Congratulations to Jean Burns, recipient of the 2011 Alan Bonander Humanitarian Award
Jean burns has an MA in English/Linguistics. She taught Business Office Technology and English a Second Language at Cabrillo College in Aptos, California. Later at the National Reconnaissance Office, Jean worked as a Human Factors Engineer, Software trainer, system administrator and website developer.
In November 2002, Jean noticed that her left little finger shook. She mentioned it in passing to her GP at an annual visit. Her doctor became very quiet and said that a tremor on one side of the body was an indication of something serious. A visit to the neurologist confirmed Jean’s worst fears: she had Parkinson’s disease.
Jean immediately started searching the Internet for something that would help her fight this incurable progressive disease. In her searches, she stumbled across the term ‘clinical trials,’ and immediately started searching www.clinicaltrials.gov. She found a clinical trial recruiting de novo people with PD (PWP) for a new drug that might be neuroprotective. The neurologist had never heard of this clinical trial, but he confirmed Jean met the criteria for it. Jean then resolved two things: (1) to join the clinical trial and (2) to find a neurologist who knew about current research and clinical trials.
Although she didn’t know it at the time, joining the PRECEPT clinical trial was Jean’s first step into advocacy. Jean began speaking to her family, friends, and neighbors about the importance of clinical trial participation. She later sat on panels at two CISCRP AWARE conferences.
Although the PRECEPT trial ultimately failed to show any neuroprotective qualities, Jean continued in the follow-on PostCEP trial which follows Jean and others and does research on possible biomarkers for PD. Jean’s husband has joined in the effort and has been in two clinical trials for biomarkers as a “Control.”
Jean joined the Parkinson’s Action Network in 2005 and has volunteered as both a congressional coordinator and a state coordinator. In 2007, PAN recognized Jean with its “Murray Charters Award.” And in 2009, PAN honored Jean with its “Millie Kondracke Advocacy Award.”
In 2007 Jean and her friend, Sheryl Jedlinski, started PDPlan4Life.com in order to share their stories of humor and living well. Their website has received 25,000 visits from people in every state and from 117 countries. Jean & Sheryl have since “taken their show on the road,” and speak at PD conferences around the US. Wanting to give back to the community, they charge no honoraria for their talks.
Due to her technical background, much of what Jean does is technology based. She loves working on the computer and helping other PWP and PD organizations come up with technology solutions. Jean helped the WPC2010 set up its Facebook page and its very popular video contest; served on the Parkinson's Disease Foundation's Quilt Project Committee and helped with the Quilt Facebook page; and spoke at the WPC2010 about Social Media and how PWP are sharing information online.
Jean has helped other organizations with their Facebook pages and websites including APDA-Arizona Chapter, APDA West, and two Arizona triathletes who raise funds for Parkinson’s disease research. She is also working with Fulvio Capitanio, a PD Advocate from Spain to promote a comic for children whose parents are diagnosed with Parkinson’s. Jean recently set up a new social media collaborative site for PD advocates which she hopes will one day become a place for all advocates to share ideas and resources. (//grou.ps/pdadvocates/).
When the staff at the Muhammad Ali Parkinson Center (MAPC) asked Jean if she could create a digital mosaic from support group paintings about what Parkinson’s means to them, Jean said yes. She collaborated on this project with Gregory Pearce, who guided the painting process and the MPAC staff. The digital mosaic, “Let Your Energy Light Our Flame” now hangs proudly at the entrance to the Muhammad Ali Parkinson Center in Phoenix, Arizona.
Alan Bonander was a trailblazer in his early use of message boards to share PD information and awareness. Jean believes that now is an exciting time. It is the time to follow Alan’s lead and to take a leap into the use of social media to communicate, collaborate, coordinate, and consciously work together to break down international and linguistic and social borders.
Moving beyond websites, Jean is focusing her efforts on blogs, social networking sites like Facebook, Twitter and YouTube and hundreds of other sites where people from all over the world are meeting and sharing information. According to Jean, “the Internet and Social Media are amazing tools available to us to connect, share information, and educate us. We are one worldwide community: making our voices known, sharing our stories, working with together as PWP, working side by side with scientists, and ultimately working for the cure.”
Congratulations on your award. Did you know Alan? You do so much for us, you remind me of him. He wrote newsletters. formed a group on the early internet (which then was called darpanet or bitnet) and shepherded us onto the Parkinsn list when it started. He came to all our support groups. He was fearless about telling truth to power and asking the tough questions. With irresistable smiles and corny jokes, he would lure us into helping out at his conferences. He attended the early PAN meeting when there were only about 30 people there.
Alan saved my life. After I'd weathered the denial stage, I was hit by a dark cloud of despair. When Alan called once, he heard the catch in my throat and talked to me for hours until I was "cried out." He assigned me to edit personal stories before he put them in his Movers and Shakers newsletter. Meeting those people and talking about their stories broadened my perspective.
He was always teasing me about not coming "out of the closet." It took me two years to tell my boss about PD, and another 3 years before telling my co-workers. One of his conferences was covered by Connie Chung's program. There was a brief close-up of my face, which Alan thought was hilarious. I'd been outed.
Towards the end, Alan challenged us to imagine the best living conditions --- housing and assisted living as well as Parkinson medical services. There was a flurry of brain-storming but as far as I know, the project didn't go far. If only.....
When Alan died, I was devastated. He was my Rock. At the funeral, Carol Walton said it best: that Alan covered so many roles as one person, that we all had to do our part to take them on and work until the work is done. You are a model of not giving up. Thank you
One of your fans,