The Crowne Plaza Hotel, the host hotel used for the 2019 London Cobra Show will be closing soon for extensive renovations and will not be available as the 2020 LCS host hotel. After researching the various options available, the Columbus Marriott Northwest Hotel located at 5605 Blazer Parkway in Dublin, OH will be the 2020 LCS host hotel. The Columbus Marriott Northwest hotel is located approximately 2 miles south of the Crowne Plaza Hotel.

Due to the lateness of the 2020 Father’s Day, our 2020 LCS dates happens to fall on the same weekend as the Dublin, OH 38th Annual Arthritis Foundation Classic Auto Show. The Arthritis Foundation show is an extremely large 3-day car show close to the same area of Dublin as our host hotel. Due to this, hotels in the Dublin area will be extremely hard to get the closer we get to our show dates.

It is highly recommended that you reserve your hotel room for the 2020 LCS sooner than later. You may make your hotel reservation by calling the Columbus Marriott Northwest hotel at (614) 791-1000. Don’t be disappointed!

When making your hotel reservation, please request the London Cobra Show nightly rate of $119.00 plus tax. This rate applies through June 2, 2020, or until our room block is filled, after that time the special LCS rate will no longer apply and the nightly rate will be whatever the hotel has available. The Marriott’s LCS nightly room rate includes the following:

• Complimentary Parking.

• Complimentary breakfast.

• Complimentary Wi-Fi in the guest rooms.

The special nightly rate will also be honored three (3) days prior to and three (3) days after our show, pending availability.

This Marriott has a parking lot that is sufficient for our needs, so plan on trailering or driving your Cobra.  

2020 will be the 20th Anniversary of the Double Venom Spring Fling (DVSF) that became the London Cobra Show in 2005.

Please reserve your hotel room early so that you will not be disappointed by having to pay a higher nightly rate or find another hotel some distance away.

Stay tuned for additional and exciting LCS information as plans are finalized and the LCS website is updated. 

Looking forward to seeing you in Dublin/London on June 25, 26 and 27, 2020.

Published August 17, 2019

2020 will be a special year for the London Cobra Show (LCS), as it will be the 20th anniversary of the Double Venom Spring Fling (DVSF) that became the London Cobra Show in 2005.

Look for an exciting LCS in 2020, so save the dates of June 25 – 27, 2020. 

Posted 8/8/2019 

DigitalFusion Creative Technologies, Inc. is proud to introduce the Dave Friedman Archive. Digital Fusion has built an incredible website showcasing Dave Friedman’s original photography taken during his time working for Carroll Shelby during the 1960s. The archive features a curated selection of framed images for sale, as well as news and behind-the-scenes interviews. 

To go to the Dave Friedman Archive, click here.

Greg Dyro and Jon Moeller along with Dave Friedman, Carroll Shelby’s photographer, attended the 2019 London Cobra Show where Dave was the dinner speaker. At the dinner, DigitalFusion donated a framed Dave Friedman print that was auctioned off at the club’s Saturday evening dinner to raise additional money for the Cystic Fibrosis Foundation.

Dave exhibited select images from his archive at LCS.

Posted 7/24/19

The Crowne Plaza Hotel, the host hotel for the 2019 London Cobra Show will be closing for extensive renovations and will not be available to us as the 2020 LCS host hotel. After researching the various options available, the Columbus Marriott Northwest Hotel located at 5605 Blazer Parkway in Dublin, OH will be our 2020 LCS host hotel.

Information on room pricing and how to reserve your room for the 2020 LCS will be available on our londoncobrashow.com website in a few weeks. 

Posted 7/18/19

The 2019 raffle car was won by Anthony “Tony” M. from New Castle, PA and he was extremely excited about having the winning ticket. His first words, after hearing he had won, were HOLY S@$T! Tony said he purchased a single raffle ticket last year and another single raffle ticket for our 2019 raffle.

Tony and his father drove from New Castle and arrived in Columbus shortly after lunch on Saturday, June 29th to complete the required paperwork and take procession of the raffle car.

Tim Gary from FormaCar went over the various features of the Cobra with Tony. Tim also took Tony for a spirited ride in the private parking lot to demonstrate the capabilities of Tony’s new Cobra.

Several OCC members were on hand to meet Tony and watch the Cobra being loaded into Tony’s trailer and drive away.

Congratulations to Stephen J. from Fletcher, OH as the winner of our 2019 Diane Combs Commemorative Chocolate Chip Cookie Contest. Stephen had some formidable competition as he was competing against 11 over extremely delicious chocolate cookie bakers.

Perhaps we will be able to persuade Stephen to share his winning cookie receipt with everyone. If so, we will post his winning receipt on our 2020 London Cobra Show’s website.

The Ohio Cobra Club is proud to announce that our 2019 London Cobra Show raffle has allowed the club to donate an additional $90,000.00 to the Cystic Fibrosis Foundation for research. The 2019 donation raises the club’s total donations to $1,423,000.00.  

Everyone that has purchased raffle tickets or participated in our London Cobra Shows should know that they have played a role in the development of 3 cystic fibrosis medicines, Kalydeco, Orkambi, and Symdeko. It is our hope that the 2019 donation will help the foundation to find a cure for CF.

The winner of our 2019 raffle is Anthony M. from New Castle, PA.

More information will be posted once Anthony takes procession of his new Cobra.

On May 30, 2019, Vertex Pharmaceuticals Inc. announced that it plans to submit a new drug application to the FDA for VX-445 (elexacaftor) plus tezacaftor/ivacaftor (Symdeko®) in the third quarter of this year. If approved, the triple combination could eventually expand therapies that treat the underlying cause of CF to more than 90 percent of people with the disease.

The selection of a triple-combination therapy is a potentially transformative moment for the CF community and gives further momentum to our efforts to find effective treatments for all people living with cystic fibrosis. You can read more about this exciting development on cff.org. 

Today, November 27, 2018, Vertex Pharmaceuticals Inc. released the initial Phase 3 clinical trial data for one of two next-generation, triple-combination modulators currently being tested.

Positive results were announced today from late-stage studies of a potential triple-combination CFTR modulator therapy for people with cystic fibrosis. Vertex Pharmaceuticals Inc. released Phase 3 clinical trial data for two studies of the next-generation modulator VX-659 in combination with ivacaftor and tezacaftor. 

The first study tested this triple-combination drug on people with CF ages 12 years and older who have one copy of the most common cystic fibrosis mutation, F508del, and one minimal function mutation

Results stated that those who received VX-659 combined with ivacaftor and tezacaftor had a 14 percent increase in lung function compared to participants taking a placebo. Researchers believe that anyone with at least one copy of the F508del mutation -- regardless of their second mutation -- could benefit from next-generation modulators.

The second study included people with CF ages 12 years and older who have two copies of the F508del mutation. The trial compared the effectiveness of Symdeko® (tezacaftor/ivacaftor) to VX-659 combined with tezacaftor and ivacaftor. Participants who were given VX-659 combined with tezacaftor and ivacaftor had a 10 percent improvement in lung function over those who were only given Symdeko® (tezacaftor/ivacaftor).

VX-659 is one of two next-generation modulators currently being tested by Vertex. The results for the second modulator (VX-445) are expected in early 2019. It is anticipated that after these top-line clinical trial results are announced next year, Vertex will decide which of the two next-generation modulators they will submit to the U.S. Food and Drug Administration (FDA) for potential approval as a new drug. If approved, it is estimated that triple-combination CFTR modulators could bring the benefits of therapies that treat the underlying cause of the disease to more than 90 percent of people with CF.

“It is an exciting time for the CF community, as we approach a milestone that seemed impossible even just a few years ago. Today's announcement represents an important step in our journey to developing treatments for the underlying cause of this disease for all people with cystic fibrosis,” said Michael P. Boyle, M.D., senior vice president of therapeutics development for the Cystic Fibrosis Foundation. “We are enthusiastic about the clinical benefit VX-659 demonstrated in these studies and look forward to seeing how these compare to the other next-generation modulator in clinical trials, VX-445.” 

For additional information regarding the results of these clinical trials, please see the Vertex press release.

The Foundation is steadfast in its commitment to finding treatments for the underlying cause of the disease for people with nonsense and rare mutations who will not benefit solely from CFTR modulators, and to the continued development of treatments for complications of the disease. To learn more about the research the Foundation is supporting in these areas, please visit the Research We Fund section of cff.org.

Obituary for Dr. Daniel D. Semko RICHMOND, Ind. – Dr. Daniel D. Semko, age 69, of Richmond, Indiana, died Tuesday, October 2, 2018, at his home. Dan was one of the four (4) Cobra loving friends that were the founders of the Double Venom Spring Fling (DVSF) that would later become the London Cobra Show.

Born May 12, 1949, in Youngstown, Ohio, to John and Rose Cicciarollo Semko, Dr. Dan lived in this community most of his life. He served as a Fleet Marine Corpsman in the U.S. Navy, attached to the U.S. Marine Corps, Company 33, during the Vietnam War. Dr. Dan was a graduate of Marquette University and completed his podiatry training in Cleveland, Ohio. He, along with his wife, owned and operated American Foot Services for the past 38 years. Dr. Dan was a brilliant and very compassionate man. He didn’t know a stranger and would help anyone, without expecting anything in return.

Survivors include his wife of 35 years, Dr. Suzanne A. Haritatos-Semko; daughter, Jena (Rich) Hugart of Martinsville, Indiana; grandson, Deaglan Hugart; sisters, Jan Ross and Jill Shane, both of South Carolina; brother, David Semko of Ohio; nieces; nephews; and many friends.

He was preceded in death by his parents and brother, M. Jeffrey Semko.

The family would like to thank Reid Hospice for the loving care and support they gave to Dr. Dan.

A memorial visitation and time of celebration for Dr. Daniel D. Semko will be from 1:00 to 3:00 p.m. Saturday, October 6, 2018, at Doan & Mills Funeral Home, 790 National Road West, Richmond. Military honors provided by the Wayne County Honor Guard will follow at 3:00 p.m. at the funeral home.

Memorial contributions may be made to: Help The Animals, Inc., P.O. Box 117, Richmond, IN 47375 or Wolf Creek Habitat & Rescue, 14099 Wolf Creek Road, Brookville, IN 47012.

AmazonSmile is the same Amazon you know and have been using - same products, same prices, same service. The only difference is that Amazon will now donate 0.5% of the price of your eligible AmazonSmile purchases to the Ohio Cobra Club at no cost to you.

Please support the Ohio Cobra Club and their efforts to raise money for cystic fibrosis research by shopping at smile.amazon.com using our unique Amazon Smile login.

Thanks for your support of our efforts.

Did you miss out on getting your 2018 London Cobra Show souvenir shirt? If so, or if another member of your family would like to have one, then here is your chance to purchase a 2018 LCS show shirt. 

Your cost is $20.00 per shirt, shipped free of charge via USPS.

To order, please forward the following: 

1) Name

2) Mailing address,

3)    Phone number,

4) Number of shirts you desire, 

5) Shirt sizes and 

6) Check made out to the Ohio Cobra Club for the correct amount. 

Note: Available sizes are S, M, L, XL, 2XL AND 3XL.

Please mail your order to the following address:

Ohio Cobra Club 

PO Box 340498

Columbus, OH 43234

Thanks for your order and please allow 2 weeks for shipment.

We are pleased to announce the winner of our 2018 London Cobra Show raffle car is Larry K. of near London, OH. 

Larry took title to the Backdraft Cobra replica Wednesday evening. He said he had purchased an LCS tee-shirt at our Ohio Cobra Club booth, then went on down Main Street and let his 13-year-old granddaughter take 4 Cobra charity rides. While waiting for her to take her rides he purchased a single raffle ticket. As his granddaughter, Lexi stated: “My grandpa – he is so lucky.”

Our 2018 London Cobra Show and Raffle was another huge success, as we donated $104,500.00 to the Cystic Fibrosis Foundation, again designated for research into finding new medicines that fight CF. 

Over the years $1,333,000.00 has been donated for CF research. 

If you would like to see how your raffle ticket purchases are helping, please watch the talk that Emily gave on Friday evening of the 2017 London Cobra Show. To watch the youtube.com video, cut and paste this address into your browser - https://www.youtube.com/watch?v=5ijZzwFssew

Emily is the young lady that usually pulls the winning raffle ticket each year.

Thanks to Kalydeco and specialized care, Emily is now a cystic fibrosis survivor. She is currently an Early Childhood Education major at the University of Dayton (OH) and also cheers for UD’s football and basketball teams.  

Your raffle ticket purchases have in part, helped the Cystic Fibrosis Foundation itself fund the development of 3 medicines, Kalydeco, Orkambi, and the recently approved Symdeko.

ALLI’S STORY… 

My name is Alli Hile and I have a twin sister named Abbi. I am 17 years old and I have Cystic Fibrosis. Abbi does not. Thank you for what you are doing to raise money for this disease. I would like to tell you about my life with CF. When we were born we appeared to be very healthy babies. But, when Abbi and I were about 15 hours old, I started to have some trouble. I was moved to Nationwide Children’s Hospital and received emergency surgery. I was diagnosed with Short Bowel Syndrome and ultimately Cystic Fibrosis. I spent 116 days in the hospital – that time.

In the spring of 2008, my lung infections became worse and resulted in lung surgery to remove part of my right lung.  After that, I only had to go to checkups and a few sinus surgeries for the next 5 years.  I got sick AGAIN in the fall of 2013.  I was back in the hospital for 8 days to get IV antibiotics and lots of therapy. CF just gets worse as I get older. I’m a competitive dancer and I hate when I am not feeling well and must take it easy. I’ve worked really hard since I was 3 to be on the competition team, and lots of time CF gets in my way.  

 I have a war going on inside my body. As new symptoms appear, old ones become worse. My medicine shelf has become a medicine cabinet. I take approximately 40 pills a day, do chest therapy and breathing treatments 3 or 4 times a day and I have to eat 3,000 calories a day. It’s exhausting! I desperately just want to be a “normal” teenager. I used to ask my mom, when would my CF go away? I know now that it won’t.  

 In August of 2015, I took my first dose of ORKAMBI. This was when everything changed. After just a few months, I gained weight and started to finally look my age. But the real moment for me was realizing one day that it no longer felt like someone was standing on my chest. I had no idea that I wasn’t REALLY breathing like the rest of the world. ORKAMBI changed my life. I’ve only had couple minor infections since starting the drug and haven’t had a hospital admission in over 4 years. 

Today, I learned that I am a candidate for a new drug that is even more effective. I do not know what I would do without donors like the London Cobra Show or an organization like the CF Foundation. Thank you for making it possible for me to think about my future differently. CF is only going to be part of my story. 

 What’s next? Graduation, college, time with friends and of course…I’ll be dancing.  

Alli

We find ourselves at an incredibly exciting time in the CF community. We are moving the ball forward in any number of ways. Progress is happening. We are on the inexorable march toward a cure. 

 The most inspiring aspect of this progress is that I can feel it in my everyday life. Before introducing Orkambi -- a first of its kind drug that partially corrects the underlying causes of CF -- into my treatment routine, I would be sick every other month or so, meaning heavy-duty antibiotics, increased chest therapy, and symptoms normally associated with the flu (cough, fever, fatigue, etc.). In the four years post-Orkambi, I’ve been prescribed additional antibiotics only a handful of times, and my lung function has remained remarkably stable.

The following anecdote encapsulates this point. In 2016, I moved to Washington, D.C. from Columbus, OH for a new job (I'm back in Ohio now). One of my first tasks, obviously, was identifying a new doctor. So, I go to the Children’s Hospital in northwest Washington, and the doctor performs his examination and runs all of the various tests. At the conclusion, he stops, looks at me, and matter-of-factly states, “Mr. Hennessey, you’re really quite healthy.” 

And that’s the bottom line here, right? I’m quite healthy. It speaks to the promise of Orkambi and other drugs like it—that they can deliver genuine results that tangibly improve my quality of life. And, God willing, Orkambi is only the first rung of the ladder to an ultimate cure. Onward.

Matt Hennessey

NOTE: The London Cobra Show is a proud supporter of the Cystic Fibrosis Foundation and its research into finding a cure for CF. Cystic fibrosis affects some 30,000 individuals out of more than 300 million Americans. 

When the Cystic Fibrosis Foundation was established in 1955 people born with cystic fibrosis had a bleak future and often did not live long enough to start kindergarten. Due to the foundation's encouragement and funding of pharmaceutical companies to invest in CF-specific research, the CF medicines Kalydeco, Orkambi or Symdeko have been developed. Today, due to the advancement in these medicines, treatment, and care, more than half of the people with CF are 18 or older, attend college, getting married, and starting families.

The London Cobra Show’s donations are always donated to the Cystic Fibrosis Foundation and designated for research. The show's past donations have aided the Foundation in developing Kalydeco, Orkambi, and Symdeko.

THANK YOU - YOUR SUPPORT WILL DIRECTLY HELP THOSE LIVING WITH CYSTIC FIBROSIS.

This is exciting news  - The U.S. Food and Drug Administration on Monday, February 12, 2018, approved a new treatment for cystic fibrosis (CF). This new medicine will be available under the brand name Symdeko. 

The approval of Symdeko now offers more individuals that suffer from cystic fibrosis an important new treatment option and is a significant milestone in the Cystic Fibrosis Foundation’s research to find a treatment for every person with CF. All three cystic fibrosis medicines, Kalydeco, Orkambi and now Symdeko, address the underlying cause of cystic fibrosis, rather than just symptoms. 

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 that are now being helped by these three CF medicines. 

Our 2018 donation to the Cystic Fibrosis Foundation again will be designated for research into developing additional medicines for CF. Approximately 60% of the individuals that have CF may now benefit from Kalydeco, Orkambi or Symdeko. Hopefully one day soon, other medicines will be developed that allow everyone with CF to say - “I used to have CF.” 

Thank you for your raffle ticket purchases and helping to make a difference and bringing hope to all people living with cystic fibrosis. 

Please purchase your 2018 raffle tickets and maybe this year's LCS donation will help pay for the research needed to cover the remaining 40% of individuals that suffer from CF.

For additional information on cystic fibrosis, please go to cff.org

A little over two years ago Orkambi, the CF wonder-drug we’ve all heard so much about, was released into the open market. I started taking the medication not too long after the fact, and its effect on me has been nothing short of staggering. 

Prior to Orkambi my own health was constantly in flux. My teenage years were pockmarked with many long and difficult hospitalizations, and I struggled as my own lung function and well-being slowly declined. Life before Orkambi was defined by a horrible, omnipresent fear of my next hospitalization. It’s hard to imagine living a normal life when you’re saddled with that kind of fear, but thankfully I had an incredible support system to get me through those tough times. My parents, Karen and Daren, supported me in all aspects of life, whether it was getting me through long weeks in the hospital, helping me organize homework drop-offs with my school, or just trusting me to take charge of my own health. 

When I went on Orkambi two years ago I wasn’t prepared for what was about to happen. The medication provided a shocking amount of relief. I went from getting seriously sick every six months, like clockwork, to only getting mildly sick about once a year. Now, as I write this in January of 2018, it has been over three years since I was admitted to the hospital.

The fear that I had been saddled with for so long, that unnerving, always-present fear of going back into the hospital, it has since faded into the background. Orkambi didn’t miraculously fix every aspect of my life; I still catch a nasty cough every once and a while, and I still worry about my life going on pause to accommodate a hospital visit, but I now enjoy a peace of mind that I previously could never have dreamed of. 

I live an amazing life. I have a wonderful, beautiful fiancee that I will be marrying in May of this year, I have a career (something many with CF do not get to have), and I am surrounded by many wonderful friends and family who have helped me on this journey. 

The life I live is possible because organizations like the London Cobra Show continue to work tireless to fundraise and spread awareness about Cystic Fibrosis. Fundraising has an honest, real benefit to the people living with this disease, and I sincerely thank you for your time, effort, and money that has been spent on this wonderful cause.

Jenny started her freshman year at St. Anslems College in Manchester New Hampshire. She hasn't decided on a major yet but is enjoying the first year of college tremendously. 

Jenny's health has taken a step backward as is common for many CF kids the first semester of college and away from their homecare routines.  Jen spent Christmas break in the hospital for some IV antibiotic therapy to try to knock down a nasty infection. She finished off the therapy at home as her mom is a registered nurse and able to do IV meds at home. Following the hospital stay, she gained some good points on her pulmonary function tests and returned to college for her second semester.

Jen was the lead in adopting our new family dog, a rescue dog from Mississippi named "Westley" aka. "Crusty dog". Jen's boyfriend Pat earned his rank of Eagle Scout and helps Jen with her meds and PT.

Jen looks forward to attending this years LCS and sends her love to all the Ohio Cobra Club volunteers who are so selfless in the work for CF

Dave Smith

NOTE: Picture is of Jenny during her recent hospital stay with her sisters Nicole and Maddie keeping her company. 

Alyson and Andrea, 17-year-old twins who are living with cystic fibrosis, are committed to doing all they can to live longer and stronger lives.  They stay active exercising, playing soccer, and running 5K’s and Half-Marathons.  Just like Andrea and Alyson, there are approximately 30,000 people in the United States living with cystic fibrosis.

As a family, we realize that we cannot do what we do alone.  We rely upon a team of persons working both behind the scenes and out front to combat this disease.  The girl’s daily regiments consist of pills (more than 30 each), nutritional supplements, additional calories, 5 inhaled medications, 80 minutes on the Vest which provides vital air-way clearance, and rigorous huff-coughing – and that is all when they are healthy!  These are the daily steps that help to make their lives longer and stronger.  Their lung function continues to be maintained at near normal levels, and they continue to experience steady weight gain.  Their daily steps, the advances in medications and treatments like Orkambi, the constant vigilance from their physicians and care team, advocacy at both a state and federal level for adequate health insurance access and coverage, and the support of family and friends have been essential in adding tomorrows to Andrea and Alyson’s lives.

The Cystic Fibrosis Foundation and many partners like the London Cobra Show are relentless in its pursuit to find a cure for this dreaded and life-limiting disease.  Our family has been active with the foundation ever since the girls were diagnosed 17 years ago.  Dad continues to serve as a volunteer with the local CF chapter and Nationwide Children's Hospital’s Cystic Fibrosis Clinic and is a constant advocate in Washington D.C., as well as and at the statehouse for those living with cystic fibrosis.  Alyson and Andrea joined the advocacy efforts this past year and were successful in helping to maintain their state-level coverage, BCMH.

Many folks ask what they can do to make a difference.  As a family, we assure you that your past raffle ticket purchases have made a difference and your 2018 raffle ticket purchases will continue to make a difference.  Andrea and Alyson have been the recipients of cutting-edge medications and treatments and for that, we are eternally grateful.  We invite your continued support by making your 2018 London Cobra Show raffle ticket purchase today!  Thank you in advance!

David Hoffman – A proud and thankful father

NOTE: Raising a child with cystic fibrosis is scary because CF affects many aspects of a child’s life. Keeping a child healthy and fighting CF takes a team effort and the London Cobra Show is just a small part of that team.

The recently approved CF drugs Kalydeco and Orkambi work to treat the underlying cause of CF in a small percentage of people with CF.

Your purchases of raffle tickets for the London Cobra Show’s raffle allow our donations to the Cystic Fibrosis Foundation that are designated for ongoing research to find additional CF therapies that could help improve key symptoms of the disease by targeting the disease at its root.

THANK YOU - YOUR SUPPORT will MAKE A DIFFERENCE TO INDIVIDUALS WITH CYSTIC FIBROSIS.

NOTE: To purchase your raffle tickets, please CLICK on the RAFFLE TICKET tab at the top of the page.

Monday was my daughter Jenny's 19th birthday!

Many of you have been part of her journey and her fight against Cystic Fibrosis.

Jenny is almost done with her first semester at St. Anselm College and will be home for Christmas break. Her new medicine is working well, but unfortunately, she will have to spend a good part of her break in the hospital as her CF has taken a bit of a turn.

Jenny is a strong, independent young woman.

A father cannot be more proud of a daughter!

Happy Birthday, Jenny!!

Dad (Dave Smith)

Pic: Jenny with her adopted dog Westley a.k.a. Crusty Dog

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.