ALS & NGO’s

NGO’s
(I’m only familiar with US NGO’s)

Today I would like to focus on the importance and effectiveness of NGO’s, which stands for nongovernmental organizations. Just another fancy word for nonprofits. A and prominent one is the Gleason Foundation established by Steve Gleason and his family. However there are others such as Augie’s Quest, every 90 minutes, ALS worldwide and many more. ALS TDI to my knowledge is the largest research organization focused solely on muscular neurodegenerative conditions, primarily ALS. Then there is I Am ALS, iamals.org , a fledgling yet impactful organization.

This is only a short list there are many more and there are some that are just Grassroots organizations in the community. Of course there are countless individual local fundraisers taking place all the time in order to raise much-needed funds to purchase an individual wheelchair , wheelchair accessible van and perhaps many other needed medical devices.

With the current Healthcare environment as it is it is very uncertain weather any strides that have been made in recent years, in support of terminally ill patients will remain in place. It’s already extremely difficult to navigate through Healthcare policy and receive the necessary benefits. It’s even more difficult to acquire access to assistive devices and/or funds to purchase those devices. Eventually an ALS patient will need a lot of support and many medical and communication devices in order to remain a viable member of the family and feel connected to the world around them.

I’ve mentioned it before but did you know that most patients refuse to get a tracheotomy primarily due to the cost of maintaining a patient on a ventilator. In past years being on the ventilator was one of the last stages of ALS. Nowadays technology has become so Advanced that it has become not necessarily simpler but more effective to remain on a ventilator. New devices and attachments make it more manageable to safely maintain the tracheotomy and keeping a loved one around longer.

However the second aspect of this decision has to do with the burden on the family and caregivers due to the patient needing 24-hour support. Many patients don’t want to burden their families both emotionally, physically and financially. This speaks volumes as to the resilience and strength of the individuals on both sides of the spectrum. But it also speaks volumes about our great nation, one of the wealthiest in the world and how it can’t get its head out of its ass with respect to Health Care. This is why every year we have to roll on Capitol Hill and show our elected officials the face of ALS and it’s impact. Unfortunately the majority of the elected officials don’t in fact meet with The Advocates, it is their staff that engage.

So as you can see NGO’s are essential to fill the gap that hour convoluted often impossible to navigate Healthcare System creates. So when the time comes to put your money where your mouth is please consider donating to local fundraisers, nonprofits that help patients and Families and ultimately organizations that are conducting research in the hopes of finding the Cure. Get out there and be active if not for ALS to whatever cause is near and dear to your heart. I know ALS isn’t the only condition out there, there are so many.

However ALS continues to have a small footprint but this is a big BUT! Did you did you know that statistically ALS and other MND conditions are projected to grow exponentially in the future. So consider this thought, support those in need and those conducting research now so that one of your future family members or a current love one can have hope in being treated or cured in the future. It may not be a National concern at this moment but if left unchecked and underfunded it can become one

Show a non-profit some love…

The Juan and Only

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