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
Love Notes in Rosslyn — “In honor of Valentine’s Day, we created Rosslyn Love, a community-wide free activity where anyone in the DMV could submit a message to be displayed across four temporary murals outside of 1550 Wilson Boulevard in Rosslyn. Whether it was for a partner, a friend, coworker, family member, healthcare professional or even just a favorite spot around the neighborhood, we received over 400 messages of love and gratitude.” [Rosslyn BID]
Dems Keep Focus on Equity — “The Arlington County Democratic Committee in early March is expected to make its ad-hoc Inclusion and Equity Committee a permanent standing committee. The goal, deputy party chair Maggie Davis said, was to ‘do better including more people that look like the population of Arlington’ in Democratic Party activities.” [InsideNova]
Local GOP Surveying Members — “The Arlington County Republican Committee is in the midst of surveying its membership in hopes of making the party and its meetings more relevant to the rank-and-file and broader community. ‘Dozens of Arlington Republicans have already taken the time to complete this survey, and their responses are thoughtful and thorough,’ said Matthew Hurtt, the Arlington GOP’s communications director.” [InsideNova]
Police Investigate Sexual Battery in Arlington Mill — “The victim was walking in the area when she noticed the male suspect walking behind her. The suspect approached the victim, grabbed her waist and thrusted himself against her multiple times while making sexual comments. The victim continued walking and, as she approached her residence, the suspect re-approached her and brushed his hands against her breast. The victim was able to enter her residential building and close the door, preventing the suspect from following her inside.” [ACPD]
Air Force Vet Still Standing Up to Cancer — “‘Pat’ Malone, a seven-year cancer survivor, and 20-year Air Force veteran will ‘stand up to cancer’ for 24-hours straight, during his Seventh Annual Stand Up To Cancer® (SU2C) 24-Hour Fundraiser, beginning at 4:26 p.m. on Wednesday, February 10, and ending at 4:26 p.m. on Thursday, February 11, 2021, at Fire Works American Pizzeria & Bar, 2350 Clarendon Blvd.” [The Zebra]
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]
Arlington County police are investigating a series of overnight break-ins at the Arlington Forest Shopping Center.
Thieves smashed windows and forced their way in to three businesses, stealing cash. Another business was reportedly damaged but the thieves — or thief — did not get in.
“At approximately 7:33 a.m. on January 7, police were dispatched to the late report of a breaking and entering in the 4800 block of 1st Street N.,” Arlington County Police Department spokeswoman Ashley Savage tells ARLnow. “Upon arrival, it was determined that unknown suspect(s) forced entry to three businesses, causing damage. The suspect(s) rummaged through items and stole an undisclosed amount of cash. Police remain on scene investigating.”
ARLnow has received numerous tips about the break-ins from outraged neighbors.
“The cleaners, Bricks Pizza, and Thai place had their front doors smashed and interiors ransacked,” said one. “Sense of Place’s door was damaged but not destroyed.”
“Significant damage to already struggling local businesses thanks to Covid,” said another neighbor. “The neighborhood is devastated and want answers.”
A GoFundMe page has been set up to help the business owners and, as of about 10:30 a.m., has already raised more than $2,500.
“This is just garbage — hurting literal mom and pop businesses who are so good to us and our community,” the organizer of the campaign said in an email to ARLnow. “The Bricks guy gives my dog water in the summer. The cleaners are the kindest most hardworking people. The coffee shop is a treasure. Crystal Thai has been my favorite Thai food for almost 30 years.”
“All three businesses will need new doors to get up and operating again ASAP,” the GoFundMe page says. “The total amount donated will be split equally between the cleaners’, Bricks, and Crystal Thai. Please give if you can.”
Photos courtesy Stephen Trickey
Through the initiative — part of the council’s pandemic relief efforts — the CCPTA is partnering with FRESHFARM Markets to provide fresh food to about 900 families who have been receiving food through seven PTA and school-based distribution sites. Fundraising will go until Dec. 4, with an extra push today (Dec. 1) for Giving Tuesday.
The food will be given out at the regular distribution times during the week of Monday, Dec. 14. So far, the council is more than halfway toward its goal: $11,851 of $20,000 has been raised as of publication time.
“We must ensure that children and their families do not go hungry,” said Emily Vincent, the CCPTA President in a statement. “Addressing food insecurity is essential to both well-being and education, as it is difficult for children to learn when they are hungry.”
Families have been able to access food, school and cleaning supplies, baby items and masks at the distribution sites since the spring, Vincent said. During the summer, these sites served approximately 2,500 families.
The work supplements the meal distributions organized by Arlington Public Schools.
“Our volunteer efforts are committed to serving their school communities and they are hopeful for a more sustainable and robust support system coordinated by Arlington County in the new year,” Vincent said.
The drive also supports local farmers, who have struggled to profit from their produce this year due to the pandemic.
In addition to running farmers markets in the D.C. area, FRESHFARM distributes local produce to small institutions such as daycares, which often lack the money and bulk needed to buy from larger distributors.
The arm of the nonprofit responsible for this program, Pop Up Food Hub, will purchase the food for the CCPTA fundraiser. A $22 donation to this food drive covers a week’s worth of produce for a family of four.
“While families have been grateful for the various types of food assistance that are available in the neighborhood, many have requested assistance with obtaining fresh food beyond the non-perishable pantry food products and single serve meals,” the donation page said.
Many food drives focus on packaged goods because they last and can be bought cheaply, said Sebastian Muenchrath, an operations manager for Pop Up Food Hub. But that pushes fresh fruits and vegetables to the side for hungry people who need a balanced diet, too.
The bags will rely on long-lasting winter staples such as squash, onions, apples and potatoes, with some leafy greens, although they are scarcer these days.
The CCPTA has “been great at understanding what the local supply looks like right now,” he said.
The Arlington Historical Society is raising $50,000 for a feasibility study to renovate its home at the Hume School (1805 S. Arlington Ridge Road).
What is now the Arlington Historical Museum was originally constructed in 1891, and is the oldest schoolhouse in Arlington. The school was turned over to AHS in the 1960s, and now needs renovations.
“The end result will be the creation of something sorely lacking in our Arlington County — an updated first-class museum reflecting our history, our accomplishments and the lives of those who have lived here,” said AHS member Frank O’Leary in an email. “If we do not start now, then when?”
O’Leary is also a trustee of the Warren G. Stambaugh Foundation, which is planning a virtual AHS fundraising event honoring Stambaugh, a former member of the House of Delegates who wrote the Virginians With Disabilities Act. The foundation will match funds raised for the AHS renovation project at the “I Remember Warren” event.
O’Leary said the AHS renovation will take a number of years to accomplish. Donations can be made on the AHS website.
“Our immediate objective is to raise $50,000 to fund the feasibility study of the existing structure, its deficiencies, and necessary improvements, and specific steps that must be undertaken to create a state-of-the-art local museum,” O’Leary said. “In short, as an immediate objective, we seek to create a detailed plan or ‘blueprint’ and then AHS will proceed on its enactment.”
The AHS to-do list includes:
- New drop-down ceilings on all floors, or the restoration of the original ceiling
- New windows
- New paint
- Climate-controlled storage for artifacts
- Americans with Disabilities Act access to the second floor
- Second floor display area
- Basement renovation for improved storage
- New exhibit cases
- Security upgrades
- New interpretive signs
Photo via Arlington Historical Society/Facebook
Even COVID-19 could not stop an opportunity for adorable pet photos around the holidays.
During two weekends in November, local pet owners can get family portraits ready for seasons-greetings cards with the holiday edition of Porch Portraits, a pandemic-proof fundraiser by the Animal Welfare League of Arlington.
“Have a holiday pajama party, bring out your favorite party looks, deck your pet in their holiday gear, any holiday fun you’d like to capture,” the announcement from AWLA said.
The organization has hosted holiday “Pet Pawtrait” sessions before, but this year will look different: The event will span three days and will be socially distanced. Sessions will take about 10 minutes, with a minimum donation of $100, and participants will receive at least three professional digital images within 10 days.
As holidays approach and the pandemic continues, AWLA is focused on supporting the community as people cope with job losses, including via its pet pantry and veterinary support, AWLA Events Coordinator Hollie Dickman said.
“We never want food or resources to stand in the way of people keeping their pet,” she said. “We want to keep pets with the people who love them as much as we can, especially during holidays and COVID-19.”
Sessions are open for Nov. 14, 21 and 22 and participants must be residents of Arlington or Alexandria. Registration for sessions on Nov. 14 end Sunday, while registration for the weekend of Nov. 21-22 ends next Sunday, Nov. 15.
Participants select the date, but AWLA will coordinate times so photographers can do back-to-back sessions in the same neighborhood. Times may range from 8 to 11 a.m. and 4 to 6 p.m.
Those who want to notify AWLA of times that do not work for them are asked to contact Dickman at [email protected]
Participants must have a porch in front of their house or an outdoor area, such as a park, in front of their condo or apartment complex where pictures can be taken.
All portraits will be taken from a 6-foot distance with no direct contact between the photographer and the household, the announcement said.
This is the second socially-distant porch portrait session AWLA has run to raise funds this year. The first occurred in May, two months into mandated restrictions due to COVID-19.
Leonard had been doing porch portraits during the pandemic and asked to donate his services to AWLA as a fundraiser, Dickman said. The impromptu fundraiser generated $3,000 from 25 participating families.
“I thought that was a great success,” she said. “We are anticipating a similar turnout, we hope to see that $3,000 raised again.”
Family portraits courtesy of Hollie Dickman. Christmas dog (top) via AWLA/Facebook.
Charlene Nguyen was 18 years old when she fled communist Vietnam for Virginia.
She landed a job at Arlington’s Old Dominion Cleaners (4036 Lee Highway) in 1985, and finally lay to rest the two years she spent living in fear of communists and surviving on meager portions of rice.
In 1996, she and her husband Tien, who she sponsored when he came to the U.S., took over the dry-cleaning business. They have operated Old Dominion for the last 25 years, greeting customers by name and treating them like family.
But the new work-from-home normal has almost completely erased that quarter-century of work. Like other local dry cleaning businesses, Old Dominion Cleaners is hurting.
“It’s heartbreaking to see my business going down so fast since mid-March,” Charlene Nguyen said. “It went down 90% and hasn’t bounced back. We have to open every day, but we don’t have customers because people aren’t going to work.”
The business is on the brink of closure, and has not benefited from any local and state grants. Last week, however, devoted customers teamed up to give the family business a boost.
On Sept. 26, Alex Berger and Kelly James set up a GoFundMe page. Their team also includes Alan Wade, Maria Voultsides and Matt Mendelsohn.
Mendelsohn, a photographer with a studio in Arlington, decided to charge a minimum sitting fee of $50 for pet portrait sessions that would benefit the GoFundMe campaign. As of Monday afternoon, the group effort has raised nearly $15,000.
Few are getting their clothes dry cleaned these days, said Mendelsohn, who used to bring his suits in before photographing weddings. When he dropped off clothing last week, the racks that are normally full of customer clothing were empty, he said.
The studio photographer is known in town for his portraits of pets and their humans, which he has taken for the last 15 years, as well as his headline-grabbing, socially-distanced photos of 2020 Yorktown High School seniors.
Normally, when Mendelsohn hosts his annual Dog Day Photo Marathon, he does not charge a sitting fee, but this year he asked patrons to donate to the GoFundMe and show him the receipts.
The marathon took place on Sunday, and 25 people sat with their pets for portraits.
“It was beautiful and fun. We made gorgeous pictures and had a good time,” he said. “It takes zero effort to help people out.”
Mendelsohn said Charlene is known in the community for her cheer, work ethic and humor. For years, when the photographer brought in his suits, she would give him lollipops for his daughter. Now, his daughter is 17 years old, and they talk about Charlene and her college-aged kids.
“She’s fantastic,” he said. “She’s always cheery and never in a grumpy mood, even though I’m in a grumpy mood.”
The GoFundMe organizers spent one week fundraising, which is not a lot of effort compared to the 25 years that Charlene has spent being kind to customers, Mendelsohn said.
Charlene came through once more for her customers when the country experienced mask shortages earlier this year. She and her staff made about 400 masks a week from fabric that Charlene had from when she used to sew custom shirts.
They gave out the masks for free.
After the Nguyens helped customers protect themselves, fundraiser organizers say it is time to help them in return.
“It’s like ‘It’s A Wonderful Life,'” Mendelsohn said. “George Bailey is in trouble and people rallied. So we rallied, and hopefully that gives them some breathing room.”
The gift has left Charlene at a loss for words.
“I don’t know how to say it, but I want to thank everybody who is helping us out,” she told ARLnow. “Words can’t be enough.”
An Arlington pet rescue and a Dulles brewery have joined forces for a unique fundraiser that will help find new homes for dogs and cats in need.
The Lost Dog and Cat Rescue Foundation has partnered with Solace Brewing Company for the second year in a row to produce a special Rescue Ale that will be sold to raise money for the nonprofit, which is dedicated to rescuing homeless, abused, and neglected pets and facilitating their adoption.
This year’s Solace-produced Rescue Ale is an India Pale Ale brewed with mosaic and Amarillo hops at 7% alcohol by volume. It will be available for sale at the Solace Brewery on Oct. 8 and at all Lost Dog Café locations — including on Columbia Pike and in Westover — starting at 5 p.m. on Oct. 9.
The collaboration enables the rescue foundation to continue an annual tradition of working with local breweries despite challenges caused by the need for social distancing during the pandemic.
“Our annual fundraiser has always been an extremely important driver for engaging with the broader community, garnering resources, and ultimately gaining supporters that strengthen our important rescue mission,” Lost Dog and Cat Rescue Foundation public relations manager Kim Williams said. “With the generosity of Solace Brewing Co., the Rescue Ale tradition is still alive, and people can enjoy a charitable beer in the comfort of their home while supporting a worthy cause.”
A portion of all Rescue Ale sales will be donated to the foundation.
The Lost Dog and Cat Rescue Foundation first started working with local breweries to develop special Rescue Ales in 2017 when the nonprofit partnered with Alexandria’s Port City Brewing Company.
Owned by Lost Dog and Cat Rescue Foundation founders Pam McAlwee and Ross Underwood, the Lost Dog Café originated in Arlington and now also has locations in McLean, Dunn Loring, and Alexandria.
In the past, the Lost Dog and Cat Rescue Foundation hosted large fundraising events like a “Paws Vegas” carnival held at Solace Brewing Company last October, but because crowds currently pose public health risks, the nonprofit has pivoted instead to an auction with tickets for a private tour of Solace Brewing Company.
On top of a guided tour, ticket winners will get to see the canning process for this year’s Rescue Ale and receive a catered lunch, a four-pack of the Rescue Ale, Lost Dog Café and Solace Brewing Co.-branded pint glasses, and a Rescue Ale 2020 T-shirt.
Bidding on the “Behind the Brew: Rescue Ale Canning Day Fundraiser” tour started on Sept. 23 and closes at 12:00 p.m. on Oct. 26.
The Lost Dog and Cat Rescue Foundation is also holding an outdoor adoption event at Solace Brewing Company on Oct. 10. Masks and adherence to social distancing rules will be required.
The foundation, which has a rescue care center facility in Falls Church, says it has rescued 2,183 pets and facilitated the adoptions of 2,015 dogs and cats in 2020 so far.
A grieving mother in Arlington turned her pain into a passion of raising awareness for pediatric cancer while contributing to a fundraiser for research.
Michele Fleming lost her son, Nathan, to cancer a week after his 18th birthday last September.
“Nathan was unbelievably strong, never wanting to reveal his pain or be defined by his cancer. He remained positive and a joy to be around throughout his struggle,” Fleming said about her son’s battle with cancer. “Nathan’s resilience, compassion and fierce determination to fight and overcome, motivates me everyday to do what I can to help other kids and their families win their battle with Nathan by my side.”
Since losing Nathan, Fleming has partnered with Alex’s Lemonade Stand Foundation and 1,641 other fundraising teams to host the foundation’s “Million Mile” event that raises awareness and provides funds to researchers for pediatric cancer cures.
The collective goal for this month-long event is to log one-million miles from virtual races and raise $1 million for the organization’s childhood cancer research fund.al
“Turn awareness into action, by joining The Million Mile, the largest childhood cancer awareness challenge that funds researchers so they can find better treatments and more cures for kids battling cancer,” the website said.
“We’ve recruited 169 members from Arlington to Georgia, Florida, South Carolina, Illinois, California, North Dakota, and London to participate in ALSF’s Million Mile event,” said Fleming.
Although they have not quite hit their goal yet, Fleming said she is thrilled with the amount of support the team is receiving.
“So far, we’ve raised an amazing $44,789, which will fund 896 hours of critical research! We’re blown away by all the support and I know that Nathan is cheering us on” said Fleming.
Numerous local businesses have contributed to the fundraiser, despite the pandemic hurting the finances of many.
“Arlington’s Arrowine, Harris Teeter, Pastries by Randolph, Lyon Hall, Massage Envy, Pupatella, Cook Architecture, Andre Chreky Salon Spa, and Taqueria El Poblano,” have all donated gift certificates or directly to the fundraiser, Fleming said. The Starbucks at the Lee Heights Shopping Center and Capital Laser & Skin Care in Bethesda also donated, and Pie-Tanza is donating 10% of its sales every Tuesday during the month, she added.
“We’re overwhelmed by all the support from the community,” said Fleming.
Additional donations can be made all month long by joining Nathan’s team. The donations are being matched by Volvo from Sept. 24-27, according to Fleming.
Photos courtesy Michele Fleming, Michael Fleming and Lyle Kimms
Thirty-three pets rescued from the devastation in Beirut, Lebanon are now in Arlington, awaiting adoption.
The Animal Welfare League of Arlington posted a video (below) of the Beirut blast rescues arriving at the airport and at the shelter near Shirlington. AWLA is now seeking new homes for the nearly three dozen dogs and cats.
More from an email sent to AWLA supporters on Thursday:
After a long journey from Beirut, Lebanon, 15 dogs and 18 cats arrived at AWLA last night to start new lives in the USA.
After the explosion in Beirut last month, Animals Lebanon immediately mobilized. For weeks they have worked tirelessly, rescuing animals who were injured or trapped in rubble, and reuniting as many pets as possible with their owners.
But the devastation was unimaginable.
Hundreds died. Thousands were injured. Hundreds of thousands remain homeless. Although Animals Lebanon stepped up to assist families, many could no longer keep their pets after losing family members, losing their homes, or being forced to leave the country.
Humane Society International (HSI) reached out and asked if AWLA would be able to take in some animals from Animals Lebanon. Without hesitation, we said YES and promised to do everything we could to help.
Animals Lebanon saved them from the wreckage. HSI flew them overseas.
All 33 animals will be staying in the shelter or in foster homes while they adjust to their new surroundings and we get to know them a little better. So many are scared and shy, several require urgent medical attention, and they all need a lot of TLC.
AWLA spokeswoman Chelsea Jones said the organization doesn’t usually take in pets from overseas, but the Beirut explosion is a special case, in part because of the work of the Humane Society.
“Since HSI did all the work getting them to Dulles Airport — we just had to pick them up!” she said. “I do know that getting that many dogs and cats on international flights takes a lot of organization and paperwork, so I’m sure they worked very hard to get it done. We don’t take international transfers very often, as we are mostly focused on helping local organizations, but we had the space to help in this situation.”
“It feels great to finally have the dogs and cats in their care,” Jones added. “The cats are all very friendly and social, and while the dogs are a little shy, we are excited to help them adjust to their new surroundings. We are so happy that we’ve been able to help these animals that have been through so much.”
Some of the cats are already up for adoption and ready to go home, according to Jones.
“We expect the rest of the cats will be available for adoption very soon,” she said. “Some of the dogs need to be spayed/neutered or medical issues, so we have to address that first. And then of course some of the dogs are very scared and unsure of this new step in their journey, so we will give them whatever time they need to adjust.”
AWLA is hoping to raise money for the care of these and other pets through its 2020 “Walk for the Animals” event.
The annual fundraiser, set for tomorrow (Saturday), has raised more than $77,000 of its $100,000 goal.