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  

3 people found this review helpful

Breath of Hope and Cherubs were both there for me when I was pregnant with our daughter. I tell everyone to go to them and Global CDH for support along with other groups on Facebook. The best way to get through a CDH pregnancy is support! The more the better! Breath of Hope still continues to give us support! Thank you!

When was your last experience with this nonprofit?

2013

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Rating: 1 stars  

5 people found this review helpful

I have never been more disgusted with any "not for profit" organization that that of Breath of Hope. While on the surface when you first "walk in the door" they seem to genuinely care, but you soon realize that the person who runs this is extremely opinionated and harsh when your opinions do not coincide or run parallel 100% with hers.

Her attacking banters back and forth are hard to grasp or come to terms with. We in this group are dealing with heart wrenching life and death situations and her bullish mannerism is most uncalled for. My personal opinion is that she seems to become out of control with persons (and it is not just me, I have seen it for months) who belong to other support groups instead of just "belonging" to her.

We as parents (and our families) look for resources in many different avenues as we seek answers, support and help. We should have the right to seek any and all information from as many resources as possible without feeling ostracized or being accused of not being 100% loyal to BOH. I have free will and like all American's there is no one charity that owns any one person or group of people.

I have read RobertH's post and could not agree more, his post validates the eccentric behavior witnessed and while I know I will undoubtedly feel the same wrath and backlash as RobertH and his family did - I refuse to sit back and say nothing and allow others to fall prey to quirky outlandish statements in such a vulnerable time in any one person's life.

There is no place in the world of sick or dying babies for huge EGO driven personalities. Would I ever recommend BOH to another CDH expectant mother??? No way, I have had it with the "leader" of this pack.

Fed up and disgusted in Alabama.......

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

If this is an elected board of directors, they need to find someone as a spokesperson who has even a shred of compassion and apathy then the current ego driven person currently addressing the public.

Will you volunteer or donate to this organization?

No

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

None

When was your last experience with this nonprofit?

2013

Was this review helpful? 
boh_ (Nonprofit Staff) wrote:

bizclinton, You never had an experience with our organization, nor did RobertH nor Grandpop, so how can we take your or their "reviews" seriously? We can identify all the reviews that are 4 or above stars as individuals that have used our services and programs. When we have sent private messages, we have asked them to directly contact us - and none have to partake in some sort of positive dialog to either improve services or obtain information. Breath of Hope is run by our Board of Directors and our families - all volunteers. We have no paid employees and Breath of Hope is not about one family but all our families. We also encourage families to get support from where they feel best. We also refer families to several other groups and nonprofits and promote those nonprofits causes who help.

Rating: 5 stars  

3 people found this review helpful

I found BOH a Couple months after my son was born with CDH. This was by far the scariest time in my life,just a year before my good friend gave birth to a CDH angel. I had no idea what to expectand was very worried about what the future might hold. Thanks to all the info and loving community I finally found some comfort in knowing that we weren't alone in this battle. I have never found a more helpful organization and I am so thankful to BOH for all their support.

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

Do nothing.

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?

2013

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

My son had CDH, I found this sight 2 months after his birth and it's so great to know that others go through the same things and that gives us hope.

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  

1 person found this review helpful

I found out my son was gonna be born with CDH when I was pregnant I researched it and ended up finding BOH. It was so amazing finding them. They gave me the best support through it all and they actually cared about how he was doing. I also made some great friends through this journey. I believe they are the best support group for 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?

2013

Was this review helpful? 
Rating: 5 stars  

2 people found this review helpful

My baby cousin Jackson passed with CDH this year, when i found out the founder of BOH had visited my cousin and her husband during their 4 month stay with their baby boy in UVA i was very touched. I love all of her post on the BOH page, you can tell she genuinely cares about each and every child on her page

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?

2013

Was this review helpful? 
Rating: 2 stars  

4 people found this review helpful

My grandson died of congenital diaphragmatic hernia last week and I came to here to search for a charity to donate to. I am on the board of a trust and we are researching foundations to donate to in memory of him.

I suggest to you to make your financials more transparent. It was alarming to see that your foundation does not upload any financial paperwork on Guidestar and it appears that you have never been audited. Looking at your 990 given by the IRS it was more alarming to see where money is spent and the percentage of overhead. No donor wants to see such a large amount to go to legal fees or to see that your donations are drastically declining.

In good conscience I cannot recommend your charity for a donation. As a grieving grandfather this is very upsetting to me. I hope that my pointers will help you to attain a more professional level in the future.

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

Bring on more experience professionals.

Will you volunteer or donate to this organization?

Unlikely

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

A lot

When was your last experience with this nonprofit?

2013

Was this review helpful? 
boh_ (Nonprofit Staff) wrote:

Our Board consists of individuals who have decades of experience with CDH and nonprofits. One of our board members oversees three Trust Funds which are audited annually. We do not see it is cost effective to pay for an audit of our finances when each dollar is accounted for. All of our 990s are available we submit our forms on time each year. Legal fees, $12,500.00 for 9 years - that is pretty good for a nonprofit many pay that a year or more. If we paid that for an audit, would that be acceptable? That is probably what it would cost. Perhaps you should email us at boh@breathofhopeinc.com for more information, we would be glad to give you our annual reports - we don't file them consistently on Guidestar because Guidestar is looking for it's own revenue. Guidestar is just a repository of nonprofit info. And we are a Bronze Level only because we have never had an audit. Further this, Breath of Hope is the first organization to have donated to CDH Medical Research, we have always filed a 990 Form, even when we were not required to do so. You have not contacted us directly so your review is questionable. It is quite obvious - please see the link for Grandpop's reviews one right after another: http://greatnonprofits.org/users/profile/217290

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  

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  

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?