N euro
M uscular
Disease
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Organization
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252-733-0799
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Outreach and Advocacy
Day to Day Living
When affected by a serious disease or disability our normal reaction is that we become so overwhelmed we may not think clearly and often  don't know where to go for help. Our mission is to promote advocacy and awareness.

NMDSO is working with various organizations to ensure the lines of communications are open and strong. Even though we cannot not give medical advice, as a result of working with our community  we can help by identifying agencies and organizations that can provide various types of assistance.

Our plans include hosting an annual outreach and education event that brings those affected and their families and caretakers togther with  those organizations that provide disease specific information and support.  Our first event is being planned for August 1, 2017 and is themed  "You are Not Alone".

This event will also enable Individuals and families struggling with a neuromuscular disease and facing the same or similar challenges an opportunity to interact with those who truly understand.

We believe there is much to be shared.

 Quite often those with a neuromuscular disease are faced with mobility challenges. Braces, walkers, wheelchairs are often required.   Our homes are not normally built with doorways wide enough to easily accommodate adaptive equipment. Ramps are often required to enter and exit homes. Doorways are too narrow, commodes too low. This is where we can help.....We can make arrangements to have  skilled services  come to your home and make the necessary minor modifications.  The cost will be based on your ability to pay.

If a family affected is facing financial challenges, such as prescription and doctor visit deductables we assist by working with organizations that can vet the needs and match them with our assistance. No one should avoid medical treatment because they cannot afford to pay  a deductable.

In the event that  durable medical equipment is needed that your insurance will not approve, give us the opportunity to assist.

Caretakers also need a break from time to time. We have volunteer Registered Nurses, Licensed Practical Nurses and Licensed Nursing Assistants who will provide respite support so that the caretaker can get a break for a few hours. These services requires advanced planning so call us and let us work with you.




 
Jenn's House
This is our BIGGEST goal and project.  Our ultimate goal is to build a full care facility but we have quickly learned we must walk before we run and running is very expensive. Our plan is to initially estalish a group respite care facility to provide day care services so that those caring for someone with a neuromuscular disease can run errands, visit a doctor, take in a movie or just get a well deserved break .
 
Our Jenn's House concept is being named after a young vibrant woman who at 42 years old lost her battle with MS. She spent from age 35 to her passing in a rehabilitation and nursing facility where she received excellent care but she was surrounded by people much much older, where the offerings of the facility were dictated by the majority of the population.  Let's face it the interests, diet, and social needs of young people are very different that those of our geriatric populations. The medical issues surrounding people with a neuromuscular disease is different than those in their 70's and 80's.  Maybe, just maybe,  if there were options for Jenn's care and help for her family, she might still be with us.
 
Jenn's House will offer those with a neuromuscular disease with the feeling of belonging and the confidence that they are getting the best care available and peace of mind for families. 

Because this is such lofty goal our success will depend on our ability to raise the funds necessary to make Jenn's House reality. Our goal is to have a facility up and running in late 2019.

If you want more information about this project please call us at 252-733-0799.
 
You can make a  donation by clicking on the donate button above or by mailing a check to NMDSO P.O. Box 1001 Havelock, NC 28532.

All donations a  tax deductable.