Gretchen and Michael Church have been involved with PAN for nearly a decade. Their passion for advocacy and education has helped increase awareness about Parkinson’s among their elected officials, as well as others on Capitol Hill. They have established a robust network of advocates up and down the state of Florida, and are always eager to work with new and existing advocates to teach them how to be the most effective in their work.
PAN’s Director of Communications, Carol Blymire, interviewed the Churches about their experience as PAN advocates:
Carol Blymire: How long have you both lived in Florida, and what drew you to Parkinson’s advocacy?
Gretchen Church: I moved to Florida nine years ago when Michael and I founded Movers & Shakers . Michael had been involved with a local Parkinson’s organization, and the director of PASFI (Parkinson's Association of SW Florida) told him about PAN and how we could get involved. Michael and I both are political junkies by nature -- Michael having been a legislative aide prior to his PD diagnosis and both of us have worked on and led campaigns from the national and local level. PAN was a natural fit for us. The need for those of us dealing with Parkinson's to use our voice and actively work for our treatment and hopefully a cure is immense. PAN helped fill that need.
Michael Church: I've lived and worked in Florida for about 30 years. After my diagnosis in 1995, I struggled for years before becoming active within the PD community which is where I met Gretchen. We both wrestled with the lack of attention being given to young-onset at that time and together founded Movers & Shakers  to address the problem. We knew something was missing in our efforts, so we looked around and PAN fit that need.
CB: I think your story is particularly interesting, because you both have Young-onset Parkinson’s. How did the two of you meet?
Michael: Well, it is a modern-day fairy tale really. Gretchen was living in a small, rural town in Tennessee and I was living here in Florida. Gretchen had been diagnosed only a few years and things were not going too well. We had both seen the fallout from an early diagnosis of a progressive degenerative illness on our marriages. Back in 2002, there were very few resources or support out there for Young-onset PD (YOPD). There was one online message board and we both were on it. That’s how we got to know each other.
Gretchen: We started an online support and outreach group on AOL. Within three months, we had over 350 members worldwide and knew we were onto something. Six months later, we founded Movers & Shakers, wanting to go beyond the Internet, and we also conceptualized the first YOPD Conference that is still going on today. It was during that time I was making business trips down to Florida to work on many things... and somewhere along the way we realized we not only made good business partners, we also made great life partners.
CB: When you look back over the past few years, what are some of your favorite advocacy moments and success stories?
Michael: My personal favorite was back in 2005-2006 when we did a ton of outreach to encourage Members of Congress to join the Congressional Caucus on Parkinson’s Disease. I remember being told that because of our work, PAN's phones lit up with requests from legislative aides on Capitol Hill seeking information on the Caucus for their Members. At the end of the day, we were told that a record number of Congressional members signed on to the Caucus -- 11 from Florida, alone!
Gretchen: Over the years there are so many memories and success stories, choosing only a couple is difficult for us to do. But, one of my favorite moments was when we were in Washington for PAN’s annual Hill Day with a new advocate who was pretty star-struck being in the same building as Members of Congress. Michael and I had been doing advocacy for awhile and our relationships with many Members were well established. Our new advocate happened to bump into our Congressman, Rep. Connie Mack, outside the cafeteria and was in awe when Congressman Mack saw Michael right behind her and said, “Hey Michael, how are you?" and told us how much he looked forward to our meeting later that day. It was a great way to illustrate the importance of forging and maintaining relationships with elected officials, and made us feel really good about our work.
CB: What are some of the biggest challenges you have faced, as advocates?
Michael: I think the biggest challenge we face as advocates is overcoming the internal fear we all face as human beings to speak up and ask a Member of Congress for millions of dollars in such a competitive environment as Capitol Hill.
Gretchen: I also feel that the overall progression of the disease year after year is a challenge we all face. We move a little slower, we speak a little softer, we get tongue-tied a little easier. On the other side of that coin, we know that doing what we are doing with PAN makes a huge difference, and I have often likened our PAN Forum to having an intravenous line of Sinemet -- it keeps us going, encourages us to continue to fight and brings us all together in solidarity and support.
Michael: I also feel another challenge we face as advocates is overcoming the stereotype of what and who we represent. We represent a network of grassroots advocates from all over the U.S. on behalf of the one million people living with PD on a variety of state and federal issues from NIH funding to FDA reform.
CB: Can you share with us how you’re using social media in your advocacy work?
Michael: To us, social media is a very important tool in our arsenal but does not replace standard protocol for reaching out to Members of Congress, or as a tool to recruit new advocates. In our experience, a complementary variety of approaches works best. All of Florida's Members of Congress have Facebook pages and some have Twitter accounts. The secret to my success with social media is to take an interest in what your Member does in social media, and how they prefer to engage. On Facebook, I “Like” and comment often on issues unrelated to PD but that our Member feels is important. And, it’s really important to be respectful and never argue! As an example, Rep. Dennis Ross posted on Facebook not long ago: "Proudly wearing a domestic abuse awareness ribbon on the floor of Congress today." So I replied, "Congratulations Congressman, would you ever wear a Parkinson's awareness pin?" His reply was, "Sure, I would be proud to." A phone call to his office to say someone from PAN would be delivering one for him was how we completed that interaction, and it was a success.
As an advocate recruiting tool, social media is extremely valuable. For example, I learned through Facebook how many of my friends who have PD or want to assist with advocacy actually live in Florida. These people can be trained to become advocates and future PAN advocate leaders.
But, again, I have to reiterate that you can’t just rely on social media alone. It is just one resource of many, and we very often have to rely on traditional methods of communication such as phone calls, letters, and emails.
CB: Have you found email to be a reliable way to reach out to your elected officials, or is it still important to make phone calls?
Michael: Yes and yes! I have found the best way to communicate with our Member of Congress and congressional staff is through email. That being said, phone calls are still important in relationship-building, to state a position, verify information, get up-to-date status checks, and confirm appointments in the district offices. Other complicated positions or issues to discuss can be done either in person or by email.
CB: What advice do you have for people with Parkinson’s who want to become more involved in the community?
Michael: Just do it! We recognize people, regardless of our obvious differences, possess a multitude of talents and skill sets. PAN is organized to recruit, train, encourage, equip, and act in accordance with its mission to encompass all for the benefit of those living with Parkinson's.
Gretchen: Awareness and advocacy leads to understanding. We know that it would be very easy to sit at home feeling sorry for ourselves with this disease. We also know that is NOT what we need to do. I encourage anyone who wants to become a Parkinson’s advocate to start small: get involved with local organization, volunteer to help them whether it’s with a walk, a dinner, or an art show. Our advocacy is a daily thing. Sometimes it’s helping a person at the bank or a store learn more about us and understand more about PD. It could be doing a presentation for first responders to educate them on how to better help those with PD in an emergency. Or, sometimes, it’s sending emails and making phone calls to our Members of Congress. Not only does all of this help those of us doing the activity, it helps the bigger Parkinson's community across the country.
Thank you, Gretchen and Michael, for your continued dedication, amazing energy, and hard work. We are grateful for everything you do!