Congratulations to Steve DeWitte and Israel Robledo, Patient Leaders, The Cure Parkinson's Trust

There are phrases we come to adopt, when consoling someone that has been presented the fact that they are in for a difficult journey, not unlike that of someone diagnosed with a progressive, degenerative, neurological condition such as Parkinson’s disease.

“Look at the bright side.”   Israel Robledo and Steve DeWitte know too well the deepest meaning of this phrase.  Many looked to them to provide the “Latest good news,………the bright side” of the Parkinson’s journey.

And for them, they credit Parkinson’s disease with elevating their unlikely partnership as internationally recognized Patient Advocates, to a rich personal friendship that has allowed each to be called upon to share the message of the value of collaboration in research, and the role the “patient voice” has in pursuit of a cure. They quickly point out, as is regularly reported, that each person’s journey with Parkinson’s disease is unique.   Steve’s symptoms of rigidity and light left side dominant hand tremors were first observed in November 2003, and misdiagnosed until March 2005, at the age of 48.  Israel’s symptoms of tremor, left side rigidity, and balance issues finally brought about a diagnosis at age 42.

Once diagnosed, each went into their “sponge phase,” in which pursuit of the answers to cause and cure became all encompassing.  Steve remembers reading some of Israel’s first blogs on the subject, and feeling encouraged by the common answers he derived as a fellow “Young Onsetter.”  They also credit the Parkinson’s Foundation (formerly the Parkinson’s Disease Foundation) for making their initial introduction through their participation as graduates of the PAIR (Parkinson’s Advocates in Research) Program.  Common pathways continued to appear, as each accepted various appointments to advocacy committees, and had the opportunities to share philosophies on both their personal battles and ways they could “make a difference.”

And so they did.

Israel was appointed to the Board of Directors for the Parkinson’s Action Network and was recipient of Murray Charters Award for Outstanding Service to the Parkinson’s Community, as well as The Milly Kondracke Award for Outstanding Advocacy.  His first published work entitled “The Day I Found Out Why ~ My Life’s Journey with Parkinson’s Disease” was released in 2016 and quickly became an inspiration to those seeking a better understanding of what was ahead.

Steve concentrated on building a regional network of People with Parkinson’s (PWP) advocates to support the PWP inclusion movement.  The Connecticut Advocates for Parkinson’s grew from 8 people at its inception to over 160 active members.  Alongside two major local support groups and a growing number of “believers,” Steve has initiated a transportation program that has contributed to over 150 PWP participating in Parkinson’s research studies. Steve was honored at a White House Ceremony and received the Champion of Change Award in April 2015.

Their association as “brother’s in the cause” was sealed when they were appointed as US Ambassadors to the 2013 World Parkinson’s Congress in Montreal.  It was through this association that they each met Tom Isaacs, co-founder of the Cure Parkinson’s Trust UK (CPT).  Each credits Tom with being the driving force behind the importance of a multi-stakeholder collaborative approach in the pursuit of disease modifying treatments for Parkinson’s disease.

Tom recruited Steve & Israel (along with Soania Mathur, CAN.) as patient leaders in the Parkinson’s Movement North America, and through that affiliation began serving as delegates in the LINKED Clinical Trials (LCT) initiative.  

The LCT initiative identifies potential new therapies for Parkinson’s disease from drugs approved to treat other conditions and that have demonstrated neuroprotective effects in preclinical experiments. By using drugs that already have passed rigorous safety and toxicology trials, LCT aims to significantly cut the amount of time it takes for a potential treatment to move from the laboratory to clinical trials and, ultimately, to the patient. This approach also can reduce the cost of bringing new Parkinson’s disease treatments to fruition.

The expense of clinical trials seriously hampers translation from the lab to the clinic. More than 90 percent of drugs fail during development (Brundin et al 2013). Those that do pass early trials face a long road before they can be used to treat patients—it can take more than a decade and more than $1 billion to move a drug from development to the market

This is where LCT comes in. The program is sponsored by the Cure Parkinson’s Trust in collaboration with Van Andel Research Institute (VARI), and is chaired by Patrik Brundin, M.D., Ph.D., VARI’s Associate Director of Research and Director of the Center for Neurodegenerative Science.

Together, they assembled a committee of the most prominent researchers in the field, and invited representatives from pharmaceutical firms, patient advocacy groups, National Institutes of Health, and funders. This committee prioritizes promising new therapies for clinical trials in hopes of shortening the time it takes to get new treatments to patients.  

“It can feel intimidating to be in this room with the leading researchers, and wonder how we can possibly contribute something of significance without having a scientific background”, the duo agrees.  Fortunately, all in the room recognize the important role each plays and the strength that occurs through their collective contributions.  The LCT initiative has evaluated 120 compounds since inception 5 years ago, and currently have 8 of these in clinical trials in the United States and Europe.

Israel and Steve both agree that the “collaboration model” mirrors the spirit that is the framework behind the Unity Walk.

So, “look at the bright side” ~ As you walk through Central Park, you are not alone.  You have just made thousands of new friends, sharing the same interests as you…finding the cure.

Steve & Israel would like to thank their families, friends, fellow PWP, the many supportive stakeholders, The Parkinson Alliance and the Award Committee for their selection of the prestigious award.  They accept this award on behalf of the many advocates that are “making a difference.”