Breath of Hope Inc.

Rating: 4.35 stars   62 reviews

Issues: Health, Philanthropy, Cancer

Location: PO Box 6627 Charlottesville VA 22906 USA

Mission: Breath of Hope exists to combat the congenital diaphragmatic hernia birth defect. We are committed to supporting parents, children, family members and friends facing the diagnosis of a congenital diaphragmatic hernia birth defect. We carry out this mission through promoting public awareness, supporting the medical community and encouraging research efforts to one day successfully treat all those diagnosed with a congenital diaphragmatic hernia.
Results: Since 2008, we have either directly donated, help direct or encouraged, supported or assisted others to donate over $150,000 to Medical Research to benefit congenital diaphragmatic hernia research. Since 2008, we have had 34 States issue Proclamations or Resolutions and the US Senate to issue a Resolution for March 31st to be Congenital Diaphragmatic Hernia Awareness Day. We have distributed our medically reviewed materials, our expectant parent packages to hundreds of families and hospitals throughout the US and outside the US.
Target demographics: Families, anyone who may have a family in the future, grandparents, aunts, uncles - anyone who could have a relative with CDH.
Direct beneficiaries per year: Thousands have benefited from the programs and initiatives of Breath of Hope.
Geographic areas served: United States
Programs: Congenital Diaphragmatic Hernia Awareness Day Program Scholarship Program Expectant/New Parent Packages Program New Parent Program Parents of Angels Program Newsletter Program CDH Summit Program Fund Raising Program CDH Awareness Day Program
2013 Top-Rated Nonprofit
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EIN 20-8320645
888-264-2340
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Community Reviews

Rating: 5 stars  

My baby girl was diagnosed with CDH Dec 2012, I was doing some research about CDH and came across with Breath Of Hope. Elizabeth was deffenitive very helpful, she took the time to talk to me and make me feel that there is hope. Thank you Elizabeth for your hard work. God bless you

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

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Rating: 5 stars  

1 person found this review helpful

When our granddaughter was diagnosed with Congenital Diaphragmatic Hernia, or CDH, we struggled to find current information until we found Breath of Hope. They not only provided us with information but also support, encouragement, and contact with others facing the same challenge. Our granddaughter is now in Kindergarten and has continued to thrive, and we owe a great debt to the kindness of Breath of Hope.

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

Was this review helpful? 
1 previous review
Rating: 5 stars  

When we found out my granddaughter was going to be born with this birth defect called Congenital Diaphragmatic Hernia, which we had never heard of, Breath of Hope was there to offer information, encouragement and support. We will forever be grateful to them.

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

The caring that was offered to our family

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

None

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Rating: 5 stars  

My son died from CDH. I didn't know what it was or anything about it. After he passed I began looking online for information about this defect. I came across Breath of Hope and I couldn't have been happier. Elizabeth was very comforting and welcoming. I didn't feel awkward putting my story or my feelings out there because I knew all the people on there have lost children or have children with this defect that stole my son from me. I can vent any day of the week, any hour and I will always get a caring response. BOH has definitely changed my life and has helped me get through the grieving process. They are very informative. I wish I had them from the first day I was told my son had CDH.

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2012

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Role: General Member of the Public
Rating: 4 stars  

My son was born with CDH he has overcome many obstacles. And he is age 9 !!!!! This group is nothing less than amazing and super supportive

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2012

Was this review helpful? 
Rating: 5 stars  

When the baby I was carrying was diagnosed with CDH, I found Breath of Hope. They provide information and support for parents & families. They've been an invaluable resource for me and my family.

How would you describe the help you got from this organization?

A lot

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

Was this review helpful? 
Rating: 3 stars  

1 person found this review helpful


I have been a member for about a year and I find the information about CDH Awareness Day very conflicting and a bit dishonest. Elizabeth says that BOH has March 31st and it is not because of any reason and not a charity day. But in the records she clearly states that it is. I searched and found this. There are several posts on the internet about why she chose March 31st. It is petty and I think the rewrite of the charity history to benefit her stance in a current argument against another charity is very unprofessional.

Hi all,

First what BOH was - what it was formed to be and why it was formed.

Through the push of others I started the listserv with under 20 members - friends I had found through my own CDH and Grief Journey. In fact, without the push of several of them to start it - I probably would have never started the Yahoo Group and thought about using my experience with non-profits to work. You see - there was nothing out there that was for all - that encompassed all and was working actively to bring awareness of CDH to the general public we must all still explain the defect to!

I was part of an organization and left because I was advised to based upon my career in non-profit at the time and also because it was going no where and doing nothing. I have high ethics and standards, some in this world do not.

BoH was known to others as a small group of grieving Moms. And most of us were. I was researching and my job made it virtually impossible to start BoH on the way to NPO status. We had squabbles then. There is not a LISTSERV out there that does not. The written word sometimes offends. We can not be face to face to view the actual meaning behind the words that we might interpret as hurtful - when they are not.

Suddenly BoH went through this huge growth spurt. We had over 140 members join within a year. I had a handful of Grieving Moms who were with the Listerv from the beginning email me on almost a weekly basis - we need another listerv because I can't read about survivors. I set up a poll. Poll said keep just one listserv. I let it be. And for about 6 months so did those Moms. Later poll said to add the listservs - I did and I got backlash for that. I am damned if I do and damned if I don't!

Last fall, I finally had the time and energy and had researched enough to organize BoH into a NPO. I went to folks that had been with BoH for quite a while and chose those to be on our Board of Directors. These were also those that were on the Board when we Incorporated in 2004 but we added a few more. I wanted a balance of both parents of HAs and EAs to be on the Board.
Members on the Board were told - since I had to take this "Leadership Roll"
there might be some decisions I make that they wouldn't like, that they might hate me at times for the decisions that have to be made to push forward. They did. Our Mission Statement was the start of it.

Breath of Hope
Congenital Diaphragmatic Hernia
Supporting all
Searching for a cure

MISSION STATEMENT
Breath of Hope exists to combat the congenital diaphragmatic hernia birth defect. We are committed to supporting parents, children, family members and friends facing the diagnosis of a congenital diaphragmatic hernia birth defect. We carry out this mission through promoting public awareness, supporting the medical community and encouraging research efforts to one day prevent or successfully treat those diagnosed with a congenital diaphragmatic hernia.

This group is for those who had a child with Congenital Diaphragmatic Hernia - CDH. This listserv as of 2/2004 is for both survivors families and those who have had non survivors - but then we are all survivors.

This is to establish an organization that will be active and productive for families, doctors and research. As of 5/17/2004 Breath of Hope is now incorporated through the Commonwealth of Virginia's State Corporation Commission. We have sent in our application to the IRS to establish a 501 c 3 as of March 31, 2007!


Above is also the history. We had one Board Member who wanted us to include the phrase "grieving parents" in the mission statement. Majority - says it does - it includes ALL in this. This Board Member wanted as she put it, "my group" represented. I am a Grieving Parent too (and I wasn't part of her group?) - and Mission statements are very broad. She later came to me saying that a HR Rep told her this too! When she left she said I never listened to her (she was the one that pushed the added listerves?) and I was going to drive BoH into the ground.

We had a member who was doling out medical advise, and there were others claiming that she had contacted them after their child had died saying that they had or their doctors had or their decisions for medical care had killed their child. I had warned this member several times regarding her medical advising. She was then removed. I don't like doing this.

Others on the Board felt this was harsh. In society we all need rules - I don't like them either but they are guidelines for conduct. There are a whole lot of people out there that are less than balanced - not here but elsewhere and sometimes they join Listservs (you don't need a license - just a computer). Board members left because I made the hard decision of removing this person. Some of those board members were friends for years and made their issues with me - and their other issues - every ones issues here. They "Grandstanded" when they left several months ago and put what was on the Board Listserv out here for everyone.

That was not necessary, professional or in my personal opinion ethical for a Board Member to do. (Nor was it caring or compassionate to those expecting or those that had just lost their angel.) I was also very hurt by some things that these people were accusing me of - saying I sent them crazy emails - when all I did was thank them and tell them I understood that there was a whole lot of work to forming a NPO. (How was that crazy?) I am just the punching bag and continue to be that for many out there.

Many of you understand and have emailed me off the listerve and I pushed on. Think I wasn't hurt? Think I wasn't mad? Think I didn't want to fold up shop - I did!

Growing pains. Many of those that left want a Grief Support Group - well - this is a CDH Group and that includes those expecting, those who have survivors and those that have angels. If we offer grief support - that is bordering on medical advise. There are many out there that are grief support and we have the Angels Listerv and we also have this one - and I truly and honestly believe it is a help. I also believe that if you need more help with grief or even your family if you have a EA in the household - there is support out there - you go to them. I admit - I needed to see a councilor after Cecilia. All the hurt you have from your past - somehow comes out when something truly devastating as the loss of a child hits you. I worked through myself for over a year. We are working on something that would help everyone recognize signs of needed help and resources out there. I have also been accused of telling people the "right way to grieve". There is no right way but one can not be in a rut for 3 or more years and think that is the way your life should be for the rest of it! There is a point you must pull yourself out and try to see the beauty and joy of your child and put a positive spin on it - make lemon aid out of the lemons you received.

Where Breath of Hope is....

We are a new NPO - awaiting the IRS Determination Letter, organizing folks together to volunteer and help. We have several members already helping and who have stepped forward to help. We still have members that might need a break from BoH - that is fine - sometimes we all need to take a week, a month or more to just focus differently! That is okay. This will still be a struggle. There are a whole lot of things on the back-end that will need to be done to get BoH where it is. Our website - there is progress but when we ask for pictures and ask for Testimonials and ask for anything and get no response - how are we to do anything?

BoH is not supposed to be about one child, or one person who formed it/founded it - I never post that I am the Founder - anyone ever notice that? It isn't solely about Cecilia - it is about all of you and all of your children. Always has been!

I can not stop what I have started. I will not stop it either. It hurts me that I have given folks chances and they have betrayed me, now say that I did this or that - when I did not. Accuse me of being this or that - and I am not. These were my "friends"? Well guess what, there are people who have been here since the beginning who have not said that about me, who are still here and still support the vision of Breath of Hope and what it is about.

The future - well that is up to you all here. We can - as I have - ignore the critics and move forward or listen to the critics and wallow in hurt and pity.

I choose to push on - just as I did after Cecilia decided wings would be more amusing than feet. I had no choice but to push on - and I don't have any choice now. In 2007 - there will be approximately 1800 CDH babies born - it hasn't stopped. Nor should we.

With warm regards,
Elizabeth
CEO
Breath of Hope Inc.

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

Distrust. The CEO seems to have her own motives.

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

I think it needs more transparency.

How would you describe the help you got from this organization?

Some

How likely are you to recommend this organization to a friend?

Unlikely

How do you feel you were treated by this organization?

Somewhat badly

When was your last experience with this nonprofit?

2012

Was this review helpful? 

It isn't a charity day. It is the date we mailed in our paperwork to the IRS but the IRS ruled May 17, 2004 as our determination date. So, by fate it is a day that wasn't about one organization and it shouldn't be. I think it is dishonest to take a private post from forums and post it out on a review without reading fully into the responses and information behind it.

Review from Guidestar
Rating: 5 stars  

My son was born with CDH in December of 2011. Thankfully he was a fighter and pulled through and is now a healthy 6 month old! Many other babies are not as lucky though and this charity is a wonderful way to bring awareness.

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2012

Was this review helpful? 
Rating: 5 stars  

Through the work of Team Abel we provide support to families who have or are going to have Babies diagnosed with CDH. We have a lemonaide stand at local Farmer's Markets, and around the globe to raise money so we can help with research and needs of families. Amber is the hardest working mother of 4 with a baby who has CDH, and it is becasue of her that I wanted to be on our board, it is inspiring!

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

How much of an impact do you think this organization has?

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2011

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Rating: 5 stars  

I came to learn about Breathe of Hope after my daughter was diagnosed and died from a congenital diaphragmatic hernia. I met Elizabeth who took me under her wing and helped me through my first year of grief. It has been long and hard road, but breathe of hope helped me see the light, especially Elizabeth!! They are awesome and have something helpful for all kinds of families that are dealing with CDH. Mine however happened to be that I am a Mom of an Angel and they were able to be there for me when I needed them most!!

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2012

Was this review helpful? 
Rating: 1 stars  

1 person found this review helpful

I am a CDH parent who dared to question Elizabeth years ago and was kicked out of Breath of Hope. She is the most dishonest, immature, unprofessional narcissist I have ever had the misfortune to encounter. She was fired from the Red Cross for mismanagement of funds and now she is doing the same with Breath of Hope. She was kicked out of CHERUBS and Compassionate Friends. She was fired from a cemetery job because she couldn't even get along with dead people. She has bounced from one non-profit to another until she had to start her own because no one else wanted to deal with her bipolar psychosis. She offers nothing and rides on others coattails to build her own self-esteem while leaving a wake of destruction in her path. She should never be allowed to work in the non-profit sector.

How would you describe the help you got from this organization?

None

How likely are you to recommend this organization to a friend?

No

How do you feel you were treated by this organization?

Badly

When was your last experience with this nonprofit?

2006

Was this review helpful? 

Six years later it appears you do not know me, nor do you report the facts correctly. I have never been fired from any position I have held. I have been downsized/laid-off, not fired. You are welcome to email me and I will give you all my former employer's contact information to verify that information. No one has been "kicked out" of Breath of Hope, there have been suspensions from our forums for behavior issues.