Giving Thanks: Acknowledging the Small but Mighty Work of The MOG Project

By Eileen Coyne, Director of Public Relations, Kimball Hughes Public Relations

During this season of Thanksgiving, we want to take time to recognize a special organization for the tremendous good they are doing and for the hope they are inspiring in at least one small part of the rare disease community.

The MOG Project is a young nonprofit working to promote awareness of a rare neuroinflammatory autoimmune disease found in people of all ages and children in particular. Myelin Oligodendrocyte Glycoprotein Antibody Disease (MOG-AD) is a newer disease only recently identified via an antibody test in 2017. The disease causes dangerous inflammation in the brain, spinal cord and optic nerve. Due to its similarities with Multiple Sclerosis, it is often misdiagnosed as MS, which The MOG Project is fighting to change. Such a misdiagnosis can lead to incorrect treatments and prove harmful to the patient.

For us at Kimball Hughes Public Relations, we are passionate about donating our time to non-profit organizations, and for me, the MOG Project is personal.

In the Spring of 2020, during the height of the COVID-19 lockdowns, my elementary school-aged son was diagnosed with MOG-AD. Unfortunately, it took weeks of frightening symptoms including tear-inducing headaches, fevers, relentless vomiting, chronic fatigue, severe leg weakness, long hospital stays and the loss of nearly 20 percent of his body weight before the doctors came to a diagnosis. Lesions on his brain and spine found in an MRI led his team of physicians to ultimately test for MOG-AD. He was positive. And, as I understand it, we were lucky. My son was a patient at the Children’s Hospital of Philadelphia (CHOP), a leading pediatric institution recognized around the world for its research, treatment and care.

Again, we are fortunate to be a patient at CHOP where my son’s MOG-AD has been well managed. I am convinced that many hospitals around the country would not have known to test for this rare disease and may have even misdiagnosed him. He had two MOG-AD flares early on that manifested themselves by blurring and darkening his vision, but since receiving regular therapy, he has been healthy and well with 20/20 vision – attending school, playing sports and having fun with his friends.

A diagnosis of a rare disease, like MOG-AD, is more than just frightening. It can feel isolating at times. While I had the support of my family, friends and incredible colleagues at Kimball Hughes PR, I needed more. When I was ready to seek additional guidance and support, I came across The MOG Project. Little information was available online about MOG-AD, but The MOG Project was there to show me and my family we weren’t alone. Other patients, doctors and researchers are working diligently to encourage research, enhance treatments, and in due course, finding a cure. I immediately connected with the founder of The MOG Project Julia Lefelar and soon after Kimball Hughes PR began providing public relations services on a pro bono basis.

As public relations professionals, we inherently recognize the value in raising the public profiles of our clients. We understand the meaningful impact a smart media placement can have on an any organization – let alone an advocacy group so passionately dedicated to advancing awareness, educating the medical community, supporting patients and caregivers, and promoting research around a rare disease.

We hope to help this amazing group of remarkable individuals and industry-leading researchers bring MOG-AD to the forefront. Working with The MOG Project, the patients it supports and the influential doctors on its board, we’ve learned that in fighting for better outcomes for patients with one rare disease, we can help promote better outcomes for all. Please check out The MOG Project at https://mogproject.org/.

Empowering motorcoach companies to get social

let's work together to spread awareness, secure a better future for the motorcoach industry and get back to business.
Graphic provided in UMA’s social media toolkit

Recently, we had the pleasure of working with the United Motorcoach Association on a quick-start social media toolkit for their members. We were tasked with an interesting challenge: help the industry speak with one voice as they asked for support from the Federal governement in recovering from the COVID-19 pandemic — and help motorcoach operators new to social media adopt this tool for their future marketing efforts.

You can read more on the solution we helped UMA create in this article.

Risk brings reward as Ecopax begins construction of its second Lehigh Valley facility

Christina Wong, vice president of operations at Ecopax, understands the risk her father, Peter Wong, took when he brought his family from China to the U.S. At the groundbreaking event of Ecopax’s new Bethlehem facility, she spoke of his determination to build a successful business and the journey that has led to investing in this $20 million project. The building should be complete and ready to open its doors to the public in 2017. Discover how this family continues to grow their company and create jobs throughout the Lehigh Valley in this article from Lehigh Valley Business.

Chef Polignano of the Ryland Inn brings his own flavor to one of the state’s premier restaurants

Fulfilling one of his culinary dreams, Chef Craig Polignano of Basking Ridge, New Jersey joins the Ryland Inn as its newest executive chef. Find out how he and one of the best eats in New Jersey are making Craig a top chef and the Ryland Inn a top restaurant, in this NJBIZ feature story.

Breathtaking Addison Wolfe listing featured as WSJ House of the Day

Take a peak inside Carousel Farms, a 32-acre New Hope, Pennsylvania property featuring a beautiful farm house, restored barn and 15,000 lavender plants, with this Wall Street Journal House of the Day feature. This unique property is listed by boutique Bucks County firm Addison Wolfe Real Estate.

Landmark Hospitality describes their secret to success

NJ Biz recently sat down with co-founder and president of Landmark Hospitality, Jeanne Cretella to discuss how the company has expanded and grown in the rapidly changing hospitality industry.

Read more about the rich history of Landmark Hospitality here.

 

On A.M. BestTV, AAMGA’s Bernie Heinze discusses recent visit to Lloyd’s

BernieandJohnWeber

Earlier this month, Bernie Heinze, executive director of AAMGA, briefed A.M. BestTV’s John Weber about his recent visit to Lloyd’s to discuss the role of MGAs in transfers, audits and more. Watch the interview here.

New Hope’s Logan Inn makes history, sells for $5.6 million

Jersey City developer promises to restore, expand Bucks County landmark

Addison Wolfe Real Estate, a boutique real estate firm specializing in distinctive properties, today announces New Hope’s historic Logan Inn has sold for $5.6 million to Landmark Hospitality, headquartered in Jersey City, N.J.

According to Addison Wolfe Realtor® Caryn Black, who represented Landmark Hospitality, the Logan Inn deal represents the largest commercial real estate transaction in recent history within the borough of New Hope.

“This deal has been in the works for some time, and promises to remake the face of downtown New Hope while remaining true to the building’s historic roots and New Hope’s distinctive character,” says Black. “Landmark Hospitality has an impressive track record of restoring historic commercial properties and turning them into remarkable destinations that complement their environment. The same will be true of Logan Inn.”

Established in 1722 as a tavern, the Logan Inn at 10 West Ferry Street in New Hope is Bucks County’s oldest and only in-town, continuously operational inn on the National Register of Historic Places.

Frank Cretella, principal of Landmark Hospitality, intends to work closely with New Hope’s Historical Architectural Review Board and Doylestown Architect Ralph C. Fey, AIA, to enhance the property’s curb appeal. In its current form, Landmark’s plans call for constructing two additional permanent structures that will add 17 new guest rooms and a pebbled court yard.

“As we did with the Ryland Inn in Whitehouse Station a few years ago, our intention is to return the Logan Inn to its true landmark status,” explains Cretella. “Logan Inn has been a centerpiece for New Hope since the dawn of this town, and we intend to renew its promise, restore its history and remake it as a showplace of fine dining and lodging for the hundreds of thousands of people who visit the area annually.”

Landmark Hospitality, a leader in urban renewal and adaptive reuse practices for historic and existing commercial structures, also operates Liberty House Restaurant in Jersey City, Stone House at Sterling Ridge in Warren, N.J., and Celebrate at Snug Harbor in Staten Island, N.Y., in addition to the Ryland Inn. The company also recently unveiled its other distinctive New Hope property, the fully renovated Hotel Du Village on River Road.

Gloria Nilson & Co. opens Toms River office

Gloria Nilson & Co. Real Estate today announces it is scheduled to open its newest office in Toms River at 411 Main Street in early December 2015. This newest location brings the company’s total number of offices to 24 throughout New Jersey, with two locations in Bucks County, Pa., and more than 700 agents working throughout the region.

“Toms River is an extremely diverse and dynamic downtown environment that continues to be a destination of many throughout the state,” explained Jacqueline Paterno, the broker-associate branch manager who will lead the Toms River office. “With so many of our clients looking to Toms River and surrounding areas for homes, this was the next logical location for our business and our agents. We’re thrilled to be joining the local community.”

In addition to Paterno, 12 additional sales associates from Gloria Nilson & Co.’s Brick, N.J., office will join the Toms River office. Plans for an official grand opening celebration in the first quarter of 2016, as well as recruiting for additional experienced and well-trained local sales associates, are also underway.

Sales associates who will work from the Toms River office include: Ramona Bruno, Anna Fimagnari, James Hawkes, Michael Meehan, Sima Parisi, Loretta Parody, Peter Paterno, Tom Rafferty, Sarah Rullo, James Schneider, Roseann Smith and Donald Stout

“One of the reasons Gloria Nilson & Co. has continued to grow as a successful real estate brokerage is because our expansion is strategic and it focuses on meeting the needs of our buyers and sellers,” said company President Pat Bell. “Toms River gives us another key regional location in Ocean County as well as further reach into other desirable shore communities where buyers are most interested.”

For more information about Gloria Nilson & Co. and its new Toms River location, please visit www.glorianilson.com or call Paterno at (201) 218-6388.

Sustainable Energy Fund committed nearly $4 million to 2014-2015 energy projects in PA

At its recent annual public meeting in Lower Macungie Township, Sustainable Energy Fund (SEF), a nonprofit non-governmental organization dedicated to educating, supporting and financing energy users seeking sustainable energy options, announced it had committed nearly $4 million dollars to regional renewable and sustainable energy projects during its fiscal 2014-2015 calendar year.

Those commitments, totaling $3,952,871, represent low-cost loans to help fund a variety of energy projects across approximately 20 different organizations, including nursing homes, condominium developments, day care centers, museums, municipal governments, non-profits and various commercial enterprises.

A sampling of these projects include:

  • $1 million for Community Energy Renewables in Radnor, Pa., to allow the organization to develop future solar PV projects.
  • Nearly $45,000 for Fairmount Homes in Ephrata, Pa., for a retrofit lighting project incorporating LED lighting at the organization’s Wheat Ridge Drive location.
  • Approximately $34,000 for Youth Advocate Programs in Harrisburg to retrofit the organization’s North 3rd Street location lighting with energy-saving LED lights.

“We continue to see in both the non- and for-profit sectors a recognized need to control costs, plan for the long-term and commit to more sustainable energy alternatives,” said John Costlow, president and CEO of SEF.