Displaying items by tag: NYRA

SARATOGA SPRINGS — The New York Racing Association, Inc. (NYRA) announced its lineup of four premium giveaways for the 2019 meet at Saratoga Race Course. All giveaways are free with paid admission, while supplies last. Additionally, NYRA will offer an exclusive giveaway for season pass and season ticket holders who are in attendance on Opening Day, Thursday, July 11: a white cooling towel featuring the red Saratoga logo, available while supplies last. Gates open at 11 a.m. each day, including weekends, with the exception of Travers Day, Saturday, August 24.

SARATOGA PICNIC COOLER: 
Sunday, July 14
The first giveaway of the 2019 season will provide fans with an easy and convenient way to tote their food and beverage spread: a collapsible, red picnic cooler featuring the Saratoga logo emblazoned in white, presented by NYRA Bets. In addition to the Saratoga picnic cooler giveaway, the day's festivities will include the 28th annual Hat Contest, presented by Moet & Chandon and Hat Sationa! By DEI.

SARATOGA BASEBALL CAP: 
Wednesday, August 7
Guests will take home the second giveaway of the 2019 meet: the Saratoga baseball cap, presented by Saratoga Casino Hotel. This season's edition of the annual giveaway item features the Saratoga logo against the backdrop of a red, black and gray camouflage print. The giveaway corresponds with First Responders Day at Saratoga, during which all first responders will receive free Grandstand admission with proper ID. 

SARATOGA BEACH TOWEL: 
Wednesday, August 21
The season's third premium giveaway - a Saratoga beach towel, presented by Upstate Ford Dealers - will kick off the countdown to the 150th running of the Grade 1, $1.25 million Runhappy Travers. The circular beach towel is a colorful rendering of a thoroughbred and jockey charging down the main track with the iconic Saratoga grandstand in the background. 

SARATOGA ZIP-UP SWEATSHIRT: 
Sunday, September 1                 
Fans will celebrate closing weekend of the 2019 Saratoga meet with the final giveaway of the season - a Saratoga sweatshirt, presented by Lia Infiniti. The gray hooded, zip-up sweatshirt is adorned with the red Saratoga logo. 

Season pass and season ticket holders are guaranteed a Saratoga premium giveaway on the day of the giveaway so long as they are present at Saratoga Race Course and redeem the giveaway by the designated time.

Season admission passes may be purchased online at NYRA.com/Saratoga and in-person at nearly 150 Stewart's Shops locations throughout the Capital Region. A season pass provides fans with admission to all 40 days of world-class thoroughbred racing at Saratoga Race Course. The cost for a 2019 Grandstand season pass is $50. A Clubhouse season pass is $75. Season passes do not include reserved seating.

Following Opening Weekend, Thursday, July 11 through Sunday, July 14, racing at Saratoga will be conducted five days a week, Wednesdays through Sundays. Closing week will run Wednesday, August 28 through Labor Day, Monday, September 2. 

SARATOGA SPRINGS – The Saratoga racing season, which typically runs from late July until Labor Day weekend will be extended by an additional week this summer.   

The New York Racing Association has set this year’s opening day as Thursday, July 11 - eight days before its previously assumed opening date of July 19.

The extending of the summer meet by eight calendar days will not translate to additional races, however, maintaining its 40-Saratoga-racing-days status quo. Previously, races had been staged six days per week with Tuesdays being a no-race or “dark” day. The lengthier 2019 calendar season, should it be approved, will be compensated for by the addition of no-race Mondays - with the exception of Labor Day - resulting in five days of races per week. The meet will conclude on Labor Day, Monday, Sept. 2.

The ramifications for both year-round residents and summer visitors could be huge.

The earlier start in 2019 will overlap with a pair of perennially busy weekend dates by Dave Matthews Band at Saratoga Performing Arts Center on July 12-13, as well as the summer staging by the New York City Ballet at SPAC July 16-20.  Elizabeth Sobol, president & CEO of Saratoga Performing Arts Center, said having the track open a week earlier gives us the opportunity to cross-promote the New York City Ballet summer residency at SPAC.

City Finance Michele Madigan Commissioner says the summer racing season is among the largest drivers regarding sales tax for the local economy and that despite losing one racing day per week, the addition of a week could be a boost for the local economy.

"We will work with NYRA to ensure the safety of our horses and riders and to do all we can to protect the thousands of jobs in our backstretch community as we navigate this challenging time,” NYTHA President Joe Appelbaum said in a statement.  “NYTHA supports the interim solution NYRA has worked out for summer racing dates. While it presents certain complications, we all get to spend five extra days a year in Saratoga - which is always good for the soul."

 "The new schedule will bring both anticipated and unanticipated benefits to our summer racing season, and we will use the City's resources to make it even more successful than ever,” added city Mayor Meg Kelly.

The schedule change is related to the upcoming construction of a new hockey arena, which would shorten the length of the racing season at NYRA’s Belmont Park.

In December 2017, Gov. Andrew Cuomo announced that the New York Islanders hockey team and their partnership group were selected as winning bidders of a state issued Request for Proposals aimed at strengthening Belmont Park as a world-class sports and entertainment destination. The goal is to construct an arena by the start of the 2021 hockey season. It is unclear whether that would subsequently translate to an additional extended Saratoga season in 2020 and/or 2021. 

The construction timeline indicates work on the new arena at Belmont Park could begin as early as the second quarter of 2019, leading to potential disruption during morning training and afternoon racing. The Belmont Park spring/summer meet will feature a revised 48-day calendar to commence on Friday, April 26 and run through Sunday, July 7.

The new year has brought an unsettling start to 2019 for the New York Racing Association. President and CEO Chris Kay resigned his position in January. According to published reports, Kay allegedly used employees to conduct work at his Saratoga Springs home, and last week it was announced a 25-year partnership between NYRA and Saratoga Race Course food services provider Centerplate will not be renewed. The end of the contract will leave hundreds of people at the Saratoga Race Course without jobs, according to the independent news and information platform Patch.com.  It is not known whether a yet-to-be-named new vendor to manage food and beverage concessions will hire those who were previously employed at the racecourse.  

Todd Shimkus, president of the Saratoga County Chamber of Commerce, says the county’s tourism promotion agency will “pull out all the stops to bring as many people here as possible.  I think the hospitality sector likes the idea of an extra weekend and many of the folks in the horse racing industry like the idea of two (dark) days for a variety of reasons,” Shimkus said. “We’ve also heard from residents who are not necessarily thrilled with the idea of having their meet extended and their city taken over by visitors - but from an economic perspective this extra weekend helps us attract even more people who shop and dine and stay here; The hospitality sector is going to be able to grow.”   

Ariane Fuller is the owner/real estate broker at Racing City Realty – in its 17th year of serving the track rental needs for both homeowners and renters

“I do believe the extra days will be a boost for the community with more time to explore all that Saratoga Springs and the surrounding areas have to offer. Overall, the consensus seems to be that homeowners are excited at the opportunity to rent an additional week.   We will make adjustments as needed. We will take this in stride - my goal is to work hard and make this transition a smooth process for both homeowners and renters.”

A decade ago, the length of the Saratoga season was extended from 36 race days to 40. The Spa staged its first organized thoroughbred racing meet in 1863, which took place over four days in August, as Saratoga began to earn its nickname as “the August place to be.” A century after its founding, the meet was extended to 24 days, then to 30 days by the 1990s.

The 2019 spring/summer racing calendar at Saratoga will be highlighted by the Grade 1 Belmont Stakes on Saturday, June 8; the Grade 1 Whitney on Saturday, Aug. 3; and the 150th anniversary running of the Grade 1 Runhappy Travers on Saturday, Aug. 24.

Photos provided.

SARATOGA SPRINGS - The New York Racing Association, Inc. (NYRA) today announced that all reserved seats in the Clubhouse, Grandstand and at The Stretch are sold out for Travers Week, August 22 through 27, including on Travers Day, Saturday, August 25 for the 149th running of the Grade 1, $1.25 million Travers at Saratoga Race Course.

General admission tickets for Travers Day are currently available. Fans who purchase Travers Day grandstand and clubhouse admission in advance will save $5. Advance grandstand admission tickets are $10. Pending availability, grandstand admission on Travers Day will be $15. A limited number of clubhouse admission tickets are available for $25. Clubhouse upgrades will not be available on Travers Day. Paid attendance for the 2018 Travers will be capped at 50,000, as has become standard procedure, to provide the best experience possible for guests. Limited numbers of reserved seats in the Clubhouse and Grandstand, as well as premium reserved seats in The Stretch, are currently available for other big race days, including the Grade 1 Diana on Saturday, July 21; the Grade 1 Coaching Club American Oaks on Sunday, July 22; the Jim Dandy on Saturday, July 28; the Grade 1 Whitney on Saturday, August 4; the Grade 1 Fourstardave on Saturday, August 11; the Grade 1 Alabama on Saturday, August 18; and the Grade 1 Woodward on Saturday, September 1. Single-day reserved seats may be purchased at www. ticketmaster.com.

“Reserved seats for the 2018 meet are selling extremely quickly, especially for our big Saturday race cards. Fans who are interested in securing a seat for any of the major stakes this season should do so without delay,” said NYRA Senior Vice President and Chief Experience Officer Lynn LaRocca.

“With limited inventory and increased demand, we strongly encourage fans to purchase their seats in advance,” LaRocca continued.

Fans who are interested in securing admission without reserved seating for all major stakes races this season, including the Travers, can do so with the purchase of a Saratoga season pass, which provides admission to 40 days of world-class thoroughbred racing. The cost for a 2018 Grandstand season pass is $40; a Clubhouse season pass is $65. Season passes are valid for one admission. Season admission passes are currently available for purchase online at NYRA. com/Saratoga or in-person at more than 150 Stewart’s Shops locations throughout the greater Capital Region.

The 2018 meet at historic Saratoga Race Course will be highlighted by the Grade 1, $1.2 million Whitney and the Grade 1, $1.25 million Travers, the centerpieces of two of the biggest days in North American racing. The 40-day meet, which includes 69 stakes worth $18.8 million in purses, will run from Friday, July 20, through Labor Day, Monday, September 3. After opening weekend, racing will be conducted six days a week, Wednesdays through Mondays. For more information about Saratoga Race Course, visit www. NYRA.com/Saratoga.

[Photo provided]

SARATOGA SPRINGS — Bird Town, a mare owned by Marylou Whitney and the recordholder for the fastest Kentucky Oaks of all time, delivered the seventh foal of the National Museum of Racing and Hall of Fame’s Foal Patrol project on May 3 at 2:10 a.m. at Gainesway Farm in Kentucky. The foal, a filly by Empire Maker, was a few days past her expected due date of April 26. Bird Town, a multiple Grade 1 winner during her racing career, and the foal are both in excellent health. The live feed of Bird Town and her foal can be viewed at www.foalpatrol.com. “It’s great to welcome Bird Town’s foal,” said Cathy Marino, director of the National Museum of Racing and Hall of Fame. “We want to thank Marylou Whitney and her husband, John Hendrickson, for allowing all of us fans the opportunity to get to know Bird Town as part of the Foal Patrol project. We look forward to seeing this filly develop and hopefully become a great racehorse like her mother,” Marino said. The final Foal Patrol mare scheduled to deliver is Arravale at Chanteclair Farm in Kentucky. Owned by Merriebelle Stable and in foal to Triple Crown winner American Pharoah, Arravale is expected to give birth around May 24. About Foal Patrol: The National Museum of Racing and Hall of Fame launched Foal Patrol on Dec. 19, 2017 at www. foalpatrol.com. The project is a one-of-a-kind collection of live web cameras where people can view real-time streams of several in-foal mares during their pregnancy through the actual foaling and beyond. The website is optimized for viewing across all media platforms, including tablets and smart phones. 

SARATOGA SPRINGS - The New York Racing Association, Inc. (NYRA) this week received approval from the New York State Franchise Oversight Board to proceed with construction of a permanent building at the site of the current At the Rail tent at Saratoga Race Course.

The project will replace the seasonal tent and trailers located immediately adjacent to the end of the Clubhouse with a 36,000-square foot, three-story, climate-controlled building featuring differentiated hospitality options and modern amenities. In addition to the three floors of usable space for guests, a basement level will provide space for a fully appointed kitchen to service the building.

NYRA currently plans to break ground on the project at the conclusion of the 2018 summer season and anticipates the new building will welcome guests on opening day of the 2019 meet.

“The new building will address the modern-day needs of Saratoga Race Course while honoring its history,” said NYRA CEO and President Chris Kay, in a statement. “We have taken great care to ensure that the building is historically consistent with the fabled architecture of our grandstand and clubhouse. We look forward to beginning the next steps of this much-anticipated project."

SOSH Architects will continue to oversee design, bid and construction administration services for the building. Matt Hurff, partner at Saratoga Springs-based Frost Hurff Architects, will continue to serve as project consultant to ensure all historic preservation standards are met.

The project has received the endorsement of the Saratoga Springs Preservation Foundation, which specifically noted the importance of the new building to the future of Saratoga Race Course.

In recent years, NYRA has placed significant resources behind historic preservation efforts at Saratoga Race Course. In 2015, NYRA began to restore the copper roofing that historically bordered the slate-covered roof on buildings throughout the property. This is visible in a number of locations, including the archway over the Clubhouse escalator, which was installed in 2016; the paddock mutuel building roof, to which copper accents were added in 2017; and the Clubhouse from the Easy Goer to the Club Terrace, which will feature the addition of copper along the roofline for the 2018 season.

In 2017, NYRA unveiled several upgrades to the historic paddock mutuel building, including a new slate roof and rafters. The improvements are intended to ensure the continued preservation of the historically-significant building, which was constructed in 1902 and originally used as a saddling shed during inclement weather.

The Saratoga Race Course Local Advisory Board also expressed support for the new building.

The new building is the latest in a series of capital improvements at Saratoga Race Course. Since 2013, NYRA has invested more than $30 million at Saratoga in efforts to enhance the guest experience and provide amenities that are consistent with those available at first-class stadiums and arenas.  

These efforts are most recently demonstrated through the creation of The Stretch, Saratoga's newest hospitality area located in the grandstand at the Top of the Stretch, which will debut on opening day of the 2018 meet.

The Stretch will feature modern and upscale amenities in a casual environment with breathtaking views of thoroughbreds rounding the final turn as they enter the dramatic stretch drive. Highlights of the area include three types of boxes available in multiple configurations, a dining tier, reserved bar seats, and approximately 200 premium reserved seats.

Additionally, guests now enjoy more than 1,000 new high-definition televisions throughout Saratoga Race Course; 950 picnic tables available for free on a first-come, first-serve basis in the backyard; new high-definition video boards in the backyard and infield; enhanced Wi-Fi and sound systems; a renovated and redesigned Saratoga Family Zone; and new attractions and hospitality areas such as the Saratoga Walk of Fame, Fourstardave Sports Bar and Easy Goer.

The 40-day meet, which includes 69 stakes worth $18.8 million in purses, will run from Friday, July 20, through Labor Day, Monday, Sept.3.

[Photos provided]

SARATOGA SPRINGS — The New York Racing Association, Inc. (NYRA) announced a major capital improvement project at Saratoga Race Course designed to create an enhanced hospitality area for racing fans and revitalize the section of the grandstand near the Top of the Stretch. The Stretch, located in the grandstand at the Top of the Stretch, will debut on opening day of the 2018 Saratoga summer meet and marks the first significant enhancement to the structure since the mid-1960s. Guests will have an opportunity to make their move to The Stretch, an all-new private hospitality area featuring modern and upscale amenities in a casual environment with breathtaking views of thoroughbreds rounding the final turn as they enter the dramatic stretch run. Highlights of the area include three types of boxes available in multiple configurations, a high-end raised circular bar, touchscreen tablets, and new premium reserved seating. Additionally, The Stretch will offer guests exclusive access to a fullservice kitchen and concessions, high-definition televisions and video screens, special events, table service, and private restrooms. Guests will also enjoy a relaxed dress code at The Stretch. Reserved seating options for The Stretch are now available for paid reservation on a seasonal basis. Inventory is limited and expected to sell quickly for what is anticipated to be one of the most popular hospitality options at Saratoga Race Course this summer.

Reservations can be made exclusively through the NYRA Box Office by phone at (844) NYRA-TIX, via email at This email address is being protected from spambots. You need JavaScript enabled to view it. or at www.nyra.com/saratoga. The Stretch is the latest in a series of capital improvements at Saratoga Race Course. Since 2013, NYRA has invested more than $30 million at the historic venue in efforts continuously designed to enhance the guest experience and provide amenities that are consistent with those available at first-class stadiums and arenas.  

Guests now enjoy more than 1,000 new high-definition televisions throughout the property; 950 picnic tables available for free on a firstcome, first-serve basis in the backyard; new high-definition video boards; enhanced Wi-Fi and sound systems; a renovated and redesigned Saratoga Family Zone; and the renovation of the upper and lower Carousel, amongst other items.

“Over the past five years, we have placed a tremendous emphasis on enhancing the guest experience at this much beloved sporting venue. We first made a commitment to expand the number of free picnic tables in the backyard with improved sound, video and Wi-Fi, and then to make a day at Saratoga more affordable than ever for fans with our season pass and Season Perks programs,” said New York Racing Association CEO and President Chris Kay.

“We have also dedicated significant resources to showcase the history of this grand place, from the Whitney Viewing Stand to the Saratoga Walk of Fame, to the restoration of the Paddock Mutuel Building. Now, for the first time in many decades, we are creating new boxes for people of all ages to enjoy a day at historic Saratoga Race Course,” he continued.

In 2018, the grandstand will also be outfitted with a new copper roof which will offer protection from the elements and improve the experience for guests. “The new copper roof will protect the grandstand from weather damage and provide an aesthetic experience in keeping with the building’s historic character,” said Matt Hurff, partner at the Saratoga Springsbased Frost Hurff Architects who serves as a consultant to NYRA.

“The Stretch will offer guests the best of both worlds - modern, comfortable and technologicallyadvanced amenities, seamlessly integrated into the charm of America’s oldest continuously operating race course,” Hurff explained.

The Stretch will offer a total of 32 new modern boxes, each offering unique configurations accommodating parties ranging from four to 12 guests, in comparison to traditional clubhouse boxes which each seat five guests. The options include tiered boxes, which each feature a halfmoon table and total of eight seats split evenly on two levels. The lounge boxes offer comfortable couch-style seating and accommodate four to twelve guests. Lastly, the flex boxes contain three tables which each seat up to four people, and can be configured to host four, eight, or 12 guests, depending on availability and the size of the party. Guests will also enjoy an upscale circular bar, featuring a full range of beverage options, which is raised to offer uninterrupted views of the unique sightline from the Top of the Stretch. The bar will be bordered by a drink rail facing the main track with a total of 20 raised seats. Additionally, a two-tiered dining area alongside the bar will feature four, six and eight-person tables. The front section of The Stretch will contain approximately 200 premium reserved seats, which are each flanked by a table. The boxes, reserved bar seats, and dining tables will feature touchscreen tablets offering access to livestreaming, mobile wagering via NYRA Bets, and mobile food and beverage ordering. All hospitality at The Stretch will first be available to the general public on a seasonal basis. Remaining inventory will be available for partial ticket plans beginning in April (based on availability).

The 2018 meet at historic Saratoga Race Course will again be highlighted by the Grade 1, $1.2 million Whitney and the Grade 1, $1.25 million Travers, the centerpieces of two of the biggest days in North American racing. The 40-day meet, which includes 69 stakes worth $18.8 million in purses, will run from Friday, July 20, through Labor Day, Monday, September 3. After opening weekend, racing will be conducted six days a week, Wednesdays through Mondays. For more information about Saratoga Race Course, visit www. NYRA.com/Saratoga

[Graphic provided]

SARATOGA SPRINGS – The New York Racing Association (NYRA) has announced their 2018 racing schedule, which will be 229 days of live thoroughbred racing at Aqueduct Racetrack, Belmont Park, and Saratoga Race Course.

Saratoga Race Course will have a 40-day summer meet. The meet will feature the 91^st running of the Grade 1 Whitney and the 149^th edition of the Grade 1 Travers. The Saratoga season begins on Friday, July 20 and will have its last day on Labor Day, Monday, Sept. 3. Races will take place six days a week, with Tuesday being the dark day. The race course will offer plenty of other non-race activities throughout the week. Some family friendly, some brewery and winery tastings, there will be something for everyone to enjoy.

The Belmont Stakes Racing Festival takes place on Thursday, June 7, featuring the 150^th Grade 1, $1.5 million Belmont Stakes on Saturday, June 9. After the Saratoga season, racing returns to Belmont for a 36-day Fall Championship meet that begins on Friday, Sept. 7 and concludes Sunday, Oct. 28.

Racing at Aqueduct continues through April 22, 2018 and is held four days a week during January and February and three days a week in March.

NYRA has announced that the popular, promotional 2018 Racing Calendar will be offered through a special three-day sale Dec. 30, 2017 through Jan. 1, 2018 at Aqueduct Racetrack.

The full 2018 racing schedule can be found at www.nyra.com.

SARATOGA SPRINGS – The New York Racing Association, Inc. will continue its tradition of giveaways with four giveaway days scheduled for the summer 2017 meet at Saratoga Race Course. All giveaways are free with paid admission, while supplies last. The 2017 Saratoga Race Course premium giveaway schedule is as follows:

SARATOGA BASEBALL CAP: Sunday, July 23
The first giveaway of the 2017 season will pay tribute to the theme of opening weekend - Hats! Racing fans gather to receive a red and white Saratoga baseball cap, presented by Saratoga Casino Hotel. In addition to the Saratoga hat giveaway, the day's festivities will include the 26th annual Hat Contest, presented by Hat Sationa! By DEI.

SARATOGA SHORT-SLEEVE T-SHIRT: Monday, August 7
Racing fans will take home the second giveaway of the 2017 meet, a gray short-sleeve t-shirt featuring a red Saratoga Race Course logo. The giveaway corresponds with the weekly Berkshire Bank Family Mondays series, which features free children's activities and entertainment at the Berkshire Bank Saratoga Pavilion.

SARATOGA COOLER BAG: Monday, August 21
The season's penultimate premium giveaway - a red and black Saratoga cooler bag - will kick off the countdown to the $1.25 million Travers, which will be run for the 148th time on Saturday, August 26.

SARATOGA CLOCK: Sunday, September 3
Fans will celebrate closing weekend of the 2017 Saratoga meet with the final giveaway of the 2017 season - a Saratoga wall clock, presented by Foxwoods Resort Casino. The clock features an image of thoroughbreds racing down the stretch against the iconic Saratoga grandstand and clubhouse roofline.

Guests will be able to redeem up to three vouchers at Saratoga Race Course's giveaway redemption areas, including the one they receive with paid admission and the two additional vouchers they are able to purchase at the multiple admissions line beneath the grandstand.

SARATOGA SPRINGS – Galloping up and down the emptied corn filed behind Pitney Meadows Community Farm, “Claude’s Alley Cat” begins its preparation for the 2017 racing scene in earnest with some gentle exercises.  Before long, the two-year-old stallion will move onto the Oklahoma Training Track, across the street from the Saratoga Race Course, to begin more intense training. 

For trainer Melvin Winney, Claude’s Alley Cat, named in memory of his late father, looks to make his return to the horse racing business a successful one.  Running his first winning horse back in 1996 with “David Parson,” Winney went on to run eight winning horses during his career, including “Back Door Deal” and “Ms. Will a Way.”  Now, after five years away from the business, he sees the potential for victory in his latest horse.

“He’s been doing everything right from day one,” Winney said.  “He broke easily, quietly.”

Winney’s new horse was sired by celebrated stallion “Desert Party,” which currently resides at the Irish Hill Century Farm in Stillwater and was previously owned by Sheik Mohammed bin Rashid al-Maktoum of Dubai. 

“Most two-year-olds will go out with other two-year-olds to keep each other company,” Winney said about his new horse.  “This guy, he doesn’t need any company, he’s very attentive, he’s focused.  He’s like an older horse for a baby.  He’s just a baby.” 

All photos by Photoandgraphic.com.

SARATOGA SPRINGS – The last day of February is Rare Disease Day, a worldwide campaign that raises awareness about rare diseases and how they impact patients’ lives. According to the National Institutes of Health (NIH), a disease is considered rare in the United States if it has a prevalence of fewer than 200,000 affected individuals, and currently, there are 7,000 rare diseases that have been identified. On Monday, February 29, fittingly the rarest day on the calendar, a rare disease movie event and fundraiser took place at Bowtie Cinemas in Saratoga, which brought together community members, patients and their families for an inspiring night of awareness and advocacy. 

The sold-out movie night featured five local families affected by rare diseases, and showed films about the families’ experiences. 100 percent of ticket sales and donations benefitted the National Organization for Rare Diseases’ (NORD) RareCare Undiagnosed Program, which helps patients with mysterious, undiagnosed illnesses pay for diagnostic testing. 

The DeFabio family, who lives in Ballston Spa, was one of the families involved in the movie night and shared with the audience a documentary about their seven-year-old son Lucas DeFabio, who suffers from Menkes Disease. Daniel DeFabio, Lucas’s father, created the film, titled, “Menkes Disease: Finding Help and Hope.” 

“One of the things, when facing a rare disease, is that awareness can lead to more research and even a cure, so you want to shout that out all the time. It can never be said enough,” said Daniel DeFabio. “Rare Disease Day is promoted all around the world, and not only helps the cause, but it gives [families] more of a push, too. It validates our efforts.”

Lucas was diagnosed with Menkes Disease when he was one-year-old. Menkes Disease is a recessive disorder that affects levels of copper in the body, causing the brain, muscles and hair to not develop properly. If treatment is given within the first ten days of life, the prognosis for Menkes is good, but early treatment is difficult, as rare diseases such as Menkes are hard to diagnose. Lucas may not be able to eat, talk or walk on his own, but he brings pure joy to his family with his sunny personality and positive outlook.

“He’s just a happy guy right now,” said DeFabio. “Lucas is smiling and laughing all the time. It helps me to focus on the positive when he is so positive. He’s got a wicked sense of humor that keeps us in check. If we’re overexerting ourselves, he’ll crack up, and you just look at him laughing. Despite his limited abilities, he changes the rest of us. He changes our attitudes.”

DeFabio became involved with the movie night after going to a rare disease conference in Huntington Beach, California. Coincidently, that was where he met Dan Bobear, the president and founder of The Patient Experience Project (PEP) in Saratoga Springs. PEP, which hosted the rare disease movie night, is a communications firm that works directly with patients to make sure they have a prominent voice in the healthcare, pharmaceutical, and biotech industries. 

“We did [the movie night] because a lot of our work is with rare disease patients and their families, and we wanted to give back through a community-based event,” said Bobear. “It also filled up our tank emotionally at PEP. Our staff cares about people, and spending time with the people we do this for make us feel rejuvenated.” 

Bobear explained how raising awareness for rare diseases is vital to improving medical care for patients, for a variety of reasons. 

“If you look at healthcare, a lot of these conditions are ones you never see and often, you don’t know it when you do see it. Doctors work by routines and patterns, and if they don’t see these people, they fall between the cracks. Getting a care team is really hard, and misdiagnoses are common.”

Bobear also noted how since the market for drugs that help rare disease patients is so small, it’s difficult to justify the expense of bringing these drugs to market. Furthermore, when medications are available, they can be incredibly expensive. The more awareness there is of rare diseases, however, the more scientific research can go into helping these patients with new therapies and treatment. 

“1 in 10 Americans have a rare disease, which means that rare isn’t so rare when you look at the big picture,” Bobear said. 

As for DeFabio and his son, they are taking life day-by-day, and making each moment count. 

“You have to reset your expectations,” said DeFabio. “Longer term plans aren’t as important. Getting the chance to play with Lucas today and hug him today is the greatest thing, so who knows what tomorrow will be.” 

For more information about Rare Disease Day and rare diseases in general, visit the National Organization for Rare Diseases’ website at rarediseases.org. For more information about The Patient Experience Project, visit the-pep.com.