A nearly decade-old 5K race through Fairlington supporting a local girl with a rare disease is canceled, possibly indefinitely.
Since 2014, hundreds of Arlingtonians and visitors have participated in the Fairlington 5K, which raises money to fund research for a cure for leukoencephalopathy, or LBSL. The disorder affects the brain and spinal cord of Wakefield High School student Ellie McGinn.
Her P.E. teacher at Abingdon Elementary School initiated the first race in 2014. Since then, her family established the nonprofit, A Cure for Ellie, now Cure LBSL, which supports treatment research and raises awareness about the disease, while the race has attracted those affected by it from as far away as New Zealand.
“It’s been more than I ever could’ve dreamed for,” Ellie’s mother, Beth McGinn, tells ARLnow. “It’s a great community event and brought out the best in everyone here.”
This year would have been the eighth year for the race, but it was canceled due to stepped-up security for local races.
“For the safety and security of participants, spectators and special event staff, ACPD has a longstanding practice of clearing race courses of parked vehicles,” ACPD spokeswoman Ashley Savage said.
Over the last year, organizers of a few regularly occurring races that “did not have clear courses” were notified that by 2023, ACPD would no longer allow these events to occur if vehicles were parked along the race route.
The policy is intended to avoid drivers accidentally or purposefully striking participants. During last year’s race, police had to escort five individuals who inadvertently drove on the race course, despite public messaging and signage, Savage said.
This policy has been around for nearly a decade, according to Kathy Dalby, the CEO of local running store Pacers Running, which has handled race-day logistics for the Fairlington 5K as well as other races around the county.
“This isn’t a new policy, just probably not enforced across the board,” Dalby said. “We have been paying for car removal and meter charges since probably a year after the Boston Bombings, give or take.”
While ACPD offered to work with Beth McGinn to find a solution, she says she just does not see a way forward right now that keeps the race in Fairlington. Too many people use street parking, and relocating the race may result in fewer participants.
“What made our [race] so successful was also its downfall,” she said. “Thanks to the volume and density of Fairlington, we were able to turn out a lot of people. The civic association, the schools and the farmer’s market would promote it. There’s not that buy-in from everybody if I move it to a park.”
She says she understands the perspective of the police department. In addition to the incidents on the Fairlington 5K course last year, there have been a number of incidents in the last three years in which drivers have intentionally driven into crowds at community fundraisers, protests and foot races.
“It’s coming from a good place,” the mother said. “I wouldn’t want anyone to get hurt during my race, either… Right now, that’s the world we’re in.”
Although the race is canceled, Beth McGinn says people are still donating to the cause. The race has raised some $130,000 for research, per the race website, while the A Cure For Ellie cause has raised some $2 million, per the Cure LBSL website.
Right now, there are two drugs in clinical development. Beth McGinn says she hopes these could stop the disease’s progression in Ellie’s body and even help her daughter recover some mobility.
The disease has progressed to the point that Ellie uses a wheelchair at school and for long distances. Still, her mother makes sure to count her blessings.
“She’s a happy camper,” Beth said. “That’s a blessing.”
Bishop O’Connell High School students will be dancing for 12 hours straight to raise money for the research and treatment of cystic fibrosis.
The nearly 50-year-old tradition, dubbed the “Superdance,” will take place on Saturday, March 11 from noon to midnight. Each year, over 95% of the student body attends the event, which has live bands, DJs and games.
“This is a beloved school tradition created in the hopes of finding a cure for cystic fibrosis and in remembrance of several members of the O’Donnell family who died from the disease,” said Lizzie Whelan, the publicity chair for the Superdance.
Cystic fibrosis is an inherited disease that causes severe damage to the lungs, digestive system and other organs in the body and leads to an early death. A therapeutic drug approved in 2019 can help patients avoid lung failure and live longer.
But no such therapy existed in 1976, when the first 12-hour dance-a-thon was organized by Maura O’Donnell, then a senior at Bishop O’Connell. She put it together in hopes of raising enough money to find a cure after her sister Brenda died of the disease in 1975.
Maura, who also had cystic fibrosis, attended the first Superdance and graduated high school, but died from the disease while in nursing school.
She is remembered as “a vibrant young girl, who left an impact on every person that had the pleasure of meeting her,” Whelan said.
“Maura created a monumental impact on the student body that has lasted forty years and will continue to influence O’Connell students in the future,” Whelan said. “The entire Bishop O’Connell is dedicated to supporting this cause and continuing the fight that Maura so bravely started.”
Since its inception, Superdance has raised nearly $4.9 million to help find a cure for cystic fibrosis. This year, Whelan says the students aim to raise over $143,000 and pass the $5 million mark. Last year, the Superdance raised $136,000, making Bishop O’Connell is the largest high school contributor to the Cystic Fibrosis Foundation.
An assembly previewing the event and educating students about cystic fibrosis will be held this Friday, Feb. 10. It will feature speeches from the student council, presentations from student committees, guest speakers, skits and games. At the end of the assembly, this year’s theme for Superdance will be revealed.
Mystery Disease Still Killing Songbirds — “Jennifer Toussaint, chief of animal control in Arlington, Virginia, can’t forget the four baby blue jays. In late May, worried residents had delivered the fledglings to her clinic just outside of Washington, D.C., within just a few hours. Each was plump, indicating ‘their parents had done a great job caring for them,’ Toussaint says. But the birds were lethargic, unable to keep their balance, and blinded by crusty, oozing patches that had grown over their eyes…. Since May, when the illness was first recognized in and around Washington, D.C., researchers have documented hundreds of cases in at least a dozen species of birds in nine eastern and midwestern states. ” [Science Magazine, InsideNova, Fox News]
Plaque to Honor Breast Health Fund’s Namesake — “The Arlington Free Clinic (AFC) on July 7 held a plaque unveiling to celebrate the life of Sharon McGowan, an Arlington mother of seven who died at age 45 after battling breast cancer, and to mark the transfer of a fund in her name supporting breast health… The fund supports mammograms and biopsies for uninsured patients (including those AFC serves) fighting breast cancer in Northern Virginia.” [Sun Gazette]
Pentagon City Bus Stop Relocations — “Starting on Sunday, July 11, bus stops A, B and C along S. Hayes Street at the Pentagon City Metro station will be closed while in road concrete pads are installed at the bus bays. Buses that serve the closed stops will be temporarily relocated to bus stops E, T1 and T2 (see map below). The bus stop relocations will mainly impact Metrobus and Metroway service. The bus stop relocations will not impact ART bus service.” [Arlington Transit]
Prosecutor Pushes Back on ‘Myths’ — From Office of the Commonwealth’s Attorney for Arlington and Falls Church: “Myth: Restorative justice is a ‘get out of jail free card.’ Reality: Restorative justice is not synonymous with diversion.” [Twitter]
Event for New Chamber Music Quartet — “The newly formed 9th Street Chamber Music LLC will host a launch party on Friday, July 16 at 5 p.m. on the lawn at St. George’s Episcopal Church, 915 North Oakland St. The event will include music, food and drink for purchase, a raffle and more.” [Sun Gazette]
Arlington’s Ellie McGinn and her family recently raised nearly half a million dollars to fund research into Ellie’s rare degenerative brain and spinal cord disease.
Ellie, 12, has lived with LBSL (leukoencephalopathy with brain stem and spinal cord involvement and lactate elevation) for the last 10 years. It affects fewer than 100 people worldwide and currently has no cure. Her family has been actively fundraising for a cure since 2013.
This year’s all-virtual efforts in honor of Rare Disease Day on Feb. 28 drew a total of $400,000 in donations from around the world. Last Wednesday, the McGinn family awarded the money to the Moser Center at the Kennedy Krieger Institute in Baltimore, which is currently developing and testing new drug therapies that could lead to a cure for LBSL.
“We know they want to find answers as badly as we do,” said Ellie’s mother, Beth, about the team at the Moser Center. “We are just so incredibly grateful to have this brilliant team of researchers working toward a cure for Ellie and others like her.”
Her parents, Beth and Mike, have raised nearly $2 million for LBSL research through their family foundation, A Cure for Ellie.
The McGinn family took its annual 5K through Fairlington online this year, and leaned into other online fundraising opportunities, including a Giving Tuesday campaign and social media outreach. Ellie and her sister Vivian even ran a Facebook live fundraiser in which they poked fun of their parents — throwing eggs at them or forcing them to eat hot peppers — when certain fundraising goals were reached.
“It was great fun and the audience stayed engaged,” Beth said.
But the family yearns for a return to in-person activities and is awaiting news on Ellie’s disease.
“We miss parties, and we miss the annual Fairlington 5K and Silent Auction,” her parents said in a Facebook post. “We miss all of you.”
Sometime this month, the family will receive a formal update on the ongoing research, the post said.
“We haven’t had one since last fall when the team was able to go back into the lab and safely resume work,” the parents wrote. “We are told there is good news and bad news. Not sure what that will mean for Ellie and the other families like us but we know that even in failure the scientists are learning.”
Since her diagnosis, Ellie launched a social media campaign to rename the illness “The Awesome Disease.” She and her family were awarded the National Organization for Rare Disorders’ “Rare Impact Award” and appeared on “The Today Show.”
The A Cure for Ellie Foundation will continue to fundraise and spread awareness for the “Awesome Disease” to help find a cure. Upcoming events, more information on Ellie and LBSL, and how to donate can found on the foundation’s website.
Photos via Vimeo
Rosslyn Dog Park Now Open — “Thanks to the support of the Rosslyn Business Improvement District and R-DOGS, there’s a new interim dog park on the western side of Gateway Park. Now that’s something to bark about!” [Arlington County, Instagram]
Arlingtonian Confirmed as U.N. Ambassador — “The Senate voted 78-20 on Tuesday to confirm Linda Thomas-Greenfield as U.S. ambassador to the United Nations.” The long-time Arlington resident “has promised to restore the U.S. role as a defender of human rights and will look to repair multilateral relationships that fractured under former President Trump.” [Axios]
Crashes on I-395 Yesterday Morning — From the Arlington County Fire Department: “The units from Station 9C ran a three vehicle accident early this morning on 395NB. Upon arrival, they discovered a trapped patient who was quickly extricated. Two patients were treated and transported with non-life threatening injuries.” [Twitter, WUSA 9]
YHS Students to Continue Athletics in College — “A dozen Yorktown High School athletes participated in recent college signing ceremonies to continue their playing careers at the next level.” [InsideNova]
Local Woman Sickened By New Puppy — “An Arlington mother and daughter are warning those interested in purchasing a new pet about a disease called campylobacter. Audrey Glitt was thrilled when her mother, Katrina Metzler, brought home a new puppy named Fernweh as a surprise — but shortly after the dog’s arrival, the excitement quickly faded to worry. ‘I think it was about, a week later after we had gotten her, I started getting really sick and I couldn’t get out of bed,’ said Glitt.” [WDVM]
(Updated at 12:20 p.m.) As Arlington officials take measures to slow the spread of the coronavirus outbreak, the number of people testing positive for COVID-19 in the county has again gone up.
As of noon today, the Virginia Dept. of Health reported 13 coronavirus cases in Arlington. That’s the highest count of any individual jurisdiction in the state — up from 9 cases in Arlington yesterday.
By contrast, there are currently 12 reported cases in Fairfax County, with about 5 times the population of Arlington, and still only 2 positive coronavirus tests in Alexandria.
Statewide, 1,028 people have been tested and 67 people have tested positive across the Commonwealth, up from only 489 people tested and 51 cases yesterday.
Given the relative lack of testing so far, and the continued spread of a highly-infectious disease that doesn’t present symptoms for a few days, it’s a near-certainty that cases will continue rising, perhaps dramatically. And it’s not clear to what extent more proactive testing or reporting may be playing a role in Arlington’s higher numbers relative to other jurisdictions.
To slow the spread, officials from the national to the local level have been urging people to frequently wash hands, avoid touching one’s face, and to practice social distancing — maintaining six feet of separation from others when out in public. Last night Arlington County’s top officials released a statement urging restaurants to close their dining rooms, even though Virginia has not followed the lead of other states in mandating such closures yet.
Many restaurants across Arlington have announced temporary closures or takeout– and delivery-only options over the past 24 hours. A few others, however, remain open to dine-in customers.
(Updated at 4:05 p.m.) Amid the ongoing coronavirus outbreak, much of the usually bustling places around Arlington seemed like a ghost town this morning.
The Clarendon Metro station and Reagan National Airport were eerily empty at times. Only a handful of people could be wandering Ballston Quarter mall and eating at local restaurants. Other than grocery stores, drug stores and Costco, many stores were quiet.
At Bearded Goat barber shop in Ballston, barbers were serving their last clients before closing for at least the next two weeks.
On I-395 and other heavily-traveled highways, traffic volumes that could be mistaken for Christmas morning could be seen.
Ultimately, it’s a good sign: only social distancing and staying at home will slow the spread of the virus. But it may be a new normal that stretches into the summer.
Jay Westcott contributed to this report
Update at 3/23/20 — The number of meal distribution locations has been expanded to five.
Earlier: Arlington Public Schools will be offering free breakfasts and lunches to those who need them during the month-long school closure.
APS announced Friday evening that meals will be provided for pickup from Kenmore Middle School and Drew Elementary, starting Monday, from 11 a.m.-1 p.m. The meals will be available to any child ages 2-18, but children must be present to receive the meals.
The program will help fill a need in the community, particularly among those eligible for free or reduced price lunches at school, as families hunker down during the worsening coronavirus outbreak. For some families, the outbreak will mean a loss of hourly wages for an extended period of time.
More from APS:
Beginning Mon, March 16, APS will provide free grab-and-go breakfasts and lunches at two school sites – Kenmore Middle School (200 S. Carlin Springs Road) and Dr. Charles R. Drew Elementary School (3500 S. 23rd Street). Meals will be set up on a table outside the building for distribution from 11 a.m.to 1 p.m. Monday-Friday.
APS will provide one (1) lunch for that day and one (1) breakfast to take home for the following day. These meals will be free to any child aged 2 to 18. Children must be present to receive the meals; no meals will be given to parents without their child or children present. We will continue to monitor the situation on a daily basis and make adjustments as needed.
Meals will be provided to all children without charge and are the same for all children regardless of race, color, national origin, sex, age or disability, and there will be no discrimination in the course of the meal service.
Meals will be provided Monday-Friday beginning 3/16/2020, at the sites and times as follows:
Kenmore Middle School
200 S. Carlin Springs Road
11 a.m.-1 p.m.
Dr. Charles R. Drew Elementary School
3500 S. 23rd Street
11 a.m.-1 p.m.
Also on Friday, APS announced that it would be offering instructional activities for students during the school closure, via a combination of hard copy materials and electronic means.
The school system provided the following guidance to families:
We have prepared to deliver instruction to our students during this period. Please note the last day of the third-quarter grading period has been altered due to the school closure. All teachers will now complete their grading of third-quarter content by March 20, and it will only include student work submitted by that date. Report cards will still be sent home to families at the end of April as previously scheduled.
- For Early Childhood and Elementary students (PreK-Grade 5), instructional materials have been prepared and should have been distributed by individual schools either in hard copy or electronically. If you have questions about how to access the instructional materials for your child, please contact your student’s teacher.
- Secondary students (Grades 6-12) will be able to access assignments using Canvas. Teachers will spend the week of March 16 fulfilling their normal duties and working to transition course content, assignments and activities online.
We want to acknowledge that we can never replace the work our teachers do with students in our classrooms; no one expects learning to be as effective as what teachers accomplish directly with students. These activities are meant to help our students maintain their existing skills and knowledge, extend their learning, and prepare a foundation for topics and concepts to come in the fourth quarter.
During our school closure, teachers will provide instructional activities that both review previously taught information and introduce new topics and concepts. While teachers have been instructed not to grade assignments or quizzes of newly-introduced topics or concepts, they may offer assessments to inform their teaching. These formative assessments will be used to monitor student progress and evaluate the effectiveness of instructional activities.
Teachers will be able to grade assignments assigned prior to Friday, March 13, for use when calculating third-quarter grades. It is important to note that the last day for students to submit third-quarter assignments is Friday, March 20, unless otherwise arranged with the teacher.
(Updated at 11 a.m.) While sitting a safe distance away from each other, members of the Arlington County Board voted 4-0 to approve a declaration of local emergency this morning, amid the coronavirus outbreak.
County Manager Mark Schwartz signed the declaration of emergency at 7 p.m. Friday. He said the declaration will allow the county to more easily obtain state and federal funds, acquire needed goods and services, and hire staff as needed.
The county will continue to provide essential services, including emergency services, maintenance, and even permitting during the outbreak, Schwartz said. There will be more changes put in place soon, however.
“We know that these new measures are an inconvenience, but we believe that these changes to county government are Arlington’s best chance of slowing this virus,” said County Board member Katie Cristol.
Arlington is continuing to encourage residents to practice social distancing — avoiding crowds and staying at least six feet apart from each other to prevent the spread of disease — County Board members said in a pre-recorded video, played at the Board’s special meeting Saturday morning.
As of Friday afternoon, all Dept. of Parks and Recreation programs were cancelled. All libraries are closed this weekend, though Central Library and the Columbia Pike branch library plan to reopen on Monday, while others remain closed. Schools are now closed through mid-April.
Schwartz said on Monday a new list of hours and operational changes for county facilities will be posted on the county’s website.
“I hope everyone pays attention to the social distancing, washes your hands, wipes down surfaces — this is going to be with us for awhile,” Garvey said, wrapping up the brief meeting. “Your local government has been working flat out for weeks now. We’re going to continue to do so. Please be safe and gentle with each other.”
At last count, there were five confirmed cases of coronavirus, or COVID-19, in Arlington.
Large crowds of shoppers and empty shelves, meanwhile, continue to be reported at stores in Arlington.
Costco in Arlington, VA @ARLnowDOTcom pic.twitter.com/uiBMTX652L
— Shauna (@smariawalker) March 14, 2020
@ARLnowDOTcom the #PentagonCity @WholeFoods was full of bare shelves again on Friday, including the frozen pizza. #panicbuying continues pic.twitter.com/lzQQljyMdf
— SpartanMSU (@SpartanMSU) March 14, 2020
The #FoodCrisisArlington sees #TraderJoe’s bread section stripped clean – maybe a few bagels hanging around. @ARLnowDOTcom pic.twitter.com/IqQTUBBhU2
— Russell Imrie (@tweedyBard) March 13, 2020
With two cases now confirmed in Arlington, coronavirus is here and spreading. The Arlington County Fire Department, however, says it’s prepared.
“As other organizations begin taking steps to limit chances of exposure to coronavirus, we are prepared to respond to it,” the department said today on social media. “In consultation with [the Centers for Disease Control] and [Arlington Dept. of Human Services], we have the plans and equipment to safely handle potential cases while keeping our members safe.”
“We’re going to be restricting some of our activity,” ACFD spokesman Capt. Justin Tirelli tells ARLnow. While firefighters will still be responding to calls as usual, activities like school groups visiting firehouses and other public events at stations will be cancelled.
Tirelli said firefighters already take “standard precautions” for flu cases — precautions are applicable to coronavirus.
For calls involving patients with flu-like symptoms, firefighters will wear masks, eye protection, gloves and gowns, and will then put a mask on the patient, Tirelli said. After a transport to the hospital for a patient with flu or coronavirus-like symptoms, per standard procedure, the ambulance’s passenger compartment and stretcher will be cleaned with hospital-grade disinfectant.
Tirelli noted that the fire department has not seen a noticeable uptick in calls for people with flu-like symptoms, but ACFD is expecting such calls to increase as the outbreak worsens.
“The question is whether it’s a drastic and sudden increase or a gradual increase,” he said. “We’re hoping for [gradual].”
Tirelli has some suggestions for Arlington residents. First, don’t call 911 or the Emergency Communications Center for general questions or advice, as many people have been doing — the Virginia Dept. of Health has a call center for that: 1-877-ASK-VDH3 (275-8343).
Second, follow the advice of experts to help prevent the spread of disease — everything from frequent hand washing to avoiding large crowds.
“Taking on the extra responsibility of not being around a lot of people is really key,” Tirelli said. “People have to live, we know you have to go to the grocery store, but if you can avoid large gatherings and events… it’s not going to eliminate the illness, but it’s going to slow the spread. A rapid increase [in cases] is going to overwhelm the system and that’s what we don’t want.”
As other organizations begin taking steps to limit chances of exposure to #coronavirus, we are prepared to respond to it. In consultation with @CDCgov and @ArlingtonDHS, we have the plans and equipment to safely handle potential cases while keeping our members safe. #COVIDー19 pic.twitter.com/r7JEHqWPmJ
— Arlington Fire (@ArlingtonVaFD) March 12, 2020
Arlington announced a second “presumptive” case of coronavirus in the county Thursday afternoon.
An individual associated with Christ Church in Georgetown, where a pastor was diagnosed with the disease, developed symptoms consistent with COVID-19 while self-quarantined at home and tested positive for the disease, the county said.
“The individual is currently doing well and is isolated at home,” the county said in a press release. “Arlington County Public Health is working with the individual’s close contacts and advising them as appropriate.”
The county went on to note that “while there may be unmitigated or uncontained community transmission elsewhere in the U.S., based on the limited information available, there is no evidence yet of significant community transmission in the National Capital Region or Arlington.”
The first case of coronavirus in Arlington was reported on March 9. As of 2:45 p.m. Thursday, the Virginia Dept. of Health was reporting 17 “presumptive positive” coronavirus cases.
Also on Thursday afternoon, Virginia Gov. Ralph Northam declared a state of emergency as a result of the outbreak.
More on COVID-19 symptoms and prevention advice, from the county press release:
The coronavirus that causes COVID-19 can cause mild to more severe respiratory illness. In a small proportion of patients, COVID-19 can cause death, particularly among those who are older or who have chronic medical conditions. Symptoms include fever, cough, and difficulty breathing. Symptoms appear within 14 days of being exposed to an infectious person. COVID-19 spreads primarily through respiratory droplets produced when an infected person coughs or sneezes.
To lower the risk of respiratory germ spread, including COVID-19, the Virginia Department of Health encourages the following effective behaviors:
- Wash your hands often with soap and water for at least 20 seconds. Use an alcohol-based hand sanitizer only if soap and water are not available.
- Avoid touching your eyes, nose, and mouth.
- Cover your mouth and nose with a tissue or your sleeve (not your hands) when coughing or sneezing.
- Clean and disinfect frequently touched objects and surfaces.
- Stay home when you are sick.
- Avoid contact with sick people.
- Avoid non-essential travel.