N euro
M uscular
Disease
Support
Organization
EVENT POSTPONED
Due to Hurricane FLORENCE
2nd Annual Education & Outreach Summit
New Date  April 27, 2019
Coping: Day to Day Challenges

Sponsors:  The Harold H. Bate Foundation, North Carolina Community Foundation Richard Chapman Cleve Fund, Havelock Civitan, Cherry Point Bay Nursing and Rehabilitation, Dr. Joseph P. Robinson, DDS, First Citizens Bank, Arabian Court 52, TEVA Pharmaceuticals.

Call us for assistance or information
252-733-0799
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Outreach and Advocacy
Day to Day Living
When affected by a serious disease or disability 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 for those affected by neuromuscular diseases.

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

Our plans include hosting an annual education and outreach event that brings those affected and their families and caretakers togther with  those organizations that provide disease specific information and support.  We held our first event August 1, 2017  themed  "You are Not Alone".  which was so successful that we will host  "Coping: Day to Day Challenges" in April 2019.

Summits facilitate  individuals and families struggling with a neuromuscular disease and facing the same or similar challenges, an opportunity to interact with those who truly understand.



 Quite often those with a neuromuscular disease are faced with mobility challenges. Braces, walkers, wheelchairs are often required.  Regular 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 and 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   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 deductible.

In the event that  durable medical equipment is needed that your insurance will not approve, please 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 these caretaker can take a break. These services require 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. Those caring for someone with a neuromuscular disease can then run errands, visit a doctor, take in a movie or just take 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. Many of  the offerings of the facility were dictated by the majority of the population.  Let's face it,  the interests, diet, and social needs of younger people are very different than those of our geriatric populations. The medical issues surroundingyounger people with a neuromuscular disease is different than those in their 70's and 80's.  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. Our plan is to have a facility open in New Bern, NC that will serve surrounding counties in 2020.

Establishing a facility of any size is a lofty goal. Our success will depend on our ability to raise the funds necessary to make Jenn's House reality.

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 are  tax deductible. as allowed by law.