Seventeen years ago, when four Cobra loving friends held a picnic with some 20 or so of their Cobra loving friends, none of them could envision that it would turn into a full-fledged international annual Cobra Event and that over the following years 14 Cobra replicas would be raffled and $1,228,000.00 would be donated to the Cystic Fibrosis Foundation.
Early on, as the yearly event grew it became necessary to institute a charge sufficient to cover such things as food, entertainment, police escorts, and insurance to cover potential liability. It was decided that if any money was left over, they would donate it to a charity. Once it was mentioned that Dave Smith, owner of Factory Five Racing and a manufacturer of Cobra replicas, had a daughter Jenny suffering from Cystic Fibrosis, CF quickly became the charity of choice.
Cystic Fibrosis is what medical providers call an orphan disease, a disease that affects such a small percentage of the world’s population that pharmaceutical companies do not believe they could ever see a profit after spending the large amount of monies that it takes to develop medicines that fight CF. Currently, there are approximately 30,000 individuals in the United States that suffer from CF
Your past ticket purchases/donations have in part, helped the Cystic Fibrosis Foundation itself fund the development of 2 medicines, KALYDECO and ORKAMBI. KALYDECO benefits approximately 1,300 individuals that suffer from CF, while ORKAMBI helps an additional 8,500 or so. Neither drug is a cure but both dramatically improve the lives of those with CF, allowing for a longer, healthier life.
The event, now known as the London Cobra Show, takes great pride in the dramatic improvement in the health of all children with cystic fibrosis-like Jenny. She is now doing well and is benefiting from ORKAMBI, a new CF medicine approved by the FDA in 2015.
ORKAMBI, KALYDECO, and SYMDEKO are produced by Vertex Pharmaceuticals, Inc., where Jenny recently toured their facility. Her older sister Nicole made the tour arrangements for her. Nicole having graduated from Babson College this past spring is now working in the finance department at Vertex in Boston, MA.
Jenny graduated this year from Barrington High School in Rhode Island and is attending Saint Anselms College in Manchester, NH where she is a freshman. Jenny spent the past summer working at Factory Five Racing, traveling to Michigan and hiking in Maine with her eagle-scout boyfriend.
CF is a very challenging disease to live with and everyone that has purchased raffle tickets or participated in any of our London Cobra Shows should take personal pride in the dramatic health improvement of those individuals like Jenny that are helped by the CF drugs. It is our hope that your 2018 raffle ticket purchases/donations help the Cystic Fibrosis Foundation reach their goal of finding a cure for CF within our lifetime.
NOTE: Kalydeco was FDA approved in 2012, Orkambi in
2015, and Symdeko was just recently approved in 2018.
Seventeen years ago, when four Cobra loving friends held a picnic with some 20 or so of their Cobra loving friends, none of them could envision that it would turn into a full-fledged international annual Cobra Event and that over the following years 14 Cobra replicas would be raffled and $1,228,000.00 would be donated to the Cystic Fibrosis Foundation.