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jean4

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1 reviews

Review for Spina Bifida Association of Greater New England, Milford, MA, USA

Rating: 5 stars  

Provides education and support services for adults & children with spina bifida. Offers annual benefit to help pay for equipment that is not covered by insurance. Great way to meet people who also have spina bifida. Contacts greatly help assist with medical & education decision making.

I've personally experienced the results of this organization in...

Being able to attend a national conference on spina bifida. Without this funding assistance, this would not be possible.

If I had to make changes to this organization, I would...

Give them more money so that they can help more people.

What I've enjoyed the most about my experience with this nonprofit is...

learning. You don't know what you don't know. The opportunity to interact with others with the same disability is invaluable.

The kinds of staff and volunteers that I met were...

Open & responsive.

If this organization had 10 million bucks, it could...

Advocate for accessibility throughout the state. Advocate for insurance reform especially in the area of durable medical equipment. Create a medical institution that helps support individuals with spina bifida throughout their entire lifespan.

Ways to make it better...

They had an "adopt a newcomer" program.

In my opinion, the biggest challenges facing this organization are...

Not enough time & volunteers.

One thing I'd also say is that...

Need more input to national organization. SBAA National seems very "top down oriented." Would like to see input from local groups/individuals seriously considered from a national perspective.

How frequently have you been involved with the organization?

About every six months

When was your last experience with this nonprofit?

2010

Role:  Client Served & Received education to make better decisions about my son's health.