AMERICAN SIDS-AUTONOMIC DYSFUNCTION CENTER FOR CHILDREN

Rating: 5 stars   1 review

Issues: Health

Location: PO Box 2987 % Kathleen Thomas Conroe TX 77305 USA

Mission:

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Rating: 5 stars  

1 person found this review helpful

This is an all-volunteer web-based organization, with no paid employees or administrative costs. An excellent source for extensive information about sudden death at all ages and its connection with autonomic dysfunction, including research, assistive devices, and other helpful information. Gives information about subtle symptoms and how to prevent sudden death and/or disabilities. Provides resource materials for schools, to aid in preventing sudden death of athletes and others. Encourages use of inexpensive orthostatic blood pressure test to give indication of high risk for sudden death.

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

my local schools, and with families who have been able to get a successful diagnosis and treatment plan to prevent sudden death and disabilities. Sudden death can be prevented, if high risk is recognized.

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

get more volunteers, apply for grants - in-kind as well as monetary - and set up a program to educate schools, physicians, healthcare workers - especially in ERs - nationwide, quickly! I would also educate the public about smoking and sudden death.

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

helping to save lives. When I heard about the Florida case where the athlete died and the coach was sued, I recognized the possibility of autonomic dysfunction being involved. If they had only known. . .every athlete should have the orthostatic BP test.

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

of all kinds, ages, cultures, experience levels. Many were family members of victims or individuals with autonomic dysfunction, so their time is extremely limited. That's why AMSAD needs more volunteers.

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

save thousands of lives, because sudden death is sudden only because many of the early warning signs are so subtle and unknown to the public and to physicians that they go unrecognized. Just getting a regular orthostatic BP test would save many.

Ways to make it better...

I had more time to give, and the organization had more volunteers. It would also help if the public was more educated about autonomic dysfunction, and more understanding of the disabilities like those our teen representative suffers.

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

time, money, and the lack of knowledge in the healthcare industry. Although research proved the orthostatic BP test is the best indicator for high risk of sudden death, most healthcare providers don't do it, because it takes about 20 minutes.

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

people should go to the site and read the information there. You never know when you will run into somebody who is undiagnosed - but whose life can be saved just by acquiring this information.

When was your last experience with this nonprofit?

2009-10-01

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