Parkinson’s Action Network Illinois State Director Roger Halleen has been working with PAN since 2008 when his wife, Barbara, was diagnosed with Parkinson’s. Since volunteering with PAN, he has developed a strong relationship with his Representative, Aaron Schock (R-IL), and is active in the fight for strong federal policy and support for Parkinson’s research funding and other programs.
We interviewed Halleen and learned about what drew him to Parkinson’s advocacy and how he helps raise awareness and educate the public about Parkinson’s disease.
Q. What drew you to Parkinson’s advocacy and working with PAN?
Roger Halleen: Attending a meeting of the Central Illinois Parkinson’s support group just after my wife’s diagnosis made me more determined than ever to become an advocate. I signed up for Action Alerts on PAN’s website, and over time became more interested in seeing what else I could do. Having worked on some legislative issues as president of my union — Local 3774, American Federation of State, County and Municipal Employees — I felt becoming more involved was a way I could best make a difference.
The final push to really become involved with PAN came when I had the chance to meet PAN advocates Sue Laux and Paula Tomlin at a workshop in 2010.They convinced me to become a Congressional Coordinator for PAN, and after several months of working with Rep. Aaron Schock’s(R-IL) office and having contact with SenatorRichard Durbin’s (D-IL) office, I had a conversation with Hayley Carpenter, PAN’s Director of Outreach, about doing more in a volunteer leadership capacity.
Q. How do you help educate about Parkinson’s disease?
RH: I speak to local support groups, schools, and civic organizations about a variety of aspects related to Parkinson’s disease: the history, symptoms, causes, treatment, how people can become advocates, and of course what PAN does and how to become involved with PAN.I also just recently hosted a fundraiser – Pedal for Parkinson’s – at the health club my wife Barb and I belong to. We raised $800!
Q. You and Barb do a lot of community outreach – what’s been most effective in terms of educating people about PD?
RH: I’m co-leader with my wife of our local East Peoria support group, and also co-leader of the Bloomington support group. I talk to both of these groups, as well as many others within driving distance, about PAN’s work and other advocacy action steps we all can take.
Handing out information at local health fairs is also a good outreach tool, but I’ve found it’s really important to get your message out by speaking to small groups.
I think the highlight of my year was giving my PAN presentation at the APDA Midwest Chapters Leadership workshop, and having a display table set up at their symposium the next day. It gave me the chance to speak to 45 other support group leaders and network with the 350 attendees at the symposium.
Q. What did you do this year for Parkinson’s Awareness Month in April?
RH: We had a great April! Six local Illinois communities signed proclamations about Parkinson’s awareness, and I also was successful in getting both the Illinois House of Representatives and the Illinois State Senate to sign proclamations declaring April Parkinson’s Awareness Month.
The Don BohlanderFundracers’ tribute race drew 1,000 people who had the chance to learn more about advocacy through the display I had set up about PAN.
April 23rd was our Parkinson’s awareness day at the Peoria Chiefs — our minor league baseball team. We had over 100 people in our group and about 3,000 at the game that day. One of our support group members got to throw out the first pitch, and we raised more than $1,000 dollars that we donated to a local researcher – Dr. Craig Cady — who is doing stem cell research on Parkinson’s disease right here in Peoria at Bradley University.
Q. What are some of the biggest challenges you have faced as an advocate?
RH: I feel the big challenge is getting people involved. I know that everyone is busy and has a lot going on in their own life, so sometimes I find I have to work a little harder to raise awareness and encourage people to sign up for action alerts.
Q. What has felt like “success” during your time as an advocate?
RH: It’s been wonderful to build a relationship with Representative Schock and his staff, and I’ve really enjoyed speaking to students about Parkinson’s disease. Speaking in the health classes at our local high school was particularly enlightening because I was surprised at how interested they were in Parkinson’s.
Q. Do you have a good working relationship with your Representative and Senators? How often do you interact with them and their staff?
RH: Representative Schock has been a real champion for us – everything from meeting with us and being responsive to our issues, to helping liaise withSocial Securityfor a support group member. On the Senate side, Senator Kirk is on the Congressional Caucus forParkinson’s Disease, but I’d like to grow our relationship with him even further.
Q. Do you reach out to your Congressmen by phone, or has email been more effective?
RH: I believe it’s better to make phone calls. However, I do understand some people’s reluctance to use the telephone. I will always make a call and send a follow-up e-mail if there’s time. And, after sending an email I usually try to follow that up with a printed letter to their district office.
Q. What advice do you have for people with Parkinson’s who want to become more involved with PAN?
RH: I can sum this up in two words: DO IT! I’m a firm believer that you will feel better, and you’ll understand what is going on in Washington the more active you are.
Roger, on behalf of everyone at the Parkinson’s Action Network, we thank you for the great work you’re doing to raise awareness in your community and encourage others to get involved!