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
Arts Group Pushing for New Venue — “As part of its recently adopted strategic plan, [Embracing Arlington Arts] plans to use the coming three years to build community support for a performing-arts venue that would include a black-box theater and ancillary classroom and office space. Efforts would also be made to identify a site and start raising funds.” [InsideNova]
APS Changing Student Camera Policy — “In response to challenges teachers are experiencing engaging students with cameras off, we have adapted our policy regarding the use of cameras during instruction time, based on input we have received from teachers, staff, parents, the Distance Learning Task Force, and advisory committee members. We are asking teachers to encourage students to turn on their cameras during synchronous instruction and while directly engaging with peers and staff.” [Arlington Public Schools]
Spotlight on Arlington Man’s Heroism — “A must read about Arlington’s Paris Davis, the former publisher of VA’s Metro Herald. His heroism in 1965, while commanding a Special Forces team in Vietnam, seems worthy of the Medal of Honor. But those who served with him say the Pentagon kept losing the paperwork.” [New York Times, Twitter]
Local Nonprofit’s Work Highlighted — “Mohammad Ahmed, 30, gave up working as an Uber driver in March for fear of infecting his wife, 3-year-old son and two elderly parents who live with him. When he couldn’t pay the rent or electric bill for their two-bedroom apartment in Arlington, a local charity funded mainly by taxpayer dollars stepped in.” [Washington Post]
Metro Reducing Rail Service — “Metro this week began reducing Metrorail service during peak commuting hours because of low usage while saying it will boost Metrobus service as new commuting trends emerge during the coronavirus pandemic. The transit agency referred to the changes as a way to ‘normalize’ rail service.” [Washington Post]
Local Economy Expected to Grow — “Greater Washington’s economy will rebound in 2021 as Covid-19 vaccinations become more common and the weather warms up, according to a new regional economic forecast released Friday. That means 3.5% growth in the gross regional product in 2021, a sharp rebound from the 2.9% drop in 2020. But the region will only see a full recovery in 2022, with 4.1% projected growth in the local economy.” [Washington Business Journal]
Many Office Workers Will Stay Remote — “Working in D.C. will continue to look different for the greater part of this year due to the coronavirus, a new study shows. Employers expect less than a third of their employees to physically be in the office in the first quarter of this year, but by the fall, they expect 75% of their staff to be back, according to a study.” [NBC 4, Washingtonian]
Flickr pool photo by GM and MB
More Issues With Vaccination Effort — “Hoagland’s struggle to register for a vaccination started when he did not get a confirmation email back from Arlington County’s Health Department after adding his name to a virtual waitlist. After he got in touch with a representative who was able to confirm his spot in line, Hoagland learned that the county’s system is not able to push confirmation emails to anyone with a Verizon or AOL email account.” [WTOP]
Limited Vaccine Doses Available — “In a conference call with reporters on Saturday afternoon, the Virginia’s vaccine coordinator Dr. Danny Avula said after the current stockpile of over 900,000 first-round doses is exhausted, further doses may be slow coming. Avula said the commonwealth has been told by federal administrators that at least until sometime in March, there will be no more than 110,000 new first-round doses available per week for Virginians.” [WTOP, WRIC]
Teacher Vaccination Kicks Off — From County Board member Katie Cristol: “A great image from @Matt4Arlington, as 900 @APSVirginia educators get their first dose today – with 900 more to follow Monday. We are ready to replicate this scale daily for frontline workers and our community members & will keep fighting for as many doses as the state can send.” [Twitter, Twitter]
Car Crashes into Condo Complex — “A car crashed through a brick wall and into the side of the Barkley Condominiums along Columbia Pike today. No word on injuries.” [Twitter]
Injury at Powhatan Skate Park — From the Arlington County Fire Department: “Earlier today we safely removed a patient during a minor technical rescue incident at Powhatan Skate Park. The patient had minor injuries and was transported to a local hospital in stable condition.” [Twitter]
Fundraising Effort Collects $120K — “More than $120,000 was raised in December to fulfill all of the year-end wishes of 24 Arlington-serving nonprofit organizations, part of an effort sponsored by the Arlington Community Foundation.” [InsideNova]
TAPS Tapped for Inaugural Events — “The Biden Inaugural Committee has announced participants in the virtual ‘Parade Across America’ for Inauguration Day. Two D.C.-area groups have been picked to take part in the parade, including the Tragedy Assistance Program For Survivors, or TAPS, in Arlington, Virginia.” [WTOP]
Reminders: COVID Event, Wednesday Closures — Today at 5:30 p.m., as part of a national event “honoring the lives we have lost to COVID-19,” Arlington is encouraging churches to ring their bells, businesses to light their buildings, and residents to put a lighted candle in a window. Tomorrow, due to Inauguration Day, county government offices and services are closed, and parking enforcement will not be enforced. [ARLnow, Arlington County]
Rent Falling in Arlington — “The median rental price in Arlington for a two-bedroom apartment of $2,032 at the end of the year was down 14.8 percent from March, when the pandemic hit, according to the analysis. Arlington is among of 12 major urban communities that have seen rents fall by more than 10 percent since COVID’s arrival.” [InsideNova, WTOP]
Hotel Guest Arrested for Punching Cop — “Hotel management requested police stand by while they removed individuals from a room for violation of hotel policies. Management advised the guests they would need to leave, and while two of the occupants began to collect their belongings, an argument ensued between them. The dispute continued outside of the room and began to escalate, at which point officers separated the parties. The suspect then allegedly threw an unknown object into the elevator and rushed towards an officer, striking them with a closed fist.” [ACPD]
Compass Apologizes for Rogue Social Post — D.C.-based cafe chain Compass Coffee is apologizing for posting a screenshot of a tweet that said “Republicans are not our countrymen. They are terrorists…” on its Instagram account. “Sorry about this!” Compass said about the post. “Absolutely not what we believe or in line with our values. Currently investigating what / who posted this.” [Twitter]
Bishop Reflects on Capitol Riot — Writes Diocese of Arlington Bishop Michael Burbidge: “The mutual respect we must have for law and order was disregarded. Rather than being treated with respect for the inherently noble work with which they are entrusted, police officers and federal agents in and around the Capitol buildings were, in many cases, attacked, injured and harassed in the line of duty. We should all thank them for their courage and service.” [Arlington Catholic Herald]
Local Nonprofit Has New Leader — “Diana Ortiz, who has more than two decades in the social-safety-net world, has been tapped as president of Doorways, the non-profit safety-net provider. She succeeds Caroline Jones, who departed earlier this year to take a post with the Arlington Partnership for Affordable Housing.” [InsideNova]
Beyer Staffer Tapped for White House Role — “Rep. Don Beyer (D-VA) today congratulated his departing Chief of Staff, Tanya Bradsher, who was appointed by President-elect Joe Biden to serve as Senior Director for Partnerships and Global Engagement on the National Security Council… Beyer announced that his Acting Chief of Staff Zach Cafritz, who had previously served as Deputy Chief of Staff and Legislative Director, would take over as Chief of Staff.” [Press Release]
NY Man Arrested for NYE Gunfire — “The Arlington County Police Department’s Homicide/Robbery Unit is investigating the discharge of a firearm which occurred in the Rosslyn area on the morning of January 1, 2021. At approximately 1:48 a.m., police were dispatched to the report of a person with a gun in the 1500 block of Clarendon Boulevard… officers observed the suspect on the sidewalk holding a firearm as they arrived on scene. The suspect was compliant and taken into custody without incident.” [ACPD]
First Arlington Baby of 2021 — “What a way to ring in the #newyear! Welcome to the world, Mohamed! Our first [Virginia Hospital Center] #newborn of #2021 was born at 1:18 am this morning. Congratulations to the family, and thank you for letting us celebrate the new year with your bundle of joy!” [Twitter]
Parent Files Suit Against APS — “An Arlington Public Schools parent wants his daughter back in class so badly, he plans to file a lawsuit against the district. ‘We started the fundraising today, and we’ve already gotten a lot of great contributions from fellow parents,’ Russell Laird told Fox 5 Wednesday, referring to a GoFundMe campaign launched in an effort to raise $10,000 that would be used to sue Arlington Public Schools.” [Fox 5]
Nat’l Landing Touts Transpo Projects — “National Landing, the renamed neighborhood of Crystal City-Pentagon City-Potomac Yards in Arlington and Alexandria, will become the country’s most connected urban center sometime in the next decade, its business boosters say. Eight major transportation projects are underway in the area, with the aim of turning what is often seen as a busy pass-through into a truly urban neighborhood where residents, office workers and visitors have easy access to local and regional amenities as well as long-distance travel.” [Washington Post]
Local Nonprofit Sees Surge in Aid — “The financial assistance nonprofit Arlington Thrive is helping four times as many people as families are devastated by COVID-19. ‘I was never thinking this would happen in America. I was working hard. I was working three jobs. I lost all three jobs,’ one client, a cook, waiter and ride-share driver, told News4’s Pat Collins.” [NBC 4]
Bikeshare Station Work — “Pardon our dust! In Jan & Feb, some @bikeshare stations in Crystal City, Pentagon City, & Potomac Yard will be replaced, expanded, moved, or removed and may be OFFLINE for a few hours or days.” [Twitter]
Reminder: Bus Changes in Effect — “Riders on the Arlington, Virginia, bus system will once again have to pay fares and enter the bus through the front door starting on Sunday. Arlington County said that both practices were suspended by Arlington Transit (ART) last March, but fares can now be paid by either using the SmarTrip card, SmarTrip app or by exact change at the fare box, while plastic glass barriers have been installed to protect the drivers at the front of the bus.” [WTOP]
DCA Expansion to Open Mid-2021 — “The 230,000-square-foot concourse on the north side of Reagan National Airport looks ready for passengers. The exterior walls are up. The roof is on. The terrazzo floor is almost in. And 11 of the 14 new jet bridges are being installed… The concourse is slated to open in July, but plans are in the works to do a ‘soft opening’ ahead of that date. An announcement is expected early next year.” [Washington Post]
Local Homeless Org Seeking Donations — “An organization in Arlington who helps the homeless now needs your help. Bridges to Independence in Arlington is a family shelter that has had to reduce the number of people they help due to COVID, but the need for help remains high. ‘We’ve served at least 22 new families since the pandemic and we are expecting an increase going into the new year,’ Whitfield said. [WJLA]
County Board to Meet with CivFed — “Immediately following the Jan. 4 organizational meeting of the Arlington County Board, the five members will hold an online gathering with the Arlington County Civic Federation. The 90-minute confab is designed as the opportunity for elected officials to expound on their priorities for the coming year, and for Civic Federation delegates to give feedback to pre-screened questions and, if time is available, questions from the floor.” [InsideNova]
It’s New Year’s Eve — ARLnow hopes you and yours have a happy new year. We are on a limited publishing schedule today; our news coverage will return in full on Monday. County offices and facilities, meanwhile, will be closed tomorrow, on New Year’s Day.
Va. Supreme Court Passes on Pot Prosecution Case — “The Virginia Supreme Court has rejected an effort by Arlington’s chief prosecutor to rein in judges who are skeptical of her refusal to prosecute marijuana possession. But the court did not resolve the conflict, saying it could not weigh in because it had not been asked to consider any specific case.” [Washington Post]
Big Response to Mailbox — “‘We’ve collected at least probably 500 letters in the two weeks that we’ve had the [Santa] mailbox out,’ Rachael Tolman, the Park Manager at Gulf Branch Park said. ‘It’s a lot of letters.’ The lists some children put in the mailbox looked different, with requests for masks and good health.” [WUSA 9]
Nonprofit Merger Complete — “Bridges to Independence, a Northern Virginia provider of housing and vital services for at-risk families and individuals, has finalized its merger with the Bonder and Amanda Johnson Community Development Corp., a community-based non-profit with a mission to address the health, education, financial empowerment and social service needs of people living in Arlington’s Green Valley neighborhood.” [InsideNova]
Pedestrian Struck in Ballston — “Police and medics on scene of a pedestrian struck by a driver in front of the Ballston Harris Teeter on N. Glebe Road. So far, the victim’s injuries sound minor.” [Twitter]
Holiday Pop-Ups in National Landing — “As part of National Landing’s mission to activate public spaces, the BID has unveiled ‘Turn Up the Love,’ a winterlong campaign featuring a series of engaging outdoor pop-ups. These festive installations include a larger-than-life boombox adorned with thousands of colorful ornaments, three shareable photo frames and even more surprises to be announced after the holidays.” [National Landing BID]
Nearby: BB Gun Shootings in FC — “Police investigated calls of vandalism and found a teen who confessed to at least 50 incidents of shooting vehicles and people. Some victims have been identified, but police believe there may be more.” [City of Falls Church]
Ranked Choice Voting Faces Hurdles — “The biggest current challenge? Election software used by the county allows for ranked-choice voting, but only in elections with three or fewer candidates. A pending software upgrade would bring that to five candidates, but ‘I don’t think legally we can limit the number of candidates that can run,’ Reinemeyer said.” [InsideNova]
Levine Running for Lt. Gov. — “Virginia Del. Mark Levine on Monday announced his candidacy for lieutenant governor, joining a roster of nearly a dozen candidates vying for the position. Levine, a 54-year-old Democrat from Alexandria, has served in the state’s House of Delegates since 2016 and represents parts of Arlington County, Fairfax County, and the city of Alexandria.” [DCist]
Credit Union Announces Donations — The staff of Arlington Community Federal Credit Union selected four local nonprofits for the credit union to support with year-end donations: Culmore Clinic, Edu-Futuro, Arlington Department of Human Services’ Secret Santa program and Bridges to Independence. [ACFCU]
Scholarship Applications Open — “The Arlington Community Foundation has a well-established Annual Scholarship Program that in 2020 awarded over $400,000 in college scholarships to 80 new students and 100 renewal students… The scholarship application for the 2021-2022 school year will be available from December 18, 2020, to February 1, 2021.” [Arlington Community Foundation]
Board Balks at Preservation Request — “Efforts to place the 9-acre Rouse estate at the corner of Wilson Boulevard and North McKinley Road into a local historic district appear to have pushed the property owner to move forward with the ‘nuclear option‘… And, county officials say, there is not much they can do to prevent it. ‘Our hands are pretty much tied,’ County Board Chairman Libby Garvey said Dec. 12, effectively rebuffing a request that the county government take stronger actions.” [InsideNova]
Board Responds to Reopening Request — “A request that Arlington County Board members use their influence – whether through sweet-talking or something more forceful – to get county schools back up and running fell largely on deaf ears Dec. 12. Board members said they were working with their School Board counterparts, but had no power to force a reopening of schools that have been shuttered since last March.” [InsideNova]
Local Nonprofit Expands Aid — “Since April of this year [Arlington] Thrive has provided more than $5 million is assistance to 1,300 families and individuals, a dramatic increase from the $805,000 Thrive provided to families and individuals during the same period last year. Typical requests to Arlington Thrive used to be for one or two months rent but since the pandemic now extend to six or seven months.” [Press Release]
Church Continues Drive-Thru Donations — “Clarendon Presbyterian Church recently announced that it will continue holding monthly Drive-thru Food and Toiletry Collections to support our neighbors who are experiencing homelessness. Since the first Collection in June through the most recent one in December, the community donated the equivalent of 756 brown paper bags of groceries – an estimated value of $30,000.” [Press Release]
Northam Proposes State Budget — “Virginia Gov. Ralph Northam (D) on Wednesday proposed a state budget that would restore some spending frozen earlier this year amid uncertainty around the coronavirus pandemic, updating a spending document that the General Assembly just finished tinkering with last month.” [Washington Post]
Flickr pool photo by John Sonderman
Schools Closed, Federal Gov’t on Delay — Due to anticipated icy conditions this morning, Arlington Public Schools has closed schools, though distance learning is still on. Federal government offices have a 10 a.m. delayed opening. [Twitter, Twitter]
Arlington Xmas Decorations Go Viral — Two Arlington homes, next door to one another, have very different approaches to holiday decorating, as seen in a tweet that went viral. [Twitter]
Might Mayor Pete Live in Arlington? — “Pete and Chasten have an affinity for airports — Pete proposed to Chasten at O’Hare in Chicago and Chasten proposed to Pete at an airport in Berlin — so why not live walking distance from DCA? Besides having a great beer bar and Synetic Theater, the area also known as Crystal City is a major transportation hub, which could work in Pete’s favor as he starts his new role.” [Washingtonian, Twitter]
Bill Would Strip Lee’s Name from Arlington House — Confederate General Robert E. Lee’s name is likely to soon be removed from Lee Highway in Arlington, and potentially from his former home in Arlington National Cemetery as well. Rep. Don Beyer (D-Va.) has introduced legislation that would rename what’s currently known as “Arlington House: The Robert E. Lee Memorial” as just “Arlington House.” Arlington County is in the process of removing an illustration of the house, which critics say is a symbol of slavery, from its logo and seal. [Press Release, Twitter]
Funeral for Vietnam War Hero — “Despite the winter elements that hit the [D.C. area] Wednesday morning, Medal of Honor recipient Command Sgt. Maj. Bennie G. Adkins was given modified military funeral honors at Arlington National Cemetery. Adkins died from COVID-19 earlier this year in April at the age of 86.” [WJLA]
Local Nonprofit Gets Grant — “The Arlington-based nonprofit organization, Latinas Leading Tomorrow (LLT) announced their latest financial contribution from the Arlington Women’s Civic Alliance (AWCA) to support LLT’s leadership training and college readiness programs. ” [Press Release]
Huseman spoke with ARLnow about the goals of the celebration, Amazon’s local charitable contributions, the progress the company is making toward its hiring goals, construction deadlines, and the impact of the coronavirus on work.
“We want to convey that we’re on-track and on-target to hire the employees and we want to convey that we’re deeply invested in the community,” Huseman said. “We want to be a good neighbor and contribute to community organizations as much as we can during these challenging times.”
Despite the pandemic, Phase One of construction — on the Metropolitan Park development site in Pentagon City — continues on-schedule, Huseman said. In this phase, a block of warehouses were torn down and two Amazon towers totalling 2.1 million square feet are being built in its place.
Amazon is also funding the $14 million renovation of Metropolitan Park, adjacent to the first HQ2 phase.
Both Phase One and the park are expected to be completed in 2023, when Amazon expects to open its complex. Until then, it is leasing several temporary office spaces in Crystal City.
The second phase of HQ2 should be ready to present to the community and go through the county’s approval process starting in 2021, Huseman said. That phase is expected to include several million additional square feet at the PenPlace development site, one block down from the first phase along S. Eads Street. Amazon recently bought a hotel on the PenPlace block, with plans to tear it down.
Amazon reached the 1,000-employee mark earlier this year, hiring first in Human Resources, Recruiting and Finance. It has 500 open roles currently, Huseman said, and plans to continue its hiring spree for the foreseeable future.
“We’re on-track to meet 25,000 hires over next decade,” he said.
Amazon is sticking to that number even as it grows in Bellevue, Washington, which some have speculated is becoming the “real HQ2.” In September, Amazon announced it would be increasing the number of hires from 15,000 to 25,000 in the city, not far from the company’s Seattle headquarters.
Huseman dismissed the speculation that Bellevue would be supplanting Arlington.
“We have a presence in the Puget Sound region,” he said. “We are growing there, but the key here is that we promised 25,000 jobs and we’re on target for that. That’s what we’re going to deliver.”
And employees at HQ2 will be doing a “whole range of things” from web services to retail. The Vice President of Alexa International, Rob Pulciani, was one of the first executives to transfer to HQ2 with his team to build “the next generation of Alexa services,” Huseman said.
“Whatever Amazon does, you’ve got people at HQ2 doing that,” he said.
As a result of the pandemic, Amazon employees can work from home until June 2021. Most are opting to stay home but the offices are open with temperature checks, frequent disinfecting and social distancing in place. Candidates are interviewing remotely.
“Working from home is pretty effective and collaborative,” Huseman said. “We are able to communicate with video-conferencing and channels that we have with teams across the country.”