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 research for Parkinson’s Disease, we’re also 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.
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 become an advocate 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 currently is 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 in that we know a lot about what the underlaying defect is. And there are likely several factors that influence whether you are going to 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.
There are a number of human genes known to be involved. However, identification of all of the so-called PD genes is not exhaustive. For example, there are about 80+ mutations that 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 stake holders, PD patients, 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 understand the disease better, as well as to design testing in humans. 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 put together the collaborative effort needed and is uniquely positioned to build appropriate collaborations needed.
To date, CIRM has invested more than $60 million in helping research for Parkinson’s progress from a basic or Discovery level through clinical trials. To learn more about CIRM’s investments in finding treatments for the disease, visit this page on our website.
One thought on “#Take6ForPD: CIRM Board member David Higgins shares why Parkinson’s awareness matters”
Hello. I am curious as to why cerebral palsy is never mentioned. My nephew is 34 yrs. old, born with cerebral palsy, unable to walk or speak since birth.It is awful for the patient and his family. 24 hr./7 days a week caregiving. It never ends and yet there is never anything said about cerebral palsy. Regards,Susan Girardin