As we get closer to April, we need to start thinking about what can we do to educate the general population and our governments about how Parkinson’s impacts not just our lives, but the lives of so many people around us. Think of it as ever widening concentric circles with you at the center, then your families, your friends, your communities and beyond.
For far too long, the Parkinson’s community has sat back and watched as other groups have moved forward in their efforts to find more funding for a cure. This year, we are finally looking at what has worked for others so that we can go to Congress to request more funds for research and to make our Parkinson’s drugs more affordable, especially for those with limited incomes. Many of us may spend upwards of $500 a month for our meds, which is definitely a hardship for many, And then there is the pesticides issue. Pesticides such as Paraquat, a known toxin to the brain, are still in use in the United States, even while banned in other countries. One bizarre situation is that the Paraquat used in the US is manufactured in the UK, even though it is banned for use in that country.
A global alliance of people with Parkinson’s, our partners and friends
Last summer, Ray Dorsey MD, Todd Sherer PhD, Michael S. Okun MD and Bastiaan R. Bloem MD PhD published the book Ending Parkinson’s Disease which is a call to action for the PD community. In response to the book, PD Avengers, was created. PD Avengers is a global alliance of people with Parkinson’s, our partners and friends, standing together demanding change in how the disease is seen and treated. This is not a fundraising organization but rather an advocacy group whose goal is to unite 50 million voices to prove Parkinson’s matters and to build a sense of real urgency to end Parkinson’s. to find more money for research, to ban pesticides which threaten to increase the numbers of PD sufferers to Pandemic (our new favorite word) levels in the next 30 years, and more. They looked at what worked for other groups and set a plan in motion.
Give a Dime
The first major campaign involving the public was original March of Dimes campaign which urged people to send a “dime” to President Roosevelt. They flooded the White House with dimes for “The National Foundation for Infantile Paralysis“ which had been founded by the president in January 1938 to raise money for treatment of Polio around the world. Radio star Eddie Cantor took this little known organization and started a fundraising campaign that he called The March of Dimes. Thousands of people responded with cards and letters each containing a dime. This “Silver tide” that swamped the White House raised more than $85,000!
Other successful campaigns have put the spotlight on other relatively rare diseases to raise millions of dollars from the general public. The AIDS Hospice Foundation was created in 1987 to provide hospice for the growing numbers of AIDS patients. They quickly mobilized people all over the world to raise money for research. New medications became available to manage the disease and help people live better lives with AIDS that within 3 years, the name was changed to The AIDS HealthCare Foundation. Since 1987, over $1.3 billion has been raised.
And who can forget the Ice Bucket Challenge? We saw person after person pour a bucket of ice water over their heads to raise money for ALS. The remarkable thing about this campaign is that it brought attention to a disease that is so rare that many of the people who participated had never known anyone with ALS.
The Red Letter Campaign
Last week, urged by the PD Avengers, the Parkinson’s community was asked to swamp the White House again, this time with a flood of red letters with messages inside stating “Why I Give a Dime about Parkinson’s”. At least 14,000 red envelopes and cards were distributed and mailed out on March 16. In addition, many people made statements on Social Media to again reach out to a broader community. This campaign will continue as we approach Parkinson’s Awareness month. If you have not yet sent your red envelope, or joined PD Avengers, go to their website now.
What can you do during Parkinson’s Awareness Month?
First, if you have not yet joined, sign up to become a PD Avenger. And encourage friends and family sign up too. The more voices we have, the louder we will be.
The Parkinson’s Foundation has a number of activities that you can participate in as well. Start by taking the #KnowMorePD quiz. Then check their page Parkinson’s Awareness Month for other things that you can do.
Check out the other major Parkinson’s Organizations too. They all have something that you can participate in during April.
And if you have not sent out your red letter, do so today!