The Fight Goes On: Local family continues search for cure for their son, raising awareness of rare disease

July 21, 2022 | by Ellen Frantz

Steve, Vanessa, Brea and Drew Gunther

In February 2021, TheBurg published a story about the Gunther family’s journey to find a cure for their now 10-year-old son Drew.

Drew was diagnosed with Duchenne Muscular Dystrophy (DMD), a fatal genetic disorder, at age 7, when his pediatrician noticed that he moved slowly and lacked coordination. DMD is found primarily in boys and affects about 1 of every 3,500 children.

Upon receiving this diagnosis, his parents started the foundation, Wishes for Drew, and moved the family from their home in Harrisburg into an RV to drive across the country so Drew could receive stem cell treatment in California.

While in California, the Gunthers lived off the grid in their RV, relying only on generator and solar power. They traveled over 15,000 miles in under a year, traversed the country three times, survived wind storms, scorpion stings, and wild dog and scorpion chases.

Now, a year and a half later, the Gunthers have moved back to Harrisburg, leaving California in March 2021. Drew continues to receive treatment, just closer to home now.

“Treatment was doing pretty well for a while,” said Drew’s dad Steve. “The last couple of rounds haven’t been effective for Drew, so he’s pretty much almost entirely in a wheelchair.”

But the Gunther family is not alone in this fight. Drew started receiving treatment in Pennsylvania with a family friend from Ireland whose son also has DMD. Together, they started “Project Care for the Rare” to support a group of about 20 families from around the world with sons affected by the disorder.

“They’re just trying to seek out something that would work for their boys,” Steve said. “They’re in the same boat as us. They were all told the same thing as us–there is no hope and there is nothing that can be done.”

The parents eventually found treatment in Colombia that is “promising to be superior” than the treatment the boys are getting in the United States, Steve said. The Gunthers and the other 19 families made arrangements for several trips to that South American country. The first is set for the end of July.

Because Drew’s disease is so rare and most of his treatment is experimental, none of his medical bills are covered by insurance. Everything is paid for out-of-pocket by the Gunther family.

“It costs a good $50,000 a year,” Steve said.

That’s why they started their nonprofit organization, Wishes for Drew.

Steve said that local small businesses have always been Wishes for Drew’s biggest supporters. That’s why it’s important to him that their foundation works with these businesses, especially in a post-COVID world. It’s a “community cycle,” Steve explained, where they can help small businesses and small businesses can help them.

Drew’s mom, Vanessa, also makes jewelry to raise money for Drew’s treatment. She uses items like sea glass, guitar strings and wood to make her items, some using specific colors to represent DMD, healing and other rare diseases. Vanessa travels to farmers markets and summer bazaars to sell her jewelry and also sells it on the Wishes for Drew website.

The organization’s purpose is not only to raise funds for Drew’s treatment, but to raise awareness about DMD. The group has held fundraisers, such as “Pint Nights” at local breweries and kayak fundraisers down Swatara Creek. This year, they’re trying to get a team of 20 to 25 people to run the Harrisburg Marathon as a relay, which would make them the largest charity organization represented.

“We’re hoping to become a presence out there and raise awareness,” Steve said. “We want to make people wonder what this group is running for. We can’t expect people to understand a disease that is rare and that people have never heard of. It’s kind of our job to make sure people hear about it because it can affect anyone.”

To find out more about Wishes For Drew, visit their website.

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Weekend Roundup with Sara Bozich

July 21, 2022 | by Sara Bozich

Plan your weekend with my weekly list of things to do around Harrisburg and central PA! Scroll down or use the menu links to find ideas for your weekend.

What you’ll find:

For your weekend planning
Top Weekend Recs
- Thursday
- Friday
- Saturday
- Sunday
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For something new: Get your $20 express facial at NuBorn Skincare at the Broad Street Market on Saturday!

Worth noting: BIG changes are coming in this space! Check out my private Facebook community, Cheers Harrisburg to get the first peeks.

Things on my agenda this weekend: I’ve been working hard, going to take a week off, get a suntan.

Don’t forget to support your local brewery! Click here to find one near you.

For your weekend planning

Celebrate Ice Cream Month with something sweet & spicy
NEW: Debunking 4 Myths about a Hersheypark Season Pass
Plan a getaway – without the hassle
View my local Restaurant Directory or Local Brewery, Winery, & Cidery Directory
See what else you missed on the blog.

Below are options for your weekend.

Things to Do in Harrisburg + Central PA | Weekend Roundup | Sara Bozich

Top Weekend Recs

Enter to WIN a FLIGHT by Yuengling Beach Chair
Enter to WIN iced drinks for you and your besties at Cornerstone Coffeehouse
Don’t miss what’s next in HU’s Summer Concert Series
Make travel plans (with a discount + perks)
Submit your events for the Weekend Roundup

What are you doing this weekend around Harrisburg? Let us know on Facebook, Twitter, or Instagram.

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Nonprofit to memorialize Harrisburg gun violence victims in art exhibit, seeks families to participate

July 20, 2022 | by Maddie Gittens

Portrait of Shahjahan S. McCaskill by artist Stephanie Smith

Harrisburg area families affected by gun violence may have a unique opportunity to memorialize a loved one.

Philadelphia-based Souls Shot Portrait Project is searching for families and friends of gun violence victims to participate in an art exhibit planned for Harrisburg’s Susquehanna Art Museum.

“This is an opportunity for them to have their voice heard and to tell the story they want to tell about their loved one,” said Laura Madeleine, executive director of Souls Shot.

The project, which began in 2016, seeks to honor victims and bring attention to the issue of gun violence. The organization does this by linking artists with families and friends who share stories about their loved one. The artists then paint, sculpt or sketch a portrait of the victim.

Since its founding, the organization has hosted six exhibits, mainly in Philadelphia, with a recent one in New Jersey. However, it is now expanding its reach to Harrisburg.

From Jan. 12 to April 16, Souls Shot will hold an exhibit in the Susquehanna Art Museum in Harrisburg. They are currently looking for families in the city to participate, according to Madeleine. Participation is free. They expect the exhibit to feature mainly victims from Harrisburg, with others from the commonwealth.

Madeleine explained that the exhibits serve to benefit both the families of the victims, as well as the audience that views the artwork. She hopes that the exhibit will move attendees to explore how they can take action to combat gun violence. At the exhibit and on their website, the organization provides resources for those wanting to learn more about the issue or take action.

“Artwork can blaze a trail to the heart and mind,” Madeleine said. “It’s a very bittersweet experience. I’ve never seen someone come to an exhibit and leave not moved.”

While the experience can be difficult at times for the families who participate, Madeleine said, they are always grateful to the artists for listening to their stories.

“We the artists feel like this is using our talents in the best way that we can,” she said.

For more information about Souls Shot Portrait Project, visit their website. For families and friends of victims who are interested in participating, click here. Artists interested in the project can click here. Other inquiries can be directed to soulsshotportraitproject@gmail.com or by calling 215-740-8678.

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Dauphin County Cultural Fest to return to City Island, highlighting the region’s diversity

July 20, 2022 | by Ellen Frantz

Festival attendees watch a performance at last year’s Cultural Fest.

For one special event, Harrisburg’s City Island will become a hub for cultural food, music and dance from around the world.

Dauphin County once again will host its 14th annual Cultural Fest on Aug. 20 on City Island to showcase the wide-ranging cultural backgrounds of the county’s residents.

“Cultural Fest is a celebration of diversity and the ability to realize that our diversity is our county’s greatest strength,” said county Commissioner George Hartwick.

The event is free and will take place from 3 to 10 p.m.

Festival attendees can expect to see performances from Irish, Latino, Chinese and African dancers and singers, among others from across the globe. To conclude the night, R&B group Dru Hill will perform as part of their 25th anniversary tour.

“Music unifies us,” Hartwick said of the scheduled performances.

Various ethnic food trucks will set up shop at the festival, selling dishes from across the globe, as well as other vendors and a kid’s corner sponsored by UPMC. Hartwick added that there will be resources for community members struggling with homelessness, addiction and mental health issues, as well.

In previous years, the festival has drawn crowds of around 25,000 people.

Hartwick summarized his goal for the festival in one word–love.

“We do not have to agree but we are diverse,” said Hartwick. “There is an opportunity to learn. We want to plant seeds and build relationships.”

More information on Cultural Fest can be found on the county’s website.

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In hands-on learning, Steelton-Highspire students work with Home Depot to beautify school

July 20, 2022 | by Maddie Gittens

Steelton-Highspire Jr./Sr. High School students and Home Depot volunteers paint outside the school building

Steelton-Highspire Jr./Sr. High School will look a little brighter after a beautification project by students and community members.

On Wednesday, students completing summer programming mulched, painted and built picnic tables with volunteers from Home Depot, which awarded the school a nearly $20,000 grant for the project.

“It’s like true community,” said Eleni Cordero, Jr./Sr. High principal at Steelton-Highspire. “The financial aspect is the bonus. The real thing to me is we are changing the culture of education.”

This summer, programming for the district’s credit-deficient students is a lot more hands-on, Cordero explained. Students have been planning, designing and proposing projects to complete during the summer months, using math, computer and science skills along the way, she said. Wednesday’s work was an effort to put their planning in action.

“Our kids want hands-on engagement,” Cordero said. “They’re going to be able to come to school and say ‘I built that.’”

Steelton-Highspire Jr./Sr. High School students and Home Depot volunteers

During a trip to a Home Depot in York for a personal home project, by chance, Cordero met Manager Tedd Terry who had volunteered for a project at Steelton-Highspire Elementary School 15 years ago. Now, he was interested in the project the school was undertaking this year.

According to Terry, the corporation has a grant program to support community projects, and what the high school was doing was a perfect fit.

“We are always looking to be able to reach into the community,” he said. “One of our values is giving back.”

On Wednesday, 50 Home Depot volunteers from across nine local stores worked alongside students, teachers and administrators to landscape, paint, build and mulch. But this is only the start, as volunteers plan to return to complete more work at a later date, Terry said.

“It’s a huge deal and will help our district move forward,” Cordero said. “This is just the beginning.”

As ninth-grader Taniah Jackson rolled blue paint onto a column in front of the school building, she said that she didn’t expect to be doing projects like this at school. She had never painted before, but was enjoying the hands-on learning experience.

“The mindset about summer school used to be, ‘I failed,’ but now I have kids saying they want to come,” Cordero said.

For more information about the Steelton-Highspire School District, visit their website.

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Harrisburg Police Bureau to host National Night Out, featuring food, fun, community

July 20, 2022 | by Ellen Frantz

A past National Night Out event

The Harrisburg Police Bureau will offer residents a night of family fun and a chance to interact with first responders next month during National Night Out.

The event, which will run from 6:30 to 8:30 p.m. on Aug. 2 at Camp Curtin Academy, will feature food, music, entertainment and games from local businesses, churches and other community groups.

“National Night Out celebrates community policing and engagement,” said the bureau’s Director of Community Relations and Engagement Chardan Huston. “The goal is to have the police interact with the community they serve.”

National Night Out is a block party that occurs across the country on the first Tuesday in August to promote “police-community partnerships and neighborhood camaraderie to make our neighborhoods safer, more caring places to live,” according to the organization’s website.

This will be the city’s fifth year hosting National Night Out. The bureau plans to offer activities for families to interact with their local first responders. Kids can explore the inside of firetrucks and police cars and dunk police cadets at a dunk tank, among other activities. There will also be a booth set up for voter registration, and handouts about public safety will be distributed.

Attendees can enjoy carnival games, pony rides and food, like Farm Show milkshakes.

Huston said that she wanted to incorporate more art into the event this year. During National Night Out, four local artists will paint on canvases that will eventually become a mural that will be displayed in the Public Safety Building.

The event is free to attend and free for vendors who sign up.

For more information on National Night Out and for the vendor form, go to the Harrisburg Bureau of Police’s website.

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“Hot Spot Saturdays” aims to get Harrisburg community involved in illegal dumping fight

July 19, 2022 | by Maddie Gittens

An illegal dumping site in Harrisburg (file photo)

Harrisburg residents often show up at City Council meetings to complain about trash and blight in their neighborhoods.

In response, council member Ralph Rodriguez spurred the creation of “Hot Spot Saturdays,” a summer initiative aimed at involving both residents and the city in cleaning up illegal dumping sites.

“My hope is to empower our residents,” he said. “They need to know they have the power to make the change.”

Throughout July, August and September, the city, volunteers and local nonprofits will spend time removing trash from places that the Public Works Department has identified as hot spots for illegal dumping. The locations will include several neighborhoods, including areas in Uptown, South Harrisburg and Allison Hill.

“Hot Spot Saturdays” will take place on the following days:

July 23
July 30
Aug. 7
Aug. 20
Sept. 9
Sept. 10

All events will run from 10 a.m. to 2 p.m. Locations will be assigned to those who register.

In addition, the city will utilize cameras at hot spots to monitor illegal activity, Rodriguez said.

All volunteers will participate in training sessions before the cleanups. Rodriguez said that he hopes that the educational aspect of the event will encourage people to continue the beautification work even after “Hot Spot Saturdays” is over.

The city will collect trash in its trucks during each cleanup and has partnered with Lancaster County Solid Waste Management Authority (LCSWMA) for disposal services.

This may be a summer initiative, but Rodriguez sees this as the start of long-term change. He hopes to make it an annual event.

“I believe we should start making some really great leeway,” he said.

For more information about “Hot Spot Saturdays,” call 717-557-2045 or email [email protected]. To register as a volunteer, click here.

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Local church to host “Faith Into Action” with Harrisburg park cleanups, block parties

July 18, 2022 | by Maddie Gittens

File photo of 4th and Dauphin Playground in Harrisburg, a service location for this week’s “Faith Into Action” event.

This week, volunteers will work to beautify Harrisburg’s parks and bring the community together around them.

Students from several local churches will come together for “Faith Into Action,” an annual service project to clean up city parks and host community block parties from July 19 through 23.

“It’s a way for us to give back to the community,” said Missy Cook of Harrisburg First Assembly of God Church, the organizer of the event.

About 40 students will arrive in Harrisburg on Monday and prepare to spend the following days volunteering in the city, Cook explained. This is the 18^th year that the church is hosting the event. The group has partnered with the city for the event.

Each day, the volunteers will work in a different park, conducting a cleanup in the morning and holding family activities for community members in the evening. They plan to set up games and inflatables and incorporate live music and speakers. All activities are free to participate in.

The group will hold clean-ups and block parties at the following locations:

July 19: Cloverly Heights Park, 1801 Pemberton St.

July 20: 4^th and Emerald Playground, 4^th and Emerald streets

July 21: Sunshine Park, 12^th and Herr streets

July 22: Reservoir Park Pavilion, 100 Concert Dr.

July 23: 4^th and Dauphin Playground, 4^th and Dauphin streets

A children’s program will take place from 1 to 3 p.m. There will be inflatables, games and food available from 3 to 5:30 p.m. A pre-show service will begin at 5:30 p.m., with live entertainment starting at 6 p.m.

“Volunteer groups such as ‘Faith Into Action’ are paramount to the city’s mission in keeping our parks beautiful and safe for years to come,” said Parks & Recreation Director Dave Baker. “We truly value the work they’ve done in past years, and hope they, and other community-based groups like it, will continue to share their time in the future to help beautify the city.”

For more information on “Faith Into Action,” visit Harrisburg First Assembly of God’s website.

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Fun Run: Harrisburg Mile to return to the riverfront for 41st year

July 18, 2022 | by Ellen Frantz

The 2021 Harrisburg Mile

The annual sprint down Front Street is back.

The Harrisburg Mile will race down Front Street on July 20, giving local runners a chance to show off their speed.

The race course spans one mile down the road, which will be closed to traffic. The race starts at Maclay Street and ends at Boas Street. It benefits the East Shore YMCA, which offers programs like childcare and scholarships to the Harrisburg area community. Since the race was founded 41 years ago, it has raised over $600,000 for the YMCA.

The first heat of the race will begin at 5:15 p.m. and the final heat starts at 7:45 p.m.

The heats are broken down by 10 different groups.

In the “Fun Run” heat, kids can run the race as a Wink 104 DJ plays music at the finish line. The YMCA “Champions Against Cancer” heat will include cancer survivors and their communities running or walking the mile. Other heats include the “Corporate Challenge,” the “Half Pint Half Mile” and the “Elite Mile,” as well as heats divided into age groupings.

Food and beverages will be available at the finish line.

An awards ceremony will conclude the evening, where medals will be presented to the top three men and women with the best race times.

First National Bank is the sponsor for the event.

For more information on the Harrisburg Mile, visit their website.

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The Week that Was: News and features around Harrisburg

July 15, 2022 | by Lawrance Binda and Maddie Gittens

PA Secretary of Agriculture Russell Redding and The Bridge CEO Garry Gilliam at the organization’s “bleacher garden”

Celebrate 3rd in the Burg tonight (Friday) with some of TheBurg staff at Sip@SoMa! Before you head out to enjoy a night around the city, catch up on this week’s news from around the Harrisburg area, below.

Bob’s Art Blog highlighted two artists who share a passion for sustainability. In Bob’s July column, read about Phil Wells of Millworks Studio 213 and local jewelry maker Jennifer Hara, here.

The Bridge Ecovillage showed off its “bleacher garden” to state Secretary of Agriculture Russell Redding during Urban Ag Week, our online story reported. The garden, located behind The Bridge’s building and former Bishop McDevitt High School, provides produce to local residents in need.

Children of Gettysburg 1863 is a new museum that provides hands-on learning opportunities for kids. In our magazine story, read about how the museum teaches history through books, scavenger hunts, puzzles and interactive displays.

Detweiler Park in Middle Paxton Township is on track to receive a multi-million-dollar renovation, our magazine story reported. The project will include constructing event and gathering spaces, bathrooms, additional trails and other amenities.

A Harrisburg basketball league is bringing community and unity to Reservoir Park, our magazine story reported. The organizer, Foundation 717, hopes to make the league a place for positivity in the midst of competition.

Harrisburg’s downtown post office is moving to a new location, our reporting found. Harristown Enterprises announced that the Federal Station Post Office will relocate about one block away, inside of Strawberry Square.

Harrisburg plans to apply for $18 million in state COVID relief funding, our online story reported. The city has proposed using the money for park, pool and Public Safety Building renovations.

Home sales fell this month in the Harrisburg area while prices rose, our reporting found. For the three-county region, a total of 770 houses sold, compared to 826 in June 2021, as the median price rose to $264,050 from $230,000 last year.

The Keystone Inn is Gettysburg’s first Black-owned bed and breakfast, our magazine story reported. The inn’s opening comes at a time when B&B-based travel is surging following the pandemic.

The Maclay Street Bridge is set to be replaced by PennDOT, our reporting found. PennDOT has opened the comment period for the project, which will remain through Aug. 5.

Palmyra resident Richard Powell judges show dogs at the highest level, our magazine story reported. Last month, the 77-year-old was a judge at the 146th annual Westminster Kennel Club Dog Show.

Sara Bozich has lots of live music on the weekend lineup, as Harrisburg University Presents kicks off its summer concert series. Additionally, there are pop-up markets, food truck festivals, art events and something for everyone this weekend.

A Ukraine benefit concert will be held on Aug. 14 at Whitaker Center in Harrisburg, our online story reported. Neighbors Debra Yates and Sheldon Jones organized the concert after deciding they wanted to do something to help the war-torn country.

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Friday

Saturday

Sunday

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