Letter from the Editor, November 2016

Rachel MinnickThe weather is starting to cool and as fall greets us, it is a wonderful time to reflect on the events of the past year and begin to gear up for new and exciting opportunities ahead. I’d like to introduce myself as the new Editor of the Patients as Partners Newsletter. I’m thrilled to have the opportunity to share exciting news and updates about CISCRP through this platform and want to thank you in advance for your readership.

2016 has been a tremendous year of growth for CISCRP’s educational programs and patient outreach initiatives. Among our many initiatives, a few highlights: We held a record number of AWARE for All events this year, including our first international program in the UK; hosted two Medical Hero Appreciation 5K Events, both of which welcomed over 300 runners/walkers each; co-hosted the first “Inspiring Hope” Ideathon to generate innovative ideas to raise clinical research awareness; conducted thousands of free clinical trial searches for patients; participated in countless speaking engagements, webinars, and symposium; and distributed thousands of educational materials to sites and organizations world-wide.

This year has also seen significant growth in our Communicating Trial Results program and in our Patient Advisory Board services. More and more companies are turning to CISCRP for assistance in improving their patient engagement capabilities.

In 2017, we will be holding AWARE for All events in New Orleans, Seattle, Houston, Jacksonville, and in Manchester, England and Toronto, Canada! Check our upcoming events page for date announcements!
As a final note, I’m delighted to announce that CISCRP is moving! As our organization continues to grow and expand, we are excited to move into a larger office space within the Boston area. The move is planned for early 2017 and we will be sure to share our new address and location with our supporters as soon as the details are finalized.

As I reflect on an exciting year behind and ahead, I want to note that all of our efforts are made possible by you, our generous supporters, donors, and collaborators. We are so thankful for your dedication to helping us raise awareness and education around clinical research!

I wish you all the best and hope you will keep CISCRP in your thoughts.

Thanks for reading,

Rachel

Letter from the Editor, March 2017

Rachel Minnick

Dear Readers,

We are well into the New Year and 2017 is shaping up to be an exciting year for CISCRP, our educational programs, and our patient outreach and engagement initiatives.  I have some updates and information to share with you as we look to the year ahead of us.

This quarter’s newsletter will introduce a new “Supporter Spotlight” piece that we will include in each edition moving forward.  This will be an opportunity for us to feature a new CISCRP supporter and highlight their work and successes within the clinical research education and outreach space.  For our first spotlight piece, we are featuring Jennifer Byrne of PMG Research, who has been a long-time supporter of CISCRP.

As always, we have included our Medical Hero Spotlight piece, and this quarter we have the pleasure of introducing you to T.J. Sharpe, a Stage IV melanoma survivor, who shares his experiences with different clinical trials and how they ultimately saved his life.

We are delighted to highlight one of our growing Medical Hero Recognition initiatives, a program that includes publications in major national newspapers and one that helps to recognize and thank study volunteers for their participation in clinical research.

We have also included an article on CISCRP’s role in an exciting and important new grant project being spear-headed by the Lupus Foundation of America.  We are part of a team who is developing a new model for improving minority awareness and participation in lupus clinical trials.  Stay tuned for future updates on this ground-breaking initiative.

Lastly, we have some incredible ideas and options for how our community members and supporters can get more involved with CISCRP, be it through use of our educational materials or through creative ways to engage with us.  We want to work with you, as partners, in providing greater outreach and education to the clinical research community, patients, and the public.

In upcoming events news, CISCRP is gearing up for two Medical Hero 5K Walk/Run events on April 29th in Seattle WA and June 19th in Chicago, IL.  We are also hosting our first AWARE for All Clinical Research Education day of 2017 on May 12th in Houston, TX.   Be sure to check our Upcoming Events page for new AWARE for All city and date announcements, coming soon!

As we gear up for the year, I want to note that all of our efforts are made possible by you, our generous supporters, donors, and collaborators.  We are thankful for your dedication to helping us raise awareness about clinical research and the importance of clinical trial participation!

I wish you all the best and hope you will keep CISCRP in your thoughts.

Thanks for reading,

Rachel

CISCRP’s Educational Materials to Promote Greater Literacy and Awareness of Clinical Research

CISCRP’s Educational Center is a free online resource for learning more about clinical research and clinical trial participation.  The education center contains a wealth of information to inform patients and the public about clinical research, including FAQs, interactive videos, volunteer perspectives, charts and statistics, downloadable reference guides, and much more.  We encourage potential study volunteers to spend some time educating themselves about clinical research before making an informed decision to participate.  And we encourage sites and researchers to direct study volunteers to our site to learn more about clinical trial participation and the overall clinical research process.

Our education center is always growing and evolving to ensure that we have relevant and timely information about clinical trials available to patients and the public.  We are pleased to introduce a new set of digital brochures that will soon be available in the Education Center on the topics of “Taking Part in a Clinical Trial” and “Let Us Recognize and Thank Study Volunteers.”  These are intended to help patients and family members become more informed and educated about clinical research.  They can also be used as a reference by sites and research institutions.  These will be available to download so that patients may take them as a reference when speaking to their study staff about a clinical trial or to their doctor about clinical research participation options.  They will also be available in print form through the CISCRP Store.

These new brochures were developed in sponsorship with INC Research; a leading global contract research organization (CRO) (www.Incresearch.com).  Christine Phillips, MSc, PhD, Senior Director with INC Research comments, “INC is pleased to work with CISCRP to bring new educational pieces to the CISCRP Education Center and Store.  We plan to use these new brochures at our own sites to give patients access to more information about clinical trial participation and the importance of recognizing study volunteers as “medical heroes.””

CISCRP is pleased to provide these and other valuable resources to patients, family members, and the general public so that potential study volunteers can educated themselves and their support team on the clinical research process.  Providing clinical trial education is key to empowering patients to feel that they are engaged and valued partners in the clinical research process.

All of our educational brochures are available to purchase in print form through the CISCRP Store.  We also offer co-branding options for all of our Store materials for sites or companies who wish to add their logo and contact information to the material.  Contact CISCRP for more information!

We are always looking to expand our library of materials and encourage more companies to reach out to CISCRP to develop new educational materials.  Below is a listing of our current brochures and content.  If your company is interested in sponsoring the development of new content, please contact Rachel Minnick at [email protected] or 617-725-2750 x330.

Should I Participate
Should My Child Participate
African Americans and Clinical Research
Los Hispanos y la Investigacion Clinica
What is a Placebo and Why Are They Used in Clinical Trials
Debunking Common Myths About Clinical Trials
Taking Part in a Clinical Trial (new Store item)
Let Us Recognize and Thank Study Volunteers (new Store item)

Creative Ways to Support CISCRP

By Ellyn Getz

Our supporters have structured their philanthropic campaigns in many creative ways, from product licenses for educational content to point-of-sale programs where a specific percentage or dollar amount is allocated to CISCRP. We also hold many high-profile special events during the year and welcome business sponsorships.

In 2016, we received many exceptional and unique suggestions that companies implemented as ways to support CISCRP’s educational and outreach initiatives.

Here are just a few ways that a number of members in our Circle of Supporters built support for CISCRP into their budgets and campaigns:

Every Holiday Card Share = Donation to CISCRP
INC Research developed an end-of-year holiday card campaign to spread good cheer…while increasing clinical research literacy in the process. Every time their digital holiday card was shared, INC the donated $1 to CISCRP. Thanks to INC and their supportive community, they generated a $5000 end-of-year donation for CISCRP that will be put towards 2017 education and outreach programs.

INC card

 

USA Today Editorial Piece: In-Kind Marketing Support
Each year, CISCRP develops a full-page ad to thank study volunteers – Medical Heroes – in a USA Today supplement. In both 2015 and 2016, Praxis has donated in-kind marketing support to develop and publish this important educational content.

12  122

 

Piggy-Backing a Team-Building Activity, with Free Breakfast & Backpacks for All
DrugDev decided to take their Medical Heroes Appreciation 5K support to the next level in 2016. They exceeded their 100-person goal by inviting all of their employees and their families to participate in the Philadelphia-based 5K. DrugDev welcomed all participants by sponsoring a free breakfast and distributing branded backpacks as part of the 5K give-away packets.

001

 

Leveraging Current Marketing Momentum to Build Excitement
The Segal Institute not only shared their excitement to host sponsor an AWARE for All in Miami by sending an army of Segal staff to volunteer onsite at the program, covering parking for all attendees, and sending out a text message to their entire patient database with an invitation to be honored at the upcoming free educational program – they also donated public transit ad space that they normally used to promote their research program for a whole month leading up to the event.

Amplifying the Patient Voice – Hosting Global Road Shows
CISCRP hosts roundtables in the US and Europe to present new data and insights on public and patient attitudes and experiences, and since 2014, Acurian has sponsored 2.5 hour interactive roundtables, open to regionally-located professionals. Recently, Acurian proposed hosting onsite meetings at pharmaceutical company headquarters, as a session during a company-wide conference. The two teams have co-presented to five different companies in the past year, offering robust data analyses and application to aid engagement decisions among clinical operations teams.

Further Incentives to Participate in Online Industry Surveys and Visiting Booth at Conferences
Advanced Clinical conducts a number of industry surveys on innovation and technology. As a further incentive for individuals to participate, Advanced Clinical promotes offering a donation to CISCRP on their behalf. Additionally, Advanced Clinical invites individuals to their exhibit booth at trade conferences and offers to give them a Medical Hero button as well as make a donation to CISCRP on their behalf.

How Can We Count on Your Help and Creativity in the New Year?
CISCRP is looking to connect with new supporters for 2017/2018 patient-engagement initiatives. We have a number of ideas – like hosting a team-building, highly-visible 5K on your company’s campus, sponsoring AWARE for All events abroad, developing new educational content and programs, etc. – and we welcome your creative and innovative ideas as well! To start the process and discuss ways in which your company can support our mission of engaging patients as partners in the clinical research process, please contact [email protected] or call 617-725-2750 x320. We can’t wait to work with you!

Supporter Spotlight: Jennifer Byrne of PMG Research

737_pmg_event_2.19.16CISCRP is fueled by the energy, involvement, and dedication of our supporters and volunteers, without whom we could not provide the educational resources, programs, and initiatives that support our mission.  We are very pleased to be spotlighting one of our long-standing supporters, Jennifer Byrne of PMG Research.  Jennifer has over 25 years of experience in the clinical research site sector and is also co-founder of the non-profit organization Greater Gift initiative (GGI), whose mission is to provide life-savings vaccinations to children in developing countries.

Through both PMG Research and GGI, Jennifer has facilitated generous donations and support for CISCRP’s public education and awareness initiatives, including our annual USA Today Thank You to Medical Heroes, our free clinical research education AWARE for All events, our Medical Hero Appreciation 5K events, and the 2016 “Inspiring Hope” Ideathon.  Jennifer also serves on CISCRP’s volunteer Advisory Board where she works to provide guidance and new ideas for our organization’s activities and programs.

Jennifer explains that her passion for clinical research started unknowingly at an early age, when her high school friend was diagnosed with advanced brain cancer.  He was told that he had no chance of survival and that his death was imminent.  However, despite this bleak prognosis, he enrolled in a clinical trial and he told Jennifer that this trial was his last hope.  Jennifer reports that her friend not only graduated with their senior high class, but also married the love of his life, and that she plans to see him soon at their 35th class reunion!  From this experience, Jennifer recognized that she wanted to pursue a career that would allow her to be part of promising this same hope to others.

Upon graduating from Texas A&M, Jennifer joined a small research site in Texas and began her career as a research coordinator.  She shares that this first job taught her a great deal about the importance of listening to and learning from her patients, her colleagues, the physicians, and the trial monitors. After 3 years of experience as a coordinator, Jennifer connected with one of the original founders of PMG Research, Charles Hauser.  Charles offered Jennifer the opportunity to move to Winston-Salem, NC and help grow the site beyond a staff of 6.  Jennifer says, “I am forever grateful to Charles for seeing something in me that I did not see in myself, at that time and the energy and investment in pushing me to widen and deepen my abilities and grow to be more competently confident.”

At the end of March, Jennifer will be stepping down from her role as CEO of PMG Research to immerse herself in other clinical research enterprise initiatives.  As Jennifer states, “this is not the end of my research journey, but rather a new chapter.”  Jennifer’s passion for her work is fueled by both the patients and the professionals involved in clinical research.  For patients, she has seen thousands of volunteers who leave clinical trials more informed and empowered about their medical condition, generally having a better understanding for the need to be an active partner in their own care.  As for professionals, Jennifer believes that the research sector draws service-oriented clinicians who genuinely want to be contributors to making the world a better place.  Working with both the patients and professionals has created a dynamic and inspiring environment for Jennifer to be a part of!

Over the course of her career, Jennifer has seen an amazing progression towards educating and engaging patients in the clinical research process.  There are of course some challenges she hopes to see the industry continue to address: lack of trust for the pharmaceutical industry, improving the public image of clinical research, lack of understanding of the overall drug development process and how clinical research fits into that process, and the narrow view of the total value proposition of clinical research involvement and motivations.  For this last one, Jennifer points out that often times it is viewed that people participate in clinical research for one reason or another, but she argues that most people participate for several reasons (ie. for better access to the newest treatments AND to improve the future of medicine and science).  Expanding the value proposition of clinical research participation can help create a more receptive environment for both patients and the research community.

Jennifer recognizes that organizations like CISCRP have been successful in addressing many of these challenges and she feels optimistic that the entire enterprise will continue to move towards a more educated and informed public and clinical research community.

Jennifer is quick to comment that the highlight of her career has been the people – her colleagues, the patient volunteers, the researchers, the CROs, and the pharmaceutical companies.  “I am most grateful for the long term bonds that have been created over the past 7500 trials conducted during my tenure at PMG.”  She believes that it is team work and collaboration, built on a bedrock of high standards and discipline, which drives excellence and value for the clinical research system at large.

As for the next chapter of her career, Jennifer plans to devote more time to causes that she loves, such as CISCRP and GGI, advancing the visibility of clinical research and advancing efforts to better thank and acknowledge both patients and professionals dedicated to contributing to the advancement of human health.  She also hopes to work alongside innovators to bring more value to the drug development process and create better partnerships between healthcare and life sciences.

We want to thank Jennifer, PMG Research, and GGI for their dedication to CISCRP’s mission!  Supporters like Jennifer are the reason that we can continue to provide greater awareness and education around the importance of clinical trial participation.

We will spotlight a different volunteer in each Newsletter, so stay tuned for new features each quarter.

 

CISCRP’s USA Today Advertisement Sends a Nation-Wide Thank You to Medical Heroes

Medical Heroes are study volunteers who give their time, energy, and dedication to participate in clinical trials.  Their gift of participation deserves recognition, as it contributes to the advancement of medical knowledge for future generations.  From a young age, we are taught that when you receive a gift, you should express your gratitude.  But how can we possibly thank all of the millions of Medical Heroes who participate in clinical research each year, most of whom we will never meet or know?

CISCRP’s answer is through an annual initiative that we have established, placing clinical research supplements in major newspapers to go our every other quarter.  These supplements include editorial pieces on clinical research, Medical Hero spotlights, and a Thank You advertisement to show appreciation for Medical Heroes who participate in clinical trials.  To date we have reached over 7 million people with our most recent supplements.  This initiative is part of our Medical Heroes campaign, and one that directly supports our mission to engage patients as partners in the clinical research process.

Our most recent initiative included a Thank You advertisement on the back cover of the November 2016 USA Today supplement, sending a clear message that without Medical Heroes, we would not have the important, and often life-saving, medicines and therapies that millions of people rely upon each day.

111

This year, we had a record number of sponsors to support the development of the advertisement, all of whom who were eager to engage in patient-centric activities like this one.  A special thanks goes out to our two top sponsors, Biogen and Janssen, for their generous donations to the initiative.  We would also like to recognize and thank our other generous sponsors of the advertisement:  Otsuka Pharmaceuticals, Acurian, Greater Gift Initiative, Horizon Pharmaceuticals, DrugDev, Clinical Performance Partners, Inc., PMG Research, Benchmark Research, Association of Clinical Research Professionals (ACRP), Segal Institute for Clinical Research, UC Irvine Institute for Clinical and Translational Science (ICTS), Clinical Trials of Florida, LLC, and The Institute for Memory Impairments and Neurological Disorder

CISCRP will be publishing two more supplements like this in 2017, targeting USA Today and The Wall Street Journal or the New York Times.  If you are interested in learning about how your organization can support this initiative, please contact Rachel Minnick, [email protected] or 617-725-2750 x330.

CISCRP Works with Lupus Foundation of America to Help Improve Minority Participation and Awareness in Clinical Trials

By Rachel Minnick

Lupus is a chronic, often devastating, autoimmune disease that can affect and damage different parts of the body.  Currently there is no cure for lupus, however, there are treatments that focus on controlling symptoms and minimizing flare-ups.  More than 16,000 new cases of lupus are reported annually in the United States and women of color are two to three times more likely to develop lupus than Caucasians.

For these reasons and others, the Lupus Foundation of America (LFA), a national non-profit organization whose mission is to improve the quality of life for all people affected by lupus through programs of research, education, support and advocacy, has been awarded a grant through the Department of Health and Human Services’ Office of Minority Health (OMH), as part of their National Health Education Lupus Program, called Improving Minority Participation and Awareness in Clinical Trials (IMPACT) for Lupus.  IMPACT for Lupus aims to create a national model to improve minority participation and retention in lupus clinical trials.

As part of the grant, the LFA has formed an Action Partnership (AP) team to provide guidance and expert opinion to support the execution of clinical trial education initiatives within IMPACT for Lupus.  CISCRP is honored to be part of the AP team and is working alongside the LFA, National Black Church Initiative, Tufts University, AAFP, lupus experts, and other health organizations to provide insight and expertise in the areas of identifying and implementing successful clinical trial participation education and initiatives within minority populations, specifically African Americans with lupus.  CISCRP’s role on the team is to provide expert guidance on the development and dissemination of appropriate educational and training materials to support the model.  CISCRP is also contributing methods and ideas for how to create greater awareness of clinical research and clinical trial opportunities within minority and under served populations.

Trish Davidson, Senior Director of Education and Research at LFA, comments “We are pleased that CISCRP can offer insight on clinical trial participation trends and engagement ideas as it relates to African Americas and lupus trials.  By bringing CISCRP onto the Action Partnership team, we hope to utilize their expertise and experience in implementing effective clinical trial awareness methods.”

The ultimate goal of IMPACT for Lupus is to develop and implement a successful clinical trials education program that will enhance recruitment and retention and encourage minority and/or disadvantaged populations, impacted by lupus that are underrepresented in clinical research, to participate in clinical trials.  CISCRP is proud to be supporting an initiative that will help those affected by lupus, and our hope is that we can provide greater awareness of treatment options to those who are struck with this unpredictable and devastating disease.

For more information on the Lupus Foundation of America please visit www.lupus.org.

 

A Young Father Opts for Clinical Research When Standard of Care is “Not Acceptable”

By Shelly Reese

????????????????????????????????????

Like any father of a newborn and a toddler, T.J. Sharpe assumed his fatigue was due to sleepless nights. So when a sudden high fever sent him to the emergency room in August 2012 he was blindsided by the diagnosis: his cancer had come back.

Twelve years earlier T.J. had had a stage 1B melanoma removed from his chest. The procedure had gone well, and T.J. had been careful about his sun exposure ever since. But the health scare he thought was behind him was back with a vengeance: his cancer had metastasized. Scans showed he had spots on his lungs, tumors in his liver and spleen, and a large mass on his small intestine, which was causing internal bleeding.

T.J. spent 16 days in the hospital and had the tumor surgically removed, but when the oncologist spoke grimly about what he might expect from standard of care treatments, the young father decided it was time to chart a new course.

“He told my wife he’d be surprised if I was around in two years,” recalls T.J. “Standard of care was not acceptable. I needed something that was going to give me the best chance of a long-term response. I wanted a chance to see my kids grow up. To see them go to college and get married.”

T.J. and his wife, Jen, sought four more medical opinions, ultimately settling on an experimental immunotherapy treatment at Moffitt Cancer Center in Tampa. The family rented a house nearby so T.J. could undergo the new regimen, which involved a combination of immunotherapy and tumor-infiltrating lymphocyte (TIL) harvested from a tumor on his lung. The trial was a challenge: T.J. developed diverticulitis, which required a colostomy, and ultimately he did not respond to treatment.

“I was the first to try this, and I was the first to fail it.”

With the help of a friend at the Melanoma International Foundation, T.J. found a new trial at Holy Cross Hospital just miles from his home in Ft. Lauderdale and it was accepting new participants.

Although the local cancer center did not have Moffitt’s size or reputation, “They had the drug, which meant we could started right away, and we could move home,” says T.J. “That was important. It was a decision not to let our lives be completely run by my diagnosis and treatment.”

Soon after T.J. received his first dose of Merck’s lambrolizumab, an investigational antibody therapy later renamed pembrolizumab. His reaction was profound and almost immediate. Within a matter of weeks his tumors had shrunk by half.

Today T.J. blogs for the Philadelphia Inquirer’s web site about his experience. Every three weeks he continues to undergo a 30-minute infusion treatment of pembrolizumab, which has since earned FDA approval. Since starting the trial he has experienced occasional fatigue and nausea, small patches of vitiligo (a loss of skin pigmentation) and a painful case of shingles. Despite the side effects, he says he generally feels better than he’s felt in years.

Best of all, at 41 he’s able to live his life the way he wants.

“I coach both kids’ soccer teams,” he says happily. “Four and a half years ago if you had told me, ‘You are going to end up spending your time running from field A to field B with a bag of soccer balls.’ I would have thought, ‘That’s a pretty good ending to the story.’”

Throughout his journey T.J. has had to make difficult choices, first in rejecting standard-of-care therapy and later in deciding to leave a highly regarded cancer center. Researching his options, seeking additional opinions and doing his homework enabled him to make the right decisions, he says.

“To anyone with a serious diagnosis I would say, ‘Be your own advocate.’ It sounds cliché, but ultimately the decisions on treatment are yours alone to make. You will consult with very smart doctors, but your health is yours and yours only,” he says. “An informed patient that has been able to get more than one opinion and understands the diagnosis knows what their options are and can make the right decision for them.”

Letter from the Editor, March 2017

Rachel Minnick

Dear Readers,

We are well into the New Year and 2017 is shaping up to be an exciting year for CISCRP, our educational programs, and our patient outreach and engagement initiatives.  I have some updates and information to share with you as we look to the year ahead of us.

This quarter’s newsletter will introduce a new “Supporter Spotlight” piece that we will include in each edition moving forward.  This will be an opportunity for us to feature a new CISCRP supporter and highlight their work and successes within the clinical research education and outreach space.  For our first spotlight piece, we are featuring Jennifer Byrne of PMG Research, who has been a long-time supporter of CISCRP.

As always, we have included our Medical Hero Spotlight piece, and this quarter we have the pleasure of introducing you to T.J. Sharpe, a Stage IV melanoma survivor, who shares his experiences with different clinical trials and how they ultimately saved his life.

We are delighted to highlight one of our growing Medical Hero Recognition initiatives, a program that includes publications in major national newspapers and one that helps to recognize and thank study volunteers for their participation in clinical research.

We have also included an article on CISCRP’s role in an exciting and important new grant project being spear-headed by the Lupus Foundation of America.  We are part of a team who is developing a new model for improving minority awareness and participation in lupus clinical trials.  Stay tuned for future updates on this ground-breaking initiative.

Lastly, we have some incredible ideas and options for how our community members and supporters can get more involved with CISCRP, be it through use of our educational materials or through creative ways to engage with us.  We want to work with you, as partners, in providing greater outreach and education to the clinical research community, patients, and the public.

In upcoming events news, CISCRP is gearing up for two Medical Hero 5K Walk/Run events on April 29th in Seattle WA and June 19th in Chicago, IL.  We are also hosting our first AWARE for All Clinical Research Education day of 2017 on May 12th in Houston, TX.   Be sure to check our Upcoming Events page for new AWARE for All city and date announcements, coming soon!

As we gear up for the year, I want to note that all of our efforts are made possible by you, our generous supporters, donors, and collaborators.  We are thankful for your dedication to helping us raise awareness about clinical research and the importance of clinical trial participation!

I wish you all the best and hope you will keep CISCRP in your thoughts.

Thanks for reading,

Rachel

Empowerment Through Participation: A Parkinson’s Patient Shares His Advocacy Story

By Rachel Minnick

When Don Simmonds was diagnosed with Parkinson’s Disease at age 73, clinical trials were on the forefront of his mind. Upon his first meeting with his specialist, Dr. Goetz suggested that Don would be a good candidate for a clinical trial. A quick exchange with his wife Noreen made the decision to participate clear – “she said, ‘if you’re not going to do this, we’re going to have a talk,’” he said. “I didn’t want to have a talk so I signed up.”

Don describes Parkinson’s as a “highly individualized disease” – people with the disease can experience a broad range and severity of symptoms, leaving a lot to still be learned by doctors and scientists. Don is happy to step up and be part of that movement toward new treatments and a cure, saying it’s “the least [he] can do,” especially because the slow progression of his disease makes its effects “minimal” on his daily life.

Don feels empowered to do his part in the Parkinson’s research arena by participating in clinical trials. If he didn’t, he says, then who would? He shared a shocking statistic that resonates with our work at CISCRP; only 1% of Parkinson’s patients participate in research, he tells me. “I’m happy to be part of the 1%,” he says. “I may not be part of the wealthy 1%, but it’s this that really matters to me.”

And being part of clinical studies doesn’t just benefit the research community. Right now, Don is taking part in a 3-year study on cognition in Parkinson’s Disease patients, a topic that’s fascinating to him as he enters his final year in the study. “I’m curious to see my results. I feel pretty sharp so it will be interesting to see if I’ve lost some cognition during the past few years.”

Aside from his role as a clinical trial participant in more than 7 studies, Don does even more to support research by volunteering as an advocate for the Parkinson’s Disease Foundation (PDF).

Shortly after his diagnosis, a chance to complete training and become a PDF Parkinson’s Advocates In Research (PAIR) member provided him the unique ability to connect with other People with Parkinson’s across the United States and spread information about the disease with others in support groups and in public places like hospitals and libraries. A minister in his younger life, Don enjoys the opportunity to speak out about important issues and help those who share a similar struggle.

Don – with Noreen by his side – does his important work in his local Chicago area and around the country. They attended the World Parkinson’s Congress in Portland, Oregon in September, and Don has shared his story at numerous meetings and events, including CISCRP’s AWARE for All Chicago program in 2015.

Don hopes to keep “pitching in” and doing what he can to support Parkinson’s research. “It’s rewarding,” he says, to know that just one person can make a difference – for the advancement of medicine and for the millions of other People with Parkinson’s who benefit.