CONGENITAL HEART DEFECTS FAMILIES ASSOCIATION

Rating: 4.93 stars   15 reviews

Issues:

Location: PO Box 46744 Kansas City MO 64188 USA

Mission: The Congenital Heart Defects Families Association is a Midwest not-for-profit 501(c)(3) corporation working to bring comfort and support to area families affected by congenital heart defects. Support groups, distribution of educational literature, meals cards, care packages and comfort items for children undergoing cardiac procedures are the Association’’s main focus. Additionally, the Association functions to raise money and awareness to promote congenital heart defects research through a variety of projects. One hundred percent volunteer run, the CHD Families Association strives to maximize investment in its work, not its overhead.We are the only support system in the midwest area for children with heart defects and their families. 
Geographic areas served: Kansas, Missouri and surrounding areas
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EIN 20-0391453
913-535-4970
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Community Reviews

Rating: 5 stars  

8 people found this review helpful

Finding out that your child had a heart defect can be very isolating and scary. Being able to connect with other parents who have been there as well as the care packages when your child is having surgery is such a comfort. We live in central Kansas and that type of support isn't available here, but with the KC Groups help, we now have the benefit of support in our area as well as support in the KC When we are there.

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

Helps connect with other parents who have been there.

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

More time and money to do more of the wonderful things we do for our kids, something we all need.

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

connecting with other parents.

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

All wonderful parents who really care about our families.

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

Lead the way to beating CHD's

Ways to make it better...

I had only found them sooner!!! I spent the first 8 months on my own!

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

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

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010-7-01

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Rating: 4 stars  

12 people found this review helpful

My son was diagnosed in-utero with Tetralogy of Fallot. I found CHD Families through Children's Mercy and attended support group meetings before he was born as well as during his first year. I really enjoyed getting to know other CHD families and I learned a lot about surviving hospital stays, advocating for my child, and generally what to expect with a CHD child. CHDFA sent us a care package during our hospital stay including a handmade blanket which made us feel very welcome.

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

helping to raise money for CHD research through the KC Heart Walk.

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

VERY friendly and helpful

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

reach every family with a CHD kid

How frequently have you been involved with the organization?

About once a year

When was your last experience with this nonprofit?

2008-6-01

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Rating: 5 stars  

11 people found this review helpful

CHD Families has provided support to my family before, during and after our daughter's 3 heart surgeries. They provided care packages to us after the surgery which included a hand-made blanket for our daughter and meal tickets so we did not have to worry about paying for all of our meals while in the hospital. CHD Families also provides a face-to-face support group which helps us connect with other families that are going through some of the same issues. This helps us realize that we are not alone. This organization has been amazing for our family to be a part of and we are grateful for all they do!

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

I have seen this organization grow throughout the years in the number of families it supports and in the amount of activities it is able to offer.

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010-6-01

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Rating: 5 stars  

13 people found this review helpful

In a scary situation watching my child go through heart surgery and there were people there who had been through the same things that helped me to cope with it all. They have a great support system of families and the people in charge are just exceptional. They really made a difference in my life and I am forever greatful for this non-profit.

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

helping other parents who are in the same situations. Helping with fundraisers and care packages. Just getting the word out.

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

being given hope.

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

exceptional families.

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

reach even more families and help them to understand that they are not alone.

How frequently have you been involved with the organization?

About every six months

When was your last experience with this nonprofit?

2010-5-01

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Rating: 5 stars  

12 people found this review helpful

CHD Families has been a great group to be connected with! They do wonderful things for people who need assistance and support at challenging times. The networking with other families dealing with CHD is fantastic and has helped us a great deal!

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

benefitting from the networking with other families and connections with other CHD kids with my son

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010-3-01

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