It takes big leadership and big ideas to manage PAN’s outreach and advocacy in the Lone Star state, and Israel Robledo is proving he and his advocacy leadership team are right for the job.
Born and raised in Midland, Texas, Robledo was diagnosed with Young-Onset Parkinson’s disease in 2007 at age 42. He became involved with PAN a year later as a Congressional Coordinator and has risen in the volunteer leadership ranks to become PAN’s Texas State Director.
An elementary school teacher by day, Robledo says “my life’s work starts when I get home and work on the issues I’m passionate about while I still can be of service to those in the Parkinson’s community who don't have a voice.” Robledo says his work as an advocate “allows me to look outward, which somehow minimizes my symptoms, and focus on getting people to clinical trials, supporting funding sources, and reaching out to clinicians and researchers to develop new therapies and eventually a cure for Parkinson’s.”
PAN’s Communications Director, Carol Blymire, interviewed Robledo to learn more about his advocacy work, his involvement with the Patient-Centered Outcomes Research Institute, and where he sees the Parkinson’s community headed in the next few years.
PAN: Israel, let’s start by talking about how vast the state of Texas is. What’s the Parkinson’s community like? Does it vary by city and town?
Israel Robledo: One thing that surprises me when I speak to people from other parts of the country is that they don't realize how big my state is in comparison to theirs. The drive from Midland to see my Movement Disorder Specialist in Houston is a nine-hour drive, one way.
The Parkinson’s disease (PD) community in Texas is warm and inviting and there is feeling of belonging to a special group of people fighting for the same cause. Right now, the Texas PD community is focused in the major cities but I'm hoping to see this change more as we take advantage of social media to connect with people in the rural areas of the state. I find that the more I work as an advocate, there are many people interested in getting involved but are unable to because of the availability of clinical trials in their area, which is another barrier to clinical trial participation.
PAN: Tell us about the other PAN advocate leaders in Texas, and how you all work together.
Robledo: When it comes to PAN advocate leaders in Texas, Joe and Nina Brown are some of the best there have been and have passed the torch to me, along with Corey King and Neil Jarrell. I'm excited about continuing outreach to find quality grassroots leaders that can help in other parts of the state. Texas added three congressional districts (now at 35) based on the last Census and continues to be very conservative overall. The biggest challenge with such a large number of Representatives is that there is little to no consensus and we have to continue to present our policy asks with the hope that we can change the perception that all we want is more money. The personal connection when we share our personal story about what it’s like to live with Parkinson’s is a most effective way to catch their attention. It’s more than just seeking funding. It is a real person living with an incurable disease.
PAN: What kinds of things did you do to learn more about Parkinson’s resources in Texas when you first started becoming an advocate?
Robledo: When first diagnosed in April of 2007, I went online to find anything and everything about PD. What surprised me the most was the limited amount of resources within our huge state. Bigger cities had organizations that went along with the medical centers but very little else in the form of resources. The American Parkinson Disease Association (APDA) had a presence with their support groups but very little else as far as direct help to people living with PD. About a year and a half into my diagnosis, my family, friends, and I decided to set up a public charity to serve the prescription and physician fee needs of people living with PD in the west Texas area. What has been interesting about our offering help locally is that many people with PD will call and want to know more about the disease and just want a real person on the other end of the line to visit with about what they are experiencing. We are often able to get people connected to prescription assistance programs for which they are eligible that they didn't know existed.
PAN: What is your relationship like with your Senators and your Representative? How often do you reach out to their staff on the Hill?
Robledo: My relationship with my Representative, Mike Conaway, is a good one because of his willingness to listen to the issues but also to explain his reasoning as to why he chooses a certain stand, which I respect. On the Senate side, the relationship is not as productive because of their stances, which hasn’t allowed for much give and take. When I reach out to the staff on the Hill every 2-3 months, plus Action Alerts as they come up, I remind them of the past support for different funding. By presenting our views consistently we can be that "squeaky wheel" that will eventually get attention because of the importance of what we stand for in our mission to make this disease a thing of the past.
PAN: You’ve been an active advocate for nearly five years with PAN. When you look back, what advocacy experiences stand out the most?
Israel: A couple of years ago as we walked the halls during our visits with congressional staffers on Capitol Hill, one of our Texas advocates pulled me aside and asked, "Does what we're doing here really make a difference?" I responded to her that it did make a difference. It so happened that the next visit was with staff from Congressman Conaway's office. As we sat in the waiting area, Congressman Conaway came out of his office, recognized me, and asked what I was doing in Washington. When I told him we were scheduled to meet with one of his aides, he called our group into his office and met with us himself. After our meeting, I looked over to the woman who asked me if these meetings matter; the smile on her face and the confidence she showed as we continued our visits showed me she now understood how important this work really is.
Robledo (L) with advocates Helena Camps, Samantha Elandary, and Congressman Mike Conaway (R-TX) in 2011
PAN: What advocacy role can family members or friends play that is different or unique in our community?
Robledo: I believe it is important for family members to become advocates because I have heard on more than one occasion that having a family member living with a disease gives them a purpose for getting involved, to the extent possible. There is a passion that comes from knowing someone that lives with an incurable disease and wanting to do all they can to promote awareness and education. My seven-year-old grandson has even become an advocate. He uses a tote bag I brought home from the PAN Forum a year or two ago as his backpack for school. I asked him if anyone ever asked him why he took that bag to school. He responded by saying that kids ask him what "Parkins Disease" is and he tells them that it is "like when you're scared and start shaking, but with Parkins Disease you're shaking but you're not scared." He has gone on to tell people who shake that they need to go to a doctor because if they have "Parkins Disease" they need medicine to help them to stop shaking. I've said that he is the world’s youngest advocate for Parkinson's disease awareness.
PAN: We know how active you are with PAN. Do you work with any of the other national Parkinson’s organizations?
Robledo: My involvement as an advocate with organizations include volunteering as a Parkinson’s Disease Foundation (PDF) Research Advocate, Michael J. Fox Foundation Fox Trial Finder Ambassador, 23 and Me Ambassador, World Parkinson Congress (WPC) 2013 Ambassador, Chair of the Sub-Committee on Advocacy and Government for the WPC 2013 Program, and Parkinson's Movement Ambassador. My role with the WPC 2013 committees is an exciting one for me because of our task to bring about more advocacy-related presentations to the program and also to include more advocates in all aspects of the planning and involvement at the Congress in Montreal. The Program Committee, which includes some of the best PD researchers in the world have consistently said that the voice of the person with PD is such an important one that it has to be listened to and included in the planning of the program.
PAN: You play an important role with the Patient-Centered Outcomes Research Institute (PCORI). What kind of an impact do you think you’ve had?
Robeldo: My good fortune of getting involved with PCORI came as a result of PAN's outreach when PCORI sent out their request for patient/stakeholders reviewers. My involvement with PCORI as a patient reviewer has been exciting and rewarding because of the training on how to review applications that seek research funding. The opportunity as one of three non-scientists in the same room as researchers, presenting our summaries of the applications, discussing the strengths and weaknesses of the proposals, and having my vote have the same weight as all the other representatives in the room lets you know how important the voice of the patient is to PCORI. PCORI is a work in progress, but from all indications there is a continued commitment to change the way research is done as we know it. To include the patient in all aspects of the research, from initial planning to dissemination of research results, is pretty powerful.
PAN: You are a very busy advocate leader! What do you do in your free time, if you have any?
Robledo: I have found that as busy of an advocate that I have been, the organizations that I commit my time and effort to are doing some wonderful work and that any help I can provide for one organization dovetails with all the other organizations, which is very satisfying to me. I am humbled when asked to provide my input because there have been many advocates that have worked tirelessly through the years. If it were not for them setting the foundation and allowing the new advocates to share our views for the change we would like to see, all that we do would be for naught. As for free time, I read anything and everything I can get my hands on. I am following the Texas Rangers in their bid to win their first World Series title, rooting for the Dallas Cowboys to make it to at least the second round of the playoffs, and spending time with my horse, Toni.
Wife Chris, daughter Alisha, and Israel Robledo
PAN: What advice do you have for people with Parkinson’s, and their family and friends, who want to become more involved in the PD community?
Robledo: My advice for anyone who wants to become involved is to stay positive and find the role you are most comfortable helping with at whichever stage of the disease that you're in, or your loved one is in. There is room for all of us in this quest to make a difference. Much has been done but so much more has to be done in order to reach our goal. Our call to serve others should not stop as long as there are people suffering with this disease.
PAN: What are your hopes for the future for the Parkinson’s community?
Robledo: My hope is that we can find a way to stop people from suffering with PD. The future looks promising because, slowly but surely, the voice of the patient is being sought and respected. Advocates are speaking out for change, and the younger generation of researchers and Movement Disorder Specialists are open to truly listening to us and finding out that what we have to offer could effect a change.
Israel, thank you – and the whole Texas team – for all your hard work, persistence, and dedication to fighting for federal funding for Parkinson’s research and an improved quality of life for people living with the disease.
To learn more about how to become involved with PAN, visit our website  or contact Israel directly at firstname.lastname@example.org .