDS, Chesapeake, VA
Cindee Rice, Scottsdale, AZ
Amanda Rinkel, Puyallup, WA
Carol Sieverling, Euless, TX
Laura Smith, Greensboro, NC
Sheila Stevens, West Miami, FL
John Trussler, Grants Pass, OR
Toby Vokal, Grand Haven,MI
Claudia Wendlandt, Kennesaw, GA
Katherine Winkert, RN, Casanovia, NY
Nine others who wish to remain anonymous
Laura Smith tops the list of Action Center users with 124 messages sent. “I had no idea I would receive an awesome letter saying I was the top advocate, but that was a great rush because I have always been competitive.
So now I have to hold onto that top spot!” Laura’s motivation for responding so faithfully is in her genes, in more than one way. She shares, “I am an activist by nature, so I don’t understand the psyche of not taking action when something is important to you. However, I recently learned that some members of my family don’t believe that I have CFS, although all the specialists I’ve seen agree with the diagnosis. It makes it doubly important for me to get the word out and to make people understand that we are real victims and not hypochondriacs.” She continues, “My brothers think I ‘act’ sick for pity. I’ve never wanted pity in my life. I operate from a position of strength. So I think trying to publicize and help more people is my inspiration.”
Volunteer EMT Theresa Fitzgerald is motivated by a family connection, too. She advocates on behalf of her sister Cindy who came down with symptoms in July 2002. Two difficult years passed before Cindy was finally diagnosed with CFS. “I have watched this vibrant, highly energetic woman as she’s had to leave her job, give up making dinner for her family and basically, as she barely functions doing small, everyday tasks. My heart just breaks when I see her like this. I have been doing whatever I can to get the word out.”
Theresa urges others to get involved, too. “You need to do or say something. Don’t think it might be silly or won’t help! It really does count for something, even if it’s only one letter, one phone call or hundreds. Speak up, stand up and let them know you are out there!!” Theresa’s actions speak for themselves—she has sent 101 messages through the Association’s Action Center since joining the listserv 10 months ago.
Katherine Winkert, a disabled nurse, writes, “The reasons I participate in the Grassroots Action Center are mainly selfish. I have been quite ill for 25 years, often requiring long hospitalizations or bedrest at home, so I have a big stake in a cure or useful treatments being found for CFIDS. Grassroots advocacy allows me to feel better about myself and accomplish political goals at the same time.”
Several people mentioned their homebound status as a primary reason for using the Action Center – Lobby Day on Capitol Hill and other “live” events are simply beyond their means, so the online center gives them a way to be part of a group with shared goals. For Jane Mostowitz, it helps break the isolation she often feels. “It’s hard for individuals to go it alone, and I feel that responding to alerts and advocacy is my way of helping.”
Others understand that making CFS “real” by introducing policy and media influencers to the realities of the patient experience is an important agent in change. One of our "anonymous" champions expressed this well. “I think adding real people to the voice of advocacy is very powerful. If we are going to find a diagnostic marker or screening test, effective treatments and a cure, we need to advocate for funding for research and education.” She adds, “using the Action Center is an effective and meaningful way to contribute to the cause.” Working with others to effect change motivates all of our champions, but Theresa Lombardi urged, “We must all stick together. The more people e-mailing and speaking out, the better, as a group, to push for the cure. Let’s not suffer in silence.”
We also heard from people who said the easy-to-use site made it appealing to respond to our Action Alerts. Support group leader Claudia Wendlandt told us, “Whenever I receive an Action Alert, I urge my group to use the Grassroots Action Center. It is so easy to use. The letters are already written and the only thing that needs to be added is a paragraph about their experience.” Another support group leader, Carol Sieverling, writes, “I love using the Action Center. It makes it easy to engage in advocacy with a minimal investment of energy and time.”
Several of our champions hoped this article (and our recognition of their efforts) would inspire more people to respond to Action Alerts. Paul Hueber, asked us to pass along his observation; “Let other [people with CFS] know that this is a very easy but effective way for us to raise awareness among various government officials and media groups. And by raising awareness, we will hopefully be able to raise more funding for research and treatments. It only takes a couple minutes to send an e-mail using the links and templates that are provided.” Katherine Winkert added her endorsement, “I thank the CFIDS Association of America for providing the site and making it so easy to use. I encourage anyone who has enough energy, cognitive ability and a computer to get involved in the grassroots advocacy system. I have learned that even when I am homebound and feeling terrible, I CAN make a difference!
We’ve thanked our Grassroots Champions with a Spark! t-shirt. Want to see your name on the list of Grassroots Champions next time? Visit the
Action, sign up to receive Action Alerts through the listserv and send your first or 50th message. You’ll reap the benefits—feelings of inclusion, empowerment and before long, perhaps something more tangible too! Center