Breath of Hope Inc.
July 7, 2011
Breath of Hope has continued to support CDH awareness even into my son's 2nd year of life. My son Carter was diagnosed at 23 weeks gestation, we spent 7 months in the NICU at Cincinnati Children's Hospital. To celebrate Carter's second birthday and the miracle of his life, we did a small fundraiser during CDH Awareness Month - March 2011. Elizabeth sent (without being asked to do so) almost 50 different items for me to give to people who participated in the fundraiser. She offered pins and wrist bands free of charge and no postage cost to us. This was a huge help for our event and enabled us to further spread the word about this awful congenital defect.
We are greatful for organizations like Breath of Hope. This organization also has allowed us to connect with many other CDH families that we keep contact with today.
We cannot thank you all enough.
The Great!
I've personally experienced the results of this organization in...
I've personally experienced the results of this organization in seeing the sincere care that is placed on events and fundraisers that are intended to bring awareness to this birth defect.
Ways to make it better...
If I had to make changes to this organization, I would...
eliminate the need for competition between groups who support the same cause.
July 6, 2011
I have been a member of B.O.H .for 2 years now and I have contributed to this organization. While they did not help me personally in any form except a list serve, I nevertheless thought this a good charity and I trusted that Elizabeth Doyle Propst was a good leader.
Last week a law journal article about trademarks on CDH Awareness was bought to my attention and I felt compelled to read it. I was aware of the trademarks that Elizabeth filed and believed she was doing so to protect the intellectual property of the charity. I had more than one conversation with the staff at B.O.H. about this and was told that B.O.H. was being sued by C.H.E.R.U.B.S. and that members should not concern ourselves with such pettiness. I believed every word as truth and continued to support B.O.H. through contributions and social media.
After reading this article however, I am flabbergasted. I researched the related trademark papers on the government site and found that the journal article is not only true, but that I was blatantly lied to by Elizabeth and others at B.O.H. about the trademarks. I did more research and looked at both trademarks and what C.H.E.R.U.B.S. said about the situation. I found C.H.E.R.U.B.S. to be honest and forthright enough to provide families URLs to support the facts. In the past 2 years I have watched B.O.H. shushing any attempts by it's members to seek out facts or legal paperwork while condemning another CDH charity. The final straw was seeing a video on Facebook of a court case in which the president of C.H.E.R.U.B.S. had to get a restraining order against Elizabeth. After hearing Elizabeth's own voice lie under oath about harassing her I felt physically ill. I had heard rumors but Elizabeth has always been nice to me so I ignored them. I try hard to believe the good in people but often that makes me a fool, as in this situation.
Angered, I came here to search more information about both charities and found that B.O.H. spent $12,000 in 2009 in legal fees to keep the trademark while C.H.E.R.U.B.S. did not spend any funds. Were my donations used to pay this? What was spent in legal fees for 2010 and 2011?
I believed that B.O.H. was created to help CDH families and I wanted to be a part of that. Now I feel that it was just a tool for a vengeful woman to attack others. I cannot fathom the dishonesty and hatred I am witnessing in these papers and videos and it disgusts me. I am very angered and disappointed by this. It is reprehensible that a charity should hold trademarks over another charity this way and then lie to it's members and the public. I will not donate to nor support B.O.H. in the future. I will be filing complaints against B.O.H. and I should hope that the IRS does something to correct this behavior.
The Great!
I've personally experienced the results of this organization in...
I was a member for 2 years. I have a child born with Congenital Diaphragmatic Hernia. I hold honesty and integrity in very high regard and found that it to be severely lacking at B.O.H..
Ways to make it better...
If I had to make changes to this organization, I would...
A complete review of all finances and behaviors of this organization and it's leader. Refund all money to donors. A public apology to members, C.H.E.R.U.B.S. and the public. Complete disclosure of all legal paperwork of all cases.
More feedback...
How would you describe the help you got from this organization?
A little
How likely are you to recommend this organization to a friend?
No
How do you feel you were treated by this organization?
Badly
How did you find this group?
Doctor referral.
What, if any, change in your life has this group encouraged?
I will not support another charity without researching first.
March 31, 2011
Awesome group of people who offer support, advice and prayers. A group that you can share your child's story and experiences or updates of your child because they have experienced it or they have a family member who is a CDH hero.
The Great!
I've personally experienced the results of this organization in...
dealing with CDH
Ways to make it better...
If I had to make changes to this organization, I would...
no changes need to be made
March 27, 2011
My son was born with CDH in May of 2009. Before he was diagnosed in the womb, we had never heard of CDH. The internet is full of very negative and heartbreaking information that did not allow us much hope while preparing for our sons arrival and the journey through a very scary time in our lives. The NICU nurses at the hospital pointed us in the direction of Breath of Hope and I have been following and looking to them for guidance ever since. Not only has BoH serves as a great source of information about Cash's early battle with CDH, but also continues to help me feel comfortable and make decisions about things such as shots, doctors appointments and just general support of other parents who have gone through similar circumstances. I will always be grateful to them for being our Breath of Hope!
The Great!
I've personally experienced the results of this organization in...
making decisions for my sons care.
Ways to make it better...
If I had to make changes to this organization, I would...
strive for more advertisment. This nonprof group could help so many more people out there who have no idea BoH exists.
March 22, 2011
This organization helps families that have been touched in some way by the birth defect Congenital Diaphragmatic Hernia through support, awareness and ideals. They are like family but never pushy or unattainable. Their website, facebook page and Yahoo.group page are sources of continued support where someone will be there for you, a lot of the times it doesn't matter the time of day, a member is there to listen. They have a huge list of helpful material they give away and are a haven in a storm of confusion and fear just when you need them.
The Great!
I've personally experienced the results of this organization in...
In January 2007, during a routine 20 week ultrasound, it was discovered that my ninth child had CDH(Congenital Diaphragmatic Hernia) when I got home after the appointment and started research on this defect, the majority of what I found was a: out of date and b: depressing and felt unwelcoming until I found a lady facing a similar situation as me and mention she found this website called Breath of Hope. I checked them out and felt an instant attraction. And since then I have been a member
Ways to make it better...
If I had to make changes to this organization, I would...
As far as changes, the only real change would be not to have a need for an organization as this but there is a need so I would say then more personal face-to-face meetings with others facing the same challenges would be nice.
March 21, 2011
I only wish that I have found this wonderful group before my son was born. He was diagnosed on July 16, 2010 at 25 weeks gestation. My husband and I were devastated, and had no idea what the future held for us, our 2 girls, or our unborn son. It would have been amazing to have someone to talk to during those hard, dark days. Breath of Hope is absolutely amazing!! Now that my son is home, nearly 6 months old, and doing well, I hope that through Breath of Hope, I can help another family going though this very difficult diagnosis! Thank you for everything that you do!!
The Great!
I've personally experienced the results of this organization in...
This organization has given me inspiration on my hard days, and motivation on my good!
Ways to make it better...
If I had to make changes to this organization, I would...
If I could make one change to this organization it would be to give it a louder voice that could be heard the world around!!
March 9, 2011
I found this group when we discovered at our 20 week ultrasound that my son had CDH. If it weren't for this group my son would not be alive today. It was with their help that I pushed my doctors when he reherniated. It is the knowledge, support, and expertise that I could not have done or do without. I recommend this group for all CDH parents that are searching for answers and want to continue to be educated.
The Great!
I've personally experienced the results of this organization in...
Thanks to their advice and knowledge I was able to push my doctors for more tests when he reherniated.
Ways to make it better...
If I had to make changes to this organization, I would...
Like to give it millions so it could reach everyone out there and educate them on CDH.
March 1, 2011
On April 29th, 2010 my husband and I found out that we were expecting our 4th baby boy. We recieved a diagnosis of a Congenital Diaphragmatic Hernia on May 21, 2010. After searching the internet and signing up for all the information, blogs and groups that I could find, I received an email for Elizabeth. I remember her email bringing me to tears because she asked me if I was sleeping at night. I was brought to tears because I was not sleeping and she already knew this. She knew from personal experience. Her words so tender and gentle yet encouraging and bright, kept me afloat at the most difficult times throughout my pregnancy. We continued to build a friendship and although states away, she is one of the most amazing friends I have and I am honored to call her a friend. She was more than happy to send out an "Expectant parent package" along with lots of other CDH things. She sent Abel a name tag that she hand made and was the first thing that hung at his bedside when he was born and transported to the NICU. After Abel Kane was born, she was still by my side, although states away, she never missed a beat and always held me in thoughts, prayers and chants. She always knew what to say and the appropriate time to say it. Breath of Hope has helped our family in so many ways. BoH is personal, not just a website or a non profit. Elizabeth reaches out individually to each family. Boh provides lots of different resources to help families through their diagnosis, pregnancy, birth and journey of CDH babies.
There is no way that I would have come to understand CDH without Boh. There is no way that I wold have been able to survive the ups and downs of CDH without Boh. There is no way that I would be able to pass on the help and assistance without Boh.
The Great!
I've personally experienced the results of this organization in...
Boh helped our family throughout our CDH journey-diagnosis, pregnancy, delivery and NICU stay.
Ways to make it better...
If I had to make changes to this organization, I would...
Love it if Elizabeth could live closer to us:-)
March 1, 2011
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.
The Great!
I've personally experienced the results of this organization in...
The caring that was offered to our family
Ways to make it better...
If I had to make changes to this organization, I would...
None
May 30, 2010
My son Leo was diagnosed with CDH at my 20 week ultrasound in October of 2007, the first thing I did was search the internet for information. What I found scared me to death, but I resolved to believe my baby would live. I heard about Breath of Hope through a co-worker of my mother who had a daughter with CDH. But it wasn't until about three months after my son was born and we were finally able to come home that I really got involved. It's very informative to read about other people's children and the problems they face. Most doctors have little or no information about CDH or any of the lasting issues that can be caused by it. Reading stories from other parents helped to prepare me for what I might face, and what the long term affects for my son might be. It's also very humbling to read about the babies that don't make it. It makes me more greatful for my son, even when he's driving me crazy with his toddler ways. One of the only bad things is a rivalry between Cherubs and Breath of Hope. To be honest I don't get the negativity, but have never experienced anything but positivity from Breath of Hope, and read many negative things from Cherubs on social networking sites. I think that speaks for itself. It is really too bad these two great organizations can't work together to help promote awareness and raise money for research for CDH.
The Great!
I've personally experienced the results of this organization in...
I took on the responsibility this year of sending out a proclimation request to the govenor of Minnesota, to proclaim March 31st, 2010 CDH Awareness day. It means a lot to me that he signed it, and that I was able to help promote awareness.
More feedback...
What I've enjoyed the most about my experience with this nonprofit is...
being able to read about other parents experiences, having that open and supportive formum, for whatever I may need to talk about.
The kinds of staff and volunteers that I met were...
great, I've been amazed at the level of dedication that they have.
If this organization had 10 million bucks, it could...
raise awareness to a whole new level.
How frequently have you been involved with the organization?
About every week
When was your last experience with this nonprofit?
2010
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