Organization's goal is to build facility for patients

It has been six months since the Neuromuscular Disease Support Organization started, and the group has raised more than $15,000.

“We’ve come a long way since May,” said Sandi Sanderson, executive director for the group. “We have been raising money steady. We have a good two or three people that donate every single month through PayPal. Things are really starting to roll, and to us, it is an indication that we’re doing the right things.”

Donors have been contributing monthly at various levels from $25 to $100, with the goal to help serve and advocate for those with such diseases as multiple sclerosis, amyotrophic lateral sclerosis (also known as Lou Gehrig’s Disease), muscular dystrophy, Parkinson’s diseases and Huntington’s disease.

“Until we get to $25,000, anybody that donates will get their name on the plaque, and when it’s finished I will take the names over to Whiteman’s and they are going to do a nice wooden plaque for me with the names engraved,” said Sanderson.

In the first half year, the group has added Dr. John “Griff” Steel, a New Bern neurologist, to its board of directors. Other directors include Dr. Steve Fitzgerald, president, Edward Sanderson, secretary, Irene Hess, treasurer, Pete Van Vliet and Rochelle Harris.

Steele acts as the board’s medical advisor.

“Our board has become very active,” Sanderson said. “It took a while to get our rhythm going. All summer I had them every month we were meeting so we could fine-tune our vision and our mission so we could better articulate what we were doing.”

Beyond advocacy and services, the group’s goals include the construction of Jenn’s House, to be named after a Jennifer Jane Sarosiek, who died in 2015 at age 42 from multiple sclerosis. Sarosiek was the impetus for the creation of the group.

Jenn’s House would be a place where those with neuromuscular diseases can receive long-term skilled care in the event friends and relatives can’t provide that care. It would provide semi-independent rooms for those with no other place to go as well as daycare and social opportunities, respite rooms for two-to-three week stays and guest rooms for out-of-town family members to visit.

“The vision of the organization is to improve the quality of life for those with neuromuscular or neurological disease,” said Sanderson. “The mission is to provide access to services and support through advocacy and collaborative partnering, work to ensure anyone disabled with neuromuscular or neurological disease has access to day-to-day needs, and establish an age appropriate care facility that can be called home.”

Sanderson said the group is trying to identify individuals that are at or below the poverty level who are challenged with neuromuscular diseases and can’t make ends meet.

“We want to know who they are because if they can’t afford their copays or their insurance or they can’t afford their copays with their doctors or if they can’t afford their electric bill, we can probably help them in some way,” said Sanderson.

Sanderson said the organization is now starting to identify people for the project team to build Jenn’s House.

The team is going to stand up in February.

“We keep getting phone calls saying ‘you can’t build Jenn’s House fast enough,’” said Sanderson. “We have got to figure out how to crack the code to get some property in the Craven County area and get some bucks going because there is a huge demand. I say huge, but we’re only talking about 100 people, but they are lives that are being impacted.”

The project team will grapple with the size and scope of Jenn’s House. Estimates range from $25 million to $100 million to build the facility.

“That is why the project team getting together is really important,” she said. “We’ve talked to an architect out of Morehead City that is willing to work with us. We have an industrial engineer that’s willing to work with us. I have an accountant. I am looking for a project manager so I don’t have to manage it, but if I have to I will,” said Sanderson. “I would rather be chasing the money for them and let them do their thing.”

Anyone interested in the organizations or who would like to contribute can call Sanderson at 422-3163 or email her at ssandersonjjsf@gmail.com.