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Matthew Seyfert

Matthew Seyfert, right, approached his pastor Chuck Van Houten about his Eagle Scout project, constructing blessing boxes, for local churches. Van Houten reached out to other pastors to see if other houses of worship would be interested in receiving one. Photo from Dave Seyfert

By Rita J. Egan

Blessings have been popping up more and more at churches in the Three Village area thanks to a Stony Brook Eagle Scout.

Matthew Seyfert recently achieved the rank right before his 18th birthday. The Ward Melville senior completed a project where he and other Scouts assembled seven wood structures like the Little Free Libraries found all over Long Island. Called a blessing box, Seyfert said the cabinets will provide spots at seven local churches where congregants can add an item that may be needed by others. The member of Setauket Troop 70 said he completed his project just in time, since boys have until they turn 18 to reach the pinnacle of the program.

Blessing boxes during assembly. Each Scout had a different job during the project including painting and drilling. Photo from Dave Seyfert

“It felt really good, because even though I was a little pressed for time when I started my project, I tried to pick a project that I really didn’t do as a requirement just for completion,” he said. “[It’s] something that would have a larger impact on my community. It meant a lot to me.”

The Eagle Scout said he was watching the news when he heard about a blessing box in Texas, and thought it was a good idea to create a cabinet for his own place of worship, Stony Brook Community Church, among others. The Scout said church members typically fill the cabinet with items like school supplies at the beginning of the academic year, and socks and gloves or nonperishables in the winter.

When he approached the Rev. Chuck Van Houten, Seyfert said the pastor of Stony Brook Community Church was enthusiastic about the project, and reached out to other church leaders through the Three Village Interfaith Clergy group to see who else would be interested in one.

Van Houten said he was impressed with Seyfert’s endeavor, but added he wasn’t surprised, noting how involved the high school senior has been in the church, and the leadership qualities he possesses.

“I thought it was a great idea, especially since one of the main missions or ministries of our church right now is feeding people in the local school district,” the pastor said.

“I thought it was a great idea, especially since one of the main missions or ministries of our church right now is feeding people in the local school district.”

— Rev. Chuck Van Houten

Once a month church members purchase food for a local food pantry, according to Van Houten, who said the Stony Brook Community Church box will mainly be used to house nonperishables. He said the best part is that people can drop off or pick up items every day, all day, unlike a pantry where dates and times can be limited. In the next few weeks, the Seyferts will join Van Houten in finding a place in front of the church for the blessing box, and he hopes that all community members will use it in the future.

Seyfert said while a few church councils were concerned maintaining a blessing Box may be a big responsibility, he explained it would be on a stand and easy to move, adding it’s up to the congregation what they want to fill them with and how often.

The Scout’s father, Dave, said he was proud of his son for coming up with the idea, especially because financial situations can change dramatically with sickness or job loss, and said the need is greater than many would think in the Three Village area. The pair put together a prototype back in November before moving forward.

“I thought it was a well thought out project and well executed,” David Seyfert said.

The Rev. Gregory Leonard of Bethel AME Church in Setauket stands in front of the church’s blessing box. Photo from Dave Seyfert

Matthew Seyfert said future Eagle Scouts need to supervise the projects more than build them, so he got together some fellow Scouts and gave each boy a job based on age. While some did prep-work, others painted and others drilled. His father said local businesses Ace Hardware in Setauket, Riverhead Building Supply, Home Depot, Lowe’s and Omega Moulding Company donated supplies. Seyfert decided they would have roofs in colors that matched each church, after Setauket Presbyterian Church asked what color the boxes would be.

They’ve been placed at six locations so far, including Stony Brook Community Church, Setauket Presbyterian, Bethel AME Church, Caroline Church of Brookhaven, All Souls Episcopal Church and Setauket United Methodist Church. The Scout said he hopes to find a home for the seventh one in the near future. He said he has mixed feelings about the project being over.

“It was a relief, but it was also kind of sad because we were working on it for so long, that it was weird to not be focused on it,” Seyfert said. “But it felt really good to now finally implement them.”

The Eagle Scout project has left him with some advice for other boys looking to achieve the feat.

“Choose something you’re interested in so it’s not as much work,” Seyfert said. “Also, start early. It’s a lot of planning. You really can’t start without planning.”

Local family goes from organizing basket raffles to hosting international symposium

Many battling the autoimmune disease APS Type 1 and their families, above, attended a symposium at Stony Brook University organized by Dave and Sherri Seyfert of Stony Brook. Photo from Sherri Seyfert

By Rita J. Egan

When their son Matthew, now 17, was diagnosed with Autoimmune Polyglandular Syndrome Type 1 11 years ago, Sherri and Dave Seyfert’s world was turned upside down.

The diagnosis led the Stony Brook couple to join the cause to find a cure for the rare autoimmune disease that affects 1 in 2 million people in the United States, and the results of their efforts culminated recently with the Second International Symposium on APS Type 1 at Stony Brook University July 13 through 15, an event they organized and hosted.

“Each time we have a hospitalization or emergency room visit or are in ICU, for the most part we learn something that will keep us out of there for that particular thing next time.”

—Dave Seyfert

The Seyferts with Todd and Heather Talarico of New Jersey founded the APS Type 1 Foundation with the main goal of making physicians more aware of the rare disorder. In the last decade, the families have raised $500,000 for research through fundraising events, which includes basket raffles organized by the Seyferts at the Setauket firehouse on Main Street.

The Seyferts said the basket raffles were always popular thanks to the support of local businesses and residents, and their fundraising success led to the hosting of the July symposium that gave researchers an opportunity to share information. It also provided patients and their loved ones a chance to find a much-needed support system.

Attendees traveled from all over the country as well as Ireland and South America to share their experiences. The couple said life after a diagnosis can sometimes be lonely for families.

“The symposium gave [families] the opportunity to share, to be able to provide each other with support and also listen to the researchers giving them hope that there’s a lot of research going on out there,” Sherri Seyfert said.

The Seyferts said “there are a lot of moving pieces” when it comes to APS Type 1, because the body has trouble metabolizing Vitamin D, which helps in the process of providing calcium to bones and muscles, including the heart.. A patient can experience various symptoms including cramping, bone mass problems and an irregular heart rhythm. However, a triad of disorders identifies the disease: adrenal insufficiency (Addison’s), hypoparathyroidism, and Candidiasis.

The Seyfert’s son Matthew was diagnosed when he was six years old. Photo from Sherri Seyfert

“So everybody is actually a little bit different as far as what conditions they have, even though they’ll share three things,” Dave Seyfert said. 

He said the disease overall is manageable, even though patients can develop something new every decade of their life.

“Each time we have a hospitalization or emergency room visit or are in ICU, for the most part we learn something that will keep us out of there for that particular thing next time,” the father said.

He said the couple chose the university to recognize the contributions of Stony Brook Children’s Hospital  to the community and their quick diagnosis of Matthew when he was six years old. At the time he was experiencing excessive fatigue and suffered a seizure in kindergarten. His father said it took 48 hours for the team at Stony Brook to diagnosis his son. It can sometimes take years to identify the disease in a patient.

The couple said the symposium included a section for children and teenagers to interact separately from adults. Matthew attended the event and assisted in escorting guests and served as a microphone runner during the Q&A.

Dr. Andrew Lane,  professor of clinical pediatrics in the Division of Pediatric Endocrinology at Stony Brook Medicine, and Dr. Mark Anderson, director of University of California, San Francisco’s Medical Scientist Training Program, were among the speakers at the symposium.

“I think that [the Seyferts] are just a fantastic example of encouraging people to believe that for whatever medical condition or other condition in the world they are interested in fixing, even small things can make a difference.”

—Dr. Andrew Lane

“I thought it was really uplifting,” Lane said. “It was really great to see all the families supporting each other. It was also great for the physicians and scientists in the audience to interact, and informally and formally hear each other’s work and help recognize what areas need further work.”

Anderson, who met the Seyferts at the first symposium in Toronto, Canada in 2015, said there is hope for those diagnosed with APS Type 1. He said with stem cell transplants, the thymus, a gland that sits in front of the heart and plays a part in APS Type 1, may possibly be reprogrammed.

“That’s the type of thing that families want to know that someone is working on the problem,” Anderson said.

Lane, who was part of the team that diagnosed Matthew, said the symposium was the perfect opportunity for families to raise concerns directly to internationally recognized researchers in the field, and he is amazed that the family went from organizing basket raffles to hosting a symposium.

“I think that [the Seyferts] are just a fantastic example of encouraging people to believe that for whatever medical condition or other condition in the world they are interested in fixing, even small things can make a difference and sometimes turn into really big things,” Lane said.

Matthew was too shy to comment on the event, according to his mother, but she said the whole family was left with hope after the three-day symposium.

“People were thanking me, and my response always was it’s an honor to be able do this for everyone,” his mother said.

For more information about APS Type 1 and future events, visit www.apstype1.org.