ALS awareness has undoubtedly been enhanced as a result of a number of high profile individuals being diagnosed with the disease. Lou Gehrig and Stephen Hawking are two names that immediately spring to mind for most people.
However, one individual who achieved so much in terms of increasing awareness of ALS, despite not being a high profile public figure, is Pete Frates. If you do not recognise the name, you’ll probably be aware of the Ice Bucket Challenge which he helped transform into a worldwide phenomenon.
Unfortunately, Pete passed away on the 9th December 2019. He was 34 at the time. A family statement put out just after his death, says a lot about the man himself and is his fight to raise money for ALS research and general awareness of the disease:
“Remarkably, Pete never complained about his illness. Instead, he saw it as an opportunity to give hope to other patients and their families. In his lifetime, he was determined to change the trajectory of a disease that had no treatment or cure.”
When his funeral was held just a few short days after his death, 1,500 people came to pay their respects at St Ignatia of Loyola Parish in Boston.
The church was right next to the college where Pete first played baseball.
Pete Frates was an all-star athlete and captain of the college baseball team. He was a leader and inspiration for those around him and went on to play baseball professionally in Germany before returning to play in the USA amateur leagues.
In 2011, he was diagnosed with ALS.
A married dad with a 4-year-old daughter, Pete Frates is best known for his association with the Ice Bucket Challenge and did much to ensure its viral success on the internet. Without the help of him and his close circle of friends, we may never have heard of the challenge outside of Boston at all.
The Ice Bucket Challenge was not Pete’s idea, but when he heard about it he was eager to get involved. The challenge started in 2014, about two years after his own diagnosis and actually started with a much less ambitious approach.
When the wife of Anthony Senerchia, who had ALS, was nominated to do the Ice Bucket Challenge, it eventually came to the attention of Frates. He and his family and their circle of friends began taking part and posting videos. What had been relevant to a small group of people in Boston who wanted to raise money, soon began to spread.
The viral sensation suddenly had some very well-known people taking part. Celebrities who dowsed themselves in water included George W Bush, Vin Diesel, Oprah Winfrey and Lady Gaga.
In all, it’s thought that 17 million people around the world shared videos of themselves taking part in the challenge.
More importantly, estimates suggest that $200 million dollars were raised for research during the period when the challenge was running. Whilst some of the money was used to help support those who had been diagnosed with ALS, much went into research.
That funded research led to identification of a gene that may be involved in the disease. The research that was carried out could not have been done if the money from the Ice Bucket Challenge had never been raised.
Despite the severe nature of his illness and the impact that it would have on his life and his family, Pete never complained and spent a lot of his time helping others with the disease. His involvement with the Ice Bucket Challenge not only raised a huge amount of awareness with the general public, it raised millions that could be used for vital research.
If a cure for ALS is eventually discovered, there’s no doubt that Pete Frates will have played an exceptional and important role.
Shortly after his death, the ALS Association tweeted:
“Pete Frates changed the trajectory of ALS forever and showed the world how to live with a fatal disease. His efforts to lead the Ice Bucket Challenge had a significant impact on the search for treatments and a cure for ALS.”
The family have asked for donations to the Pete Frates Family Foundation which was set up to help those diagnosed with ALS to afford home care in the later stages of the disease.
Rest in peace, Pete.