Jackie Hunt Christensen: Award-winning advocate, PAN's Minnesota State Director

Jackie Hunt Christensen, PAN Minnesota State Director and a founder of Health Care Without Harm (HCWH) in 1996, was recently honored with HCWH’s 2012 Environmental Health Hero Award for her volunteer work to advance environmental health science or policy.

Christensen with HCWH president, Gary Cohen

We interviewed Jackie about her work and asked her to share why advocacy is important to her, and how others can be encouraged to get involved with PAN:

PAN:   Jackie, tell us a little about yourself and how you became involved in the Parkinson’s community.

Jackie Hunt Christensen:  I was born in Jackson, Minnesota – a small farming community. Except for interludes in Chicago (18 months) and Seattle (4.5 years), I've been here all of my life.  I noticed my first Parkinson’s symptoms six weeks after my son Bennett was born.  I was diagnosed 18 months later, at age 34.  This was back in 1998, and I’ve been educating myself and advocating ever since.

PAN:  What drew you to working with PAN?

JHC:  In 2001, I was at a neurotoxicology conference, where, as someone with Parkinson’s disease (PD) I was clearly in the minority.  During a Q & A session, I asked how many people in attendance had Parkinson's disease.  Two other people -- out of a crowd of about 400 -- raised their hands.  One of those people was then-PAN board member Richard Nicely, who asked me quite bluntly, "What are you doing to help find a cure [for PD]?"  He told me about PAN, and right away I registered for the 2002 PAN Public Policy Forum.

PAN:  When you look back over the past few years, what are some of your most memorable advocacy moments and success stories?

JHC:  I’ve had so many wonderful moments as an advocate.  Here are some highlights I think of often:

Proudest, most humbling moment:  winning the Milly Kondracke Award for Outstanding Advocacy in 2006.

Most exciting moment -- speaking at a press conference in favor of federal funding for embryonic stem cell research, on the day the House of Representatives would pass the Stem Cell Research Enhancement Act the first time.  I got to meet Rep. Dianna DeGette (D-CO) and Senator Tom Harkin (D-IA).  Rep. Chris Shays (R-CT) got us into the House Gallery to watch the floor vote.  It was so hard to be quiet and keep from cheering during the floor debate, but we had to, or we'd be thrown out.

Most “I’m really in Washington” moment:  Sen. Orrin Hatch giving me a hug at the aforementioned press conference.
Proudest state advocacy moment:  organizing our first statewide community event in support of PAN’s first webcast-only Forum.  We had 235 people attend.

Proudest integrated advocacy experience:  organizing the June 2007 Consensus Conference, which produced the 2008 Consensus Statement on Parkinson's Disease and the Environment.  The statement wasn't nearly as strong as I'd hoped, but it was the first of its kind in the PD community, and I am proud of all the great work we did.

Christensen and the PAN Minnesota delegation on Capitol Hill, February 2012

PAN:  Can you tell us a little bit about how you got involved in your environmental focus around PD?

JHC:  I’ve been involved in environmental activism for more than 20 years.  I worked for the international environmental group Greenpeace for more than seven years, and I was serving as the director of the Food and Health program at the Institute for Agriculture and Trade Policy when I was diagnosed with Parkinson’s.  At that time, I was involved in the creation of two international coalitions:  Health Care Without Harm -- The Campaign for Environmentally Responsible Healthcare; and, the Collaborative on Health and the Environment.  Since I was already working to bring groups together around an issue, I just narrowed my focus a bit to really hone in on environment-health issues.

PAN:  What are some of the biggest challenges you have faced as an advocate?

JHC:  So many people are afraid to participate because they’re intimidated by their elected officials.  It’s also a challenge getting healthcare professionals and researchers to believe that they can be advocates, too.  Fortunately, this is changing as we have more events where patients interact with scientists.  I also face a personal challenge of having Crohn’s disease in addition to Parkinson’s, so when my Crohn’s is acting up, it makes my work that much more challenging.

PAN:  What role does your family play in your advocacy work?

JHC:  I couldn’t do it without them!  They have come to the Forum and gone to the Hill a couple of times, but most importantly, they take care of me when I overextend myself.  I am trying to do a better job of listening to my body, and they are there to remind me about that.

PAN:  Can you talk a little bit about your involvement with the other national Parkinson’s organizations?

JHC:  I have served as a board member of the local National Parkinson Foundation (NPF) chapter for 10 years, mostly as vice president of the board.  Here in Minnesota, we are holding our second local forum, which is a collaborative effort with the MN APDA Info & Referral Center and the three movement disorder centers in the Twin Cities, on June 11-12, 2012.  We hope to have 300+ people attend.

PAN:  You are incredibly active in the PD community, and so many are grateful for all the work you do.  What do you do in your “free time” (if you have any)?

JHC:  I try to go to all of my son Bennett’s soccer games.  In the summer, we often go to a cabin owned by some friends.  When we’re there, I like to go trout fishing in the nearby abandoned mine pits, paint watercolors, and read in a lounge chair on the pontoon boat.  Every winter, I try to teach myself to knit -- I have to use a loom instead of needles.  This year, I actually finished a scarf!

PAN:  What are your hopes for the future for the PD community?

JHC:  My biggest hopes are that we will become more diverse at all levels – racial, ethnic, socioeconomic, geographic, etc. – and, get more folks who do not have PD (such as researchers and healthcare providers) involved in advocacy efforts.  I also hope to see organizations coming together wherever possible to eliminate waste and duplication of efforts.

PAN:  What advice do you have for people with Parkinson’s who want to become more involved in the community?

JHC:  There are so many ways to be an advocate:  writing emails or letters to your legislators; speaking to your local Rotary, Kiwanis, Lion’s Clubs, or church groups; and writing letters or articles on issues that concern you the most.  Find something that gets you excited, and tell folks about it!


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