The recent ice bucket challenge that has raised awareness and funds for ALS has been a huge success. What may have been overshadowed by this success is the reporting of the first solid estimate of how many people in the United States live with ALS – 12,187. It may seem like a small number but it helps many – from families to policy makers – understand what we are up against in solving that disease.
While the estimates of people living with Parkinson’s disease are much larger than for those with ALS, the fact of the matter is that our community does not exactly know the real number.
The numbers range from a low of 430,000 to as many as one and a half million. The low number is based on oft cited research study conducted in the late 1970’s in a sparsely populated county in rural Mississippi. While the study was well done, it might not be a good idea to extrapolate those results to the ethnically and geographically diverse United States.
For the record, the Parkinson’s Disease Foundation believes the number is close to one million. That is an educated guess supported by recent epidemiology data. However, the point remains that the estimates we have remain quite imperfect.
Because knowledge is power and because a fact so basic as how many people have PD remains unanswered, PDF is stepping in to help. We are determined to provide an answer that we all can use with confidence.
With the PDF Parkinson’s Prevalence Project, we are working with a group of noted experts in PD epidemiology to see if we can improve our estimate. The group has been meeting virtually for many months, and will come together for its first major in-person meeting shortly. At this meeting, we plan to work out details on how to improve our estimates of PD prevalence.
We have many months of hard work still ahead but this represents an important step in knowing how many are affected by this terrible disease.