23 July 2022

The Great Road Trip completed its 6,600-mile journey today with a final stop in Castel Gandolfo, on Lake Albano south of Rome and location of the former summer residence of the Pope. A group of Italian 2CV owners accompanied the Little Red Car across the finish line after its transcontinental journey in five countries on two continents. Dr. Fabrizio Malta, president of AIMAK – the Italian patient advocacy group – hosted a Grand Finale luncheon that was well attended by AIMAK members, KD researchers, and their families. The KD-UK 2CV driving team was also there, including Roger Taylor, who drove the car from the UK to Rome, and Simon Conibear and Ian Powell who will drive the 2CV back to the UK. Remarks by KD-UK and KDA thanked Dr. Malta and pointed out that, after expenses are paid, the Great Road Trip has raised over 100,000 Euros (about the same amount in dollars) that will go directly into KD research. Additional funds for research will come from the sale of the 2CV when it returns to the UK. We also focused on the collaboration of AIMAK, KD-UK, and KDA to make the Great Road Trip a success. We are all part of the global KD family and look forward to continuing cooperation in research, information sharing, and awareness building. So, “arrivederci” Rome and to the Great Road Trip. The “Little Red Car that could” has now become the “Little Red Car that did.” Thanks to everyone, especially KD-UK Trustee Kim Slowe, the driving force behind this adventure of a lifetime. Well done, Team!

19 July 2022

Milan was the perfect stop on the Great Road Trip to raise awareness of Kennedy’s Disease. AIMAK, the Italian patient advocacy group, and research teams from the universities of Milan, Padova, and Trento teamed up to organize a spectacular series of events. The day began with a media and photo session at City Hall with a visit by Lamberto Bertole from the Municipality of Milano who is responsible for health and public safety. After a lunch of pizza and salad on a very hot afternoon, we attended an informative session at the University of Milan with several KD patients and family members. We heard presentations from researchers, neurologists, and others showcasing the many research projects in the three universities. In general, researchers under the guidance of professors Angelo Poletti (Milan), Maria Pennuto (Padova), and Manuela Basso (Trento) are focused on developing a deeper understanding of the mechanisms that cause SBMA and on seeking effective therapies for treatment. The Vice Rector of the University of Milan, Prof. Maria Abbracchio, remained with the team for the entire day and offered some insightful remarks about Kennedy’s Disease and rare diseases in general. The little red car, now driven by Roger Taylor, is headed to Rome for the final stop at an event hosted by AIMAK on Saturday.

16 July 2022

Our little red car continues to enjoy its 2-day short break in the French Alps before hitting the road for Milan tomorrow. Since leaving Los Angeles the car has now traveled well over 6,000 miles and raised over £100K. From San Diego to the Grand Canyon, Nashville, Indianapolis, Toronto, and Dorchester the car has raised awareness of Kennedy Disease everywhere it has been. Yahooooo......

14 July 2022

Happy Bastille Day (Fête nationale française) to our French colleagues! Paris is beautiful (as always) but very hot in the middle of July. The Great Road Trip team (aka Kathy and Terry but without the 2CV) arrived on Tuesday. We walked nearly 7 miles in central Paris on Wednesday, taking in the sights and checking on the status of Notre Dame after the 2019 fire that destroyed the cathedral's spire and most of the roof. Reconstruction will take until at least 2024. We also met with Pierre-François Pradat, leading SBMA researcher in France. He is the principal author of the "French National Protocol for Kennedy's Disease," a most useful guide for doctors unfamiliar with the disease. The protocol also contains helpful information on disease management. Having arrived in the UK only last Friday, 8 July, the Great Road Trip 2CV was offloaded from the ship in Southampton and serviced by Darren's 2CV Shop on Tuesday. Now driven by Roger, the car crossed the Channel overnight and arrived in Caen early Wednesday morning. Roger is headed to Chamonix in the French Alps before completing the journey to Milan, the next stop on the Great Road Trip. Italian researchers have planned a major event for next Monday in Milan including a gathering of patients, family members, and researchers to continue raising awareness of Kennedy's disease.

11 July 2022

On Sunday, 10 July, KD-UK and University College London (UCL) hosted a Patient Day at the Army Navy Club in London. This was a highlight of the Great Road Trip with more than 30 patients, carriers, and family members attending to hear presentations from eight researchers and clinicians from UCL and University of Oxford. KD-UK Trustee Kim Slowe organized the event that began with a delicious Sunday lunch. Dr. Carlo Rinaldi presented an overview of Kennedy's disease and discussed major areas of research and potential clinical trials. Other presenters talked about the preliminary findings of the genome project that may indicate a broader presence of the SBMA gene mutation than previously thought. They also discussed the 2020 survey that identified the symptoms KD patients find most bothersome, and exercises that may help relieve some KD symptoms. Research presentations focused on possible therapeutic approaches to KD. These included destroying mutant AR receptor genes (autophagy), enhancing muscle activity with a muscle activator, applying an isoform of the AR gene to counteract the mutant gene, and experimenting with CRISPR Cas-13, an RNA targeting and editing system. Slides from the presentations will be posted on the KD-UK website. Patients, carriers, and family members had the opportunity to chat with each other, researchers, and clinicians in a data-rich and very informative afternoon.

10 July 2022

The Great Road Trip resumed in the UK on Friday, 8 July, with a fundraising event at the Duchess of Cornwall Inn in Poundbury, near Dorchester in southwest England. Poundbury is a 30-year old city on land belonging to the Duke of Cornwall, Prince Charles, who supervised all phases of construction. More than 60 people turned up for the fundraiser organized by Kate Hopps, KD-UK Founder and Trustee, and was a smashing success. The next day, a beautiful Saturday, Citroen and 2CV owners came to Poundbury for a car rally to learn more about Kennedy's disease. We used a substitute 2CV for this event because the Great Road Trip 2CV just arrived in the UK on Friday and is still in the Port of Southampton. Darren Arthur will collect the car on Monday and check it over before it resumes its journey early next week through France and to Milan and Rome.

27 May 2022

The 2CV left the Port of Baltimore today on the Arc Independence, a vehicle carrier (see Photos). The ship is expected to arrive in Southampton, UK on 21 June where it will be met by the KD-UK team. The Great Road Trip will continue in early July with an event in Poundbury, an experimental new town near Dorchester built on land belonging to Prince Charles, and a KD-UK Patient Day in London. The 2CV will then travel to Paris, Milan, and Rome where the Great Road Trip will complete its epic adventure on 23 July. News updates will resume when the Great Road Trip begins the next leg of its journey.

18 May 2022

The month-long U.S. segment of the Great Road Trip ended today in Philadelphia - the birthplace of America and of KD research - with a super event at the Philadelphia College of Osteopathic Medicine (PCOM). The gathering was attended by researchers from the labs of Dr. Diane Merry (a member of KDA's Scientific Review Board) from Thomas Jefferson University and Dr. Heather Montie from PCOM. Drs. Merry and Montie talked about their backgrounds and discussed the legacy of KD research in Philadelphia starting with the discovery of the gene mutation that causes KD at the University of Pennsylvania in 1990. Dr. Kurt Fischbeck, now at NIH, was lab director when Dr. Al La Spada, now at University of California, Irvine (see post from 20 April) made the discovery. The labs of Drs. Merry and Montie are continuing to research the mechanisms that cause KD and looking to unlock the secrets that can lead to a cure. Many thanks to Mr. Dan McCunney, Associate Director of News & Media Relations at PCOM, for arranging our visit to the beautiful PCOM campus.

17 May 2022

It was a beautiful day in Washington, D.C., for some photo opportunities prior to leaving for the 150-mile drive to Philadelphia. The team visited the Marine Corps and Air Force memorials before stopping by the Tidal Basin and some photos of the Jefferson Memorial and Washington Monument. We had a brief stop by the West front of the U.S. Capitol, which unfortunately is covered with a load of scaffolding at the moment. We then tried the East front of the Capitol but the street was blocked off for a street demonstration in front of the Supreme Court! Next, we drove down Constitution Avenue to try for a photo of the White House. But that view, too, was blocked by traffic, trees, and a ton of security so we couldn't get a picture of the 2CV with the White House in the background. We then left DC for Philadelphia, arriving there about 6:00, just in time for the evening rush hour and encountering probably the most potholes of any city so far. The 2CV suffered a dented wheel, but that was not enough to keep it from its destination in the City of Brotherly Love where the U.S. segment of the Great Road Trip will culminate tomorrow with a media event at the Pennsylvania College of Osteopathic Medicine.

16 May 2022

The National Institutes of Health (NIH) in Bethesda, Maryland hosted the Great Road Trip 2CV and team today. NIH's KD/SBMA research and clinical team came out in force to see the car, meet the team, and drive the 2CV around the NIH campus. KDA associate Lew Myers was the first to take the wheel, followed by Dr. Chris Grunseich who drove around the entire campus in fine style. Dr. Abdullah Al Qahtani was next in line, followed by Angela Kokkinis, everybody's favorite clinical nurse. Angela rode as a passenger with 2CV Team Lead Darren at the wheel. The NIH lab team also posed for a group picture with the car, trying to outdo the La Spada lab at University of California, Irvine. They launched the Great Road Trip on April 19 with an iconic pose in, around, and on the car. It's a close competition, and the lab teams in Philadelphia will have to work hard to come out on top when we visit them in two days time.

15 May 2022

The Great Road Trip moved on from Carlisle, Pennsylvania to the Washington, D.C. area today for a fundraising event at the Cured/18&21 restaurant in Columbia, Maryland. Dr. Kurt Fischbeck from the National Institutes of Health was the keynote speaker, and others from the NIH KD clinical team along with several KD patients and their families attended. There was live music, delicious hors d'oeuvres, and great wine. An original watercolor celebrating the Great Road Trip was auctioned off along with a wine and cheese basket and other items. Between the ticket sales, the auction, and several donations received at the event, KDA received donations totaling almost $6,000. We are so grateful to the Wecker Hospitality Group, especially Steve and Patti Wecker and Vince Culotta, for donating the venue, food, drink, and entertainment for a very special evening. Thank you!

14 May 2022

After covering more than 4,600 miles since April 18, the Great Road Trip was featured today in the annual Import and Performance Nationals in Carlisle, Pennsylvania. This is a massive event attended by hundreds of people. Our team had the opportunity to conduct two "seminars," one on the Great Road Trip and 2CV and the second on Kennedy's Disease. Jameson Parker, KDA Vice President, drove five hours from Connecticut to take part in the event, and we were also joined by KD research scientist Dr. Heather Montie from the Pennsylvania College of Osteopathic Medicine in Philadelphia. This was an awesome opportunity for the Great Road Trip. Lots of interest in the 2CV was evident throughout the day, and the seminar on Kennedy's Disease attracted quite a few people to the main stage in front of the grandstand. This was a truly memorable experience and another important milestone for our little French car in its epic journey.

12 May 2022

The past two days have been full of excitement for the 2CV team. On Tuesday, the team took advantage of fantastic weather to drive around Toronto and, with guidance from Citroenvie publisher George Dyke, got some great pictures of this beautiful city. Along the way, George flagged down a local TV news reporter he knows for a short interview with the team. On Wednesday, the team drove to Buffalo, stopping to enjoy the gorgeous, panoramic vista at Niagara Falls. There was a slight delay entering the U.S. via the Peace Bridge when Customs and Border Patrol took some time to examine the car and its itinerary before allowing it back into the United States. In Buffalo, Citroen enthusiast Randy Z. and his colleague hosted the team for dinner and a media event at the Flying Bison Brewing Company. Two local TV stations filmed interviews with 2CV Team Lead Darren and showed them on the 11:00 nightly news. Next stop: Carlisle, PA, to participate with the Citroen Club at the Import and Performance Nationals on Friday and Saturday.

09 May 2022

The 2CV traveled 230 miles today from Detroit to Toronto. Lots of trucks and construction on the 401 and 402 -- and miles of wind turbines along the highway. "Twas a long trip, and the team made it just in time for a Thank-You dinner for the Torontonians who have helped so much to make the Great Road Trip a success, especially George Dyke and KDA volunteer Jurgen Richter. George posted information about the GRT in his Citronvie magazine earlier this year. His post attracted the attention of Citroen 2CV enthusiasts across the country who have come out for photo opportunities and a chance to see the 2CV and learn about Kennedy's Disease. Jurgen developed the GRT flyer that has generated lots of interest in the trip, helped people learn about KD, and led to many donations. Thanks, too, to former KDA president Andrew Cassar and KDA member Cameron Bell for joining the team for dinner. It was a memorable experience and a nice ending to another long day of driving. Tomorrow we're off to check out good vantage points in and around Toronto for photos to further document this epic journey in support of KD research to help find a cure.

08 May 2022

The Motor City, MoTown, otherwise known as Detroit, Michigan, was today's destination. The 2CV team drove the 300 miles through Indiana and Ohio farmland to get to Michigan on a lovely Spring day. We had an evening event at Vinsetta Garage, the oldest car service garage east of the Mississippi, now a great restaurant. KDA member Ted Palmer and family came from Lansing to join the team for dinner along with Katherine (Montie) Delmedico and husband Phil and a few others. A great evening in a unique setting! Tomorrow we're off to Toronto.

07 May 2022

Saturday was an awesome day for the 2CV team. Thanks to KDA member Jim Kissling, the car was on display at an event hosted by Indy 500 driver Graham Rahal. Lots of interest in the car and learning about Kennedy's Disease. The team then visited the Indianapolis Motor Speedway. Although unable to circle the track because of the "Indy Mini" half-marathon, the team visited the Indy Motor museum and got some great photos. In the afternoon, the 2CV participated in the weekly "cruise," a weekly gathering of vintage cars around the courthouse square in Noblesville, where they were joined by Mike and Ann L., owners of a beautiful vintage 2CV "Charleston" model. Overall, a wonderful day in Indianapolis. Off to Detroit tomorrow!

06 May 2022

Today was a travel day, just over 300 miles from Nashville to Indianapolis. We stopped in Louisville to meet Lee and Brenda B., 2CV owners who treated the team to a barbeque lunch. Lee bought the car as a surprise for their 40th anniversary because she fell in love with the 2CV when they were in France. Leaving Louisville, we were pounded by severe rain in several different stretches - flashers on, slowing to a crawl, navigating by keeping an eye on the trucks ahead of us. 'Twas a lot of drama, but the 2CV came through just fine with just a bit of a leak but not enough to deter the intrepid team lead, Darren, who drove on, arriving in Indianapolis just in time for the Friday evening rush hour!

05 May 2022

The Great Road Trip team visited the Lane Motor Museum in Nashville today. Thanks to Dale and Kathy Traxler who organizaed and hosted the event including a taco lunch. We enjoyed seeing the unique car collection at the museum, and spoke to several other visitors about Kennedy's Disease. Tomorrow, we head off to Indianapolis by way of Louisville where we will try to avoid the crowds gathering for the Kentucky Derby on Saturday.

03 May 2022

Today the 2CV made a beeline from Little Rock to Nashville, traveling 356 miles flat out at 73 mph! They celebrated with a chocolate volcano dessert, and will spend Wednesday shopping for bigger clothes! Come and see the 2CV and meet the team at the Lane Museum in Nashville on Thursday, May 5, starting at 11:00 am.

02 May 2022

The Great Road Trip team spent a delightful weekend in Dallas, where they were hosted at Garage Courtier by owner Rob Courter. The 2CV was on display at the British & European Car Show, an annual extravaganza featuring over 250 vintage cars. Today, they head off to Paris (Texas, not France yet) to continue the journey towards Little Rock, Memphis, and Nashville. Safe travels, Team!

29 April 2022

Today the 2CV team made it from Amarillo to Dallas, driving 310 miles in 6.5 hours. All that time on the highway was tough on the little car and it developed a small oil leak. So when they got to Dallas, the team pulled into Garage Courtier, home of the only Citroen mechanics in Texas, for a little repair work. With any luck, they'll be able to fix the problem tomorrow and then get some well-deserved rest before making an appearance at the big British and European Car Day in Dallas on Sunday. Keep calm and carry on, guys!

28 April 2022

The Great Road Trip team left Santa Fe today, bound for Dallas and the All British and European Car Day on Sunday, May 1. On the way, they stopped at Cadillac Ranch along Route 66 in Amarillo to check out the art work started by San Francisco hippies in the 1970s. The temperature warmed up to the 90s and the 2CV got its first wash since leaving LA!

26 April 2022

The Great Road Trip visited Santa Fe, New Mexico today where the 2CV and team were featured in an awareness and fundraising event organized by Smokey and Elaine Daniels, Santa Fe residents and longtime KDA supporters. The Daniels welcomed the team into their home and provided dinner and overnight accommodations. This is another wonderful example of KDA members helping to get The Great Road Trip off to a successful start. Thanks so much!

25 April 2022

After a short detour to visit the Grand Canyon on Sunday, the 2CV team continued on Route 66 to Winslow, Arizona where they spent a few minutes "standin' on the corner." They continued on to Holbrook where they spent the night in a Wigwam Motel. Today they travel to Santa Fe, New Mexico for a public appearance tomorrow. Stay tuned, and get out there and participate!

23 April 2022

On Friday, the 2CV team drove from Lake Havasu to Flagstaff, Arizona, a distance of 250 miles including 180 miles on legendary Route 66. KD Patient Simon Hill rode the entire trip in the 2CV from San Diego to Flagstaff, including driving the little car himself to encourage other KD patients to do the same while seeking sponsorship for the miles covered. The team experienced a significant change in temperature from 72 degrees in the morning to 32 with snow flurries in the afternoon. They also encountered a few donkeys along the way, but avoided the wildfires near Flagstaff. The team is taking a well-deserved rest over the weekend including a visit to the Grand Canyon before continuing their eastward journey!

22 April 2022

The 2CV team started their eastward journey on Thursday, covering 315 miles from San Diego to Lake Havasu City, Arizona. This leg of the trip included a stop by the police in California to check on the car's British registration, a tense moment resolved only after KD-UK Trustee Kim Slowe, in the UK, had a long phone conversation with the policeman. The team continued on across a desert and 4,500 feet of elevation change to Lake Havasu City where they will visit the original London Bridge.

20 April 2022

The Great Road Trip visited the University of California, Irvine (UCI) on Tuesday, April 19 where we met with the UCI research team studying Kennedy’s Disease and other neurological diseases. Our host was Dr. Al La Spada, the doctor who, in 1990, discovered the gene mutation that causes Kennedy's Disease. The researchers from the La Spada Lab enjoyed seeing the car, and the 2CV team enjoyed a tour of the research labs. The evening featured a fundraising dinner at Roger’s Garden Farmhouse restaurant where we sat in the original bandstand from Disneyland for a fabulous meal and great conversation. Tuesday night, the 2CV traveled to San Diego for another day of touring, photos, and a possible media event at Shoreline Park on Shelter Island.

18 April 2022

The Great Road Trip is off and running. The team arrived in Los Angeles on Easter Sunday and visited a few iconic spots in the city.KDA co-founder and President Emeritus Susanne Waite posed with the 2CV in front of Mel's Diner. Special thanks to Denise Hill for scouting out the LA itinerary and identifying the best places for photo opportunities. If you would like to participate as a driver or passenger, visit the Sign Up section of this website!

15 April 2022

The first sea leg of the Great Road Trip has been completed! The car arrived in California today after crossing the Atlantic and traversing the Panama Canal. KDA President Emeritus Susanne Waite picked up the car and took it to her home for storage until the UK team arrives in mid-April. They will then begin the North American leg of the trip. Onward and upward!

15 April 2022

The Citroen 2CV was shipped from the United Kingdom in February and arrived in California on March 10. KDA co-founder and President Emeritus Susanne Waite has graciously agreed to store the car until the beginning of the trip in Los Angeles on April 18. Thank you, Susanne!