Alone, we can fight 

neuromuscular diseases.

Together, we can win.

The Impact of a Diagnosis

Neuromuscular diseases, including ALS, Parkinson's Disease, Huntington's Disease, and Multiple Sclerosis, impact numerous families here in eastern North Carolina.  Often, the diagnosis is unexpected and families are not prepared to deal with the complex dilemmas they will face.  This may include adjusting their home, care giving, filing critical legal documents, and merely surviving financially.  Many of those stricken lack long term care insurance due to the unexpected onset of the illness.  If a person is unable to work, receiving social security disability benefits could take up to two years.  Parents and spouses often must take unpaid absences or leave work entire to care for their loved ones.  It quickly can become overwhelming.

Here are a few examples of expenses these families often face:

- $2000 for home wheelchair ramp construction.

- $2,500 for stairlift installation.

- $20 an hour for home healthcare. This can add up to nearly $500 a day for 24 hour care.

- $200 a day for hotel expenses, gas, and meals while traveling to visit specialists.

- $1000 for filing Estate Planning documents, Powers of Attorney, and other legal documents. -

- Various: Cost of insurance co-pays, critical home health items, in and around travel for medical appointments, etc.

Our Mission

While each experience is uniquely different, our task force partners know all about the challenges associated with a neuromuscular disease diagnosis.  Many have first-hand experience with this difficult journey.  With this knowledge, Task Force Neuro has three fundamental objectives:

1. Lead the advocacy effort in eastern North Carolina to ensure our neighbors impacted by neuromuscular diseases have adequate care capabilities and resources.  We seek to identify and mitigate care gaps through our task force partnerships and coordination efforts.

2. Assist the impacted, and their families, with the creation of an effective and compassionate team designed to assist with all aspects of care management.   Each person should be aligned with the appropriate organizations and services in a professional manner.  Just handing people brochures and referring them to a phone number is not how we do business.

3. Sustain the ability to assist with medical-related home improvements, equipment, home health care, legal guidance, respite, and financial planning through the support of donors and special events. 

Join the Task Force

We are eager to expand our network of businesses and organizations that provide, or are capable of providing, critical support to those impacted by neuromuscular diseases.  If your organization is located in eastern North Carolina or capable of providing services in eastern North Carolina, please contact us!  We would love to learn about your capabilities and incorporate your organization into Task Force Neuro. 

Request Support

We are always searching for those in eastern North Carolina who need help.  If you, or someone you know, have been impacted by a neuromuscular disease and are in need of assistance, please contact us.   We seek to hear your stories and learn what is necessary to improve the path for you and others whom may come.   

Community Outreach & Special Events

Task Force Neuro is dedicated to planning and executing routine events in partnership with other organizations.  See our Upcoming Events page for what is on the horizon. If you wish to find out more about the types of events we plan or are interested in partnering for a special event, contact us! 

The Bear Town Paddle Battles

The Bear Town Paddle Battles, hosted by Task Force Neuro, is an annual paddle sport racing event held in New Bern, NC.  Started in 2021, the Paddle Battles was a hit and we now seek to make it a staple event for kayak, surfski, and standup paddleboard enthusiasts from across the country.  Beginning in 2022, this amazing event will join the Southeast Paddle Sport Championship Race Series, a competitive race circuit stretching from North Carolina to Florida.  For more information about participating in or sponsoring the Bear Town Paddle Battles, please click below. 

Donate

Task Force Neuro greatly appreciates individuals and organizations contributing to our mission. Every donation received goes to good use and enhances our ability to support the people impacted by neuromuscular diseases in eastern North Carolina.

There are two ways to donate:

PayPal
: Click on the link below to send a one time donation or sign up for monthly contributions.

Send a Check: Checks can be mailed to Task Force Neuro, P.O. Box 1001, Havelock, NC, 28532.  

We could not be more thankful for your consideration in helping our cause.  Please subscribe to our newsletter so we can keep you informed as to how your contribution was used. 

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Address

P.O. Box 1001
Havelock, NC, 28532, US

About us

Established in 2016, the Neuromuscular Disease Support Organization or NMDSO was created to assist individuals and families affected by neuromuscular diseases. In 2021, NMDSO transformed into Task Force Neuro in order to align with a new mission to collaborate with other organizations to enhance care capabilities in eastern North Carolina. Task Force Neuro is a IRS 501 (c) (3) nonprofit organization and is made up of a volunteer staff. Funding for the organization comes from individual donations and grants.

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