April is Parkinson’s Awareness Month and the California Institute for Regenerative Medicine (CIRM) is joining the campaign to #Take6ForPD—take 6 minutes to raise Parkinson’s awareness and highlight our commitment to funding research for the disease. 

In addition to highlighting our commitment to funding Parkinson’s research, we’re giving patients and patient advocates the opportunity to share their stories and experiences.

In this blog, CIRM Board Member David Higgins shares why spreading awareness of Parkinson’s is important to him.

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Dr. David R. Higgins grew up in West Virginia with four siblings. He earned his Ph.D. in molecular biology and genetics from the University of Rochester, followed by a postdoctoral fellowship at the National Cancer Institute before moving to San Diego in 1990 to work in biotech.

In December 2011, Higgins was diagnosed with Parkinson’s. Since then, he has advocated for people with Parkinson’s and their caregivers. He uses his personal experiences to guide this advocacy work, focused on improving quality of life issues through education, support, training, networking, and promoting increased research funding to find a cure.

He currently serves as the Parkinson’s patient advocate member of CIRM’s governing board.

What is your personal connection to Parkinson’s Disease (PD)?

For me, Parkinson’s disease (PD) is a family legacy. My maternal grandmother suffered from PD and participated in some of the earliest Levodopa clinical trials held in the late 1960s.

In early 2014, my mother died with Lewy Body Dementia. My maternal uncle and great uncle also suffered from PD. In December 2011, I was diagnosed with PD, completing the Parkinson’s Trifecta: care partner, scientist, and patient.

Additionally, in my biotech career, I worked for a company that is developing a gene therapy product to treat PD. This product is currently in human clinical trials in Europe.

What do you want people to know about PD?

PD is the second most common neurodegenerative disease, behind only Alzheimer’s disease in prevalence and with a rapidly growing incidence. Currently, there are about 1 million people in the US diagnosed with PD.

PD is unique because we know a lot about its underlying defect. Several factors likely influence whether you develop PD. The most common model is a genetic predisposition to PD that exists in some people. If a person with a predisposition to PD is exposed to certain environmental factors, then development of the disease follows.

However, not every person who follows this pattern will develop PD. There is a familial form of PD that accounts for about 10% of the diagnosed cases. These tend to manifest earlier in life — in the patient’s 20s rather than the usual 60s.

Several human genes are known to be involved. However, the list of so-called PD genes is not exhaustive. For example, about 80+ mutations have been associated with the development of PD in humans. So clearly the situation is more complex.

Why is it important to you to raise awareness about PD? 

It is critical that the stakeholders, PD patients, and California citizens understand the impact that new treatments and even a cure for PD could have:

• Social — Quality of life, decrease pain and suffering
• Medical — Decrease huge medical costs to society to support and care for chronic illnesses
• Economic — Positive impact on the economy by maintaining and increasing productivity of a sector of society that is at its peak productivity
• Diagnosis — Fast, accurate differential diagnoses of PD and related movement disorders such as MSA and SMA.

Why is it important to continue investing in all PD research and treatments — such as those that improve certain symptoms — and not just research that aims at finding a cure?

The goal in PD research, as well as any new therapy, is that new and effective treatments are just as important—and likely more within reach—than the elusive Holy Grail cure. Effective treatments that slow progression or work to treat chronic symptoms are incredibly beneficial to patients and the kinds of treatments that patients ask about most.

Why is it important that an agency like CIRM continues to invest in regenerative medicine research and treatment for PD?

Basic research and clinical development both need funding to better understand the disease and design human trials. Developing new therapeutics for PD and the research effort that supports it will require a huge multi-discipline collaborative effort and the financial funding to enable it. CIRM has the resources to assemble the needed collaborative effort and is uniquely positioned to build the appropriate collaborations.

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To date, CIRM has invested more than $60 million to help Parkinson’s research progress from basic or discovery through clinical trials. To learn more about CIRM’s investments in finding treatments for the disease, visit this page on our website.